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Aguas Peris M, Del Hoyo Francisco J, Nos Mateu P, Echarri Piudo A, Calvo Moya M, Gros B, Martín-Arranz MD, Monte Boquet E, Inglán Agustín S, Valdivia Martínez A, Correcher M, Barreiro-de Acosta M, Mañosa Ciria M, Rodriguez-Moranta F, Zabana Y, Gutiérrez Casbas A. Position statement of the Spanish Working Group on Crohn's Disease and Ulcerative Colitis on the use of Telemedicine in Inflammatory Bowel Disease. GASTROENTEROLOGIA Y HEPATOLOGIA 2025; 48:502320. [PMID: 39672505 DOI: 10.1016/j.gastrohep.2024.502320] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 12/07/2024] [Accepted: 12/08/2024] [Indexed: 12/15/2024]
Abstract
Inflammatory Bowel Disease (IBD) is a chronic digestive condition that requires continuous monitoring by healthcare professionals to determine appropriate therapy and manage short- and long-term complications. Telemedicine has become an essential approach for managing chronic conditions such as IBD, improving care accessibility and continuity, decreasing hospitalization rates, and optimizing patient follow-up. It enables rapid treatment adjustments and encourages patient self-management. Additionally, it reduces the burden on the healthcare system by decreasing unnecessary in-person visits and provides real-time support, thereby improving quality of life and clinical outcomes. The objective of this position statement by the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU) is to establish recommendations for the use of telemedicine in its different modalities (teleconsulting, telemonitoring, mobile applications and telepharmacy) for patients with IBD and address the legal, ethical, and technical aspects necessary for its proper implementation.
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Affiliation(s)
- Mariam Aguas Peris
- Servicio Aparato Digestivo, Hospital Universitario y Politécnico La Fe, Instituto de Investigación Sanitaria La Fe (IISLaFe), Valencia, España.
| | - Javier Del Hoyo Francisco
- Servicio Aparato Digestivo, Hospital Universitario y Politécnico La Fe, Instituto de Investigación Sanitaria La Fe (IISLaFe), Valencia, España
| | - Pilar Nos Mateu
- Servicio Aparato Digestivo, Hospital Universitario y Politécnico La Fe, Instituto de Investigación Sanitaria La Fe (IISLaFe), Valencia, España
| | - Ana Echarri Piudo
- Servicio Aparato Digestivo, Complejo Hospitalario Universitario Ferrol, A Coruña, España
| | - Marta Calvo Moya
- Servicio Aparato Digestivo, Hospital Universitario Puerta de Hierro Majadahonda, Madrid, España
| | - Beatriz Gros
- Servicio Aparato Digestivo, Hospital Universitario Reina Sofía, Córdoba, España; Instituto Maimónides de Investigación Biomédica (IMIBIC), Universidad de Córdoba, Córdoba, España; Centro de Investigación Biomédica en Enfermedades Hepáticas y Digestivas, CIBERehd, Madrid, España
| | - María Dolores Martín-Arranz
- Servicio Aparato Digestivo, Hospital Universitario La Paz, Facultad de Medicina, Universidad Autónoma de Madrid, Instituto de Investigación Sanitaria del Hospital Universitario La Paz (IdiPAZ), Madrid, España
| | - Emilio Monte Boquet
- Servicio de Farmacia, Hospital Universitario y Politécnico La Fe, Valencia, España
| | | | | | - Marisa Correcher
- Departamento Sistemas de Información, Hospital Universitario y Politécnico La Fe, Valencia, España
| | | | - Miriam Mañosa Ciria
- Centro de Investigación Biomédica en Enfermedades Hepáticas y Digestivas, CIBERehd, Madrid, España; Servicio Aparato Digestivo, Hospital Universitario Germans Trias i Pujol de Badalona, Barcelona, España
| | | | - Yamile Zabana
- Centro de Investigación Biomédica en Enfermedades Hepáticas y Digestivas, CIBERehd, Madrid, España; Servicio Aparato Digestivo, Hospital Universitario Mútua Terrassa, Barcelona, España
| | - Ana Gutiérrez Casbas
- Centro de Investigación Biomédica en Enfermedades Hepáticas y Digestivas, CIBERehd, Madrid, España; Servicio Aparato Digestivo, Hospital General Universitario Dr. Balmis e ISABIAL, Alicante, España
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Tiles-Sar N, Neuser J, de Sordi D, Baltes A, Preiss JC, Moser G, Timmer A. Psychological interventions for treatment of inflammatory bowel disease. Cochrane Database Syst Rev 2025; 4:CD006913. [PMID: 40243391 PMCID: PMC12005078 DOI: 10.1002/14651858.cd006913.pub3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 04/18/2025]
Abstract
BACKGROUND Persons with inflammatory bowel disease (IBD) have an increased risk of suffering from psychological problems. The association is assumed to be bi-directional. Psychological treatment is expected to improve quality of life (QoL), psychological issues and, possibly, disease activity. Many trials have tested various psychotherapy approaches, often in combination with educational modules or relaxation techniques, with inconsistent results. OBJECTIVES To assess the effects of psychological interventions on quality of life, emotional state and disease activity in persons of any age with IBD. SEARCH METHODS We searched Web of Science Core Collection, KCI-Korean Journal Database, Russian Science Citation Index, MEDLINE, Psyndex, PsycINFO, Embase, Cochrane Central Register of Controlled Trials, and LILACS from inception to May 2023. We also searched trial registries and major gastroenterological and selected other IBD-related conferences from 2019 until 2023. SELECTION CRITERIA Randomized controlled trials of psychological interventions in children or adults with IBD compared to no therapy, sham (i.e. simulated intervention), or other active treatment, with a minimum follow-up time of two months, were eligible for inclusion, irrespective of publication status and language of publication. Interventions included psychotherapy and other non-pharmacological interventions addressing cognitive or emotional processing, patient education, or relaxation techniques to improve individual health status. DATA COLLECTION AND ANALYSIS Two raters independently extracted data and assessed the study quality using the Risk of Bias 2 Tool. Pooled standardized mean differences (SMD) for continuous outcomes and relative risks (RR) for event data were calculated with 95% confidence intervals (CI), based on separate random-effects models by age group, type of therapy and type of control. An SMD of 0.2 was considered a minimally relevant difference. SMD ≥ 0.4 was considered a moderate effect. Group analyses were planned to examine differential effects by type of IBD, disease activity, psychological comorbidity, therapy subtype, and treatment intensity. Statistical heterogeneity was determined by calculating the I2 statistic. Publication bias was assessed by presenting a funnel plot and calculating the Eggers Test. GRADE Profiling was used to describe the certainty of the evidence for relevant results. MAIN RESULTS Sixty-eight studies were eligible. Of these, 48 had results reported in sufficient detail for inclusion in the meta-analyses (6111 adults, 294 children and adolescents). Two trials were excluded from the meta-analysis following sensitivity analysis and tests for asymmetry because of implausible results. Most studies used multimodular approaches. The risk of bias was moderate for most outcomes, and high for some. The most common problems in individual trials were the inability to blind participants and investigators and outcome measures susceptible to measurement bias. The main issues leading to downgrading of the certainty of the evidence were heterogeneity of results, low precision and high or moderate risk of bias in the included trials. Publication bias could not be shown for any of the inspected analyses. In adults, psychotherapy was slightly more effective than care-as-usual (CAU) in improving short-term QoL (SMD 0.23, 95% CI 0.12 to 0.34; I2 = 13%; 20 trials, 1572 participants; moderate-certainty), depression (SMD -0.27, 95% CI -0.39 to -0.16; I2 = 0%; 16 trials, 1232 participants; moderate-certainty), and anxiety (SMD -0.29, 95% CI -0.40 to -0.17; I2 = 1%; 15 studies, 1135 participants; moderate-certainty). The results for disease activity were not pooled due to high heterogeneity (I2 = 72%). Interventions which used patient education may also have small positive short-term effects on QoL (SMD 0.19, 95% CI 0.06 to 0.32; I2 = 11%; 12 trials, 1058 participants; moderate-certainty), depression (SMD -0.22, 95% CI -0.37 to -0.07; I2 = 11%; 7 studies, 765 participants; moderate-certainty) and anxiety (SMD -0.16, 95% CI -0.32 to 0.00; I2 = 10%; 6 studies, 668 participants; moderate-certainty). We did not find an effect of education on disease activity (SMD -0.09, 95% CI -0.28 to 0.10; I2 = 38%; 7 studies, 755 participants; low-certainty). Pooled results on the effects of relaxation techniques showed small effects on QoL (SMD 0.25, 95% CI 0.08 to 0.41; I2 = 30%; 12 studies, 916 participants; moderate-certainty), depression (SMD -0.18, 95% CI -0.35 to -0.02; I2 = 0%; 7 studies, 576 participants; moderate-certainty), and anxiety (SMD -0.26, 95% CI -0.43 to -0.09; I2 = 13%; 8 studies, 627 participants; moderate-certainty). Results for disease activity were not pooled due to high heterogeneity (I2 = 72%). In children and adolescents, multimodular psychotherapy increased quality of life (SMD 0.54, 95% CI 0.06 to 1.02; I2 = 19%; 3 studies, 91 participants; moderate-certainty). The results for anxiety were inconclusive (SMD -0.09; 95% CI 0.-64 to 0.46; 2 trials, 51 patients, very low-certainty). Pooled effects were not calculated for depressive symptoms. Disease activity was not assessed in any of the trials compared to CAU. In education, based on one study, there might be a positive effect of the intervention on quality of life (MD 7.1, 95% CI 2.18 to 12.02; 40 patients; low-certainty evidence) but possibly not on depression (MD -6, 95% CI -12.01 to 0.01; 41 patients; very low-certainty). Anxiety and disease activity were not assessed for this comparison. Regarding the effects of relaxation techniques on children and adolescents, all results were inconclusive (very low-certainty). AUTHORS' CONCLUSIONS Psychological interventions in adults are likely to improve the quality of life, depression and anxiety slightly. Psychotherapy is probably also effective for improving the quality of life in children and adolescents. The evidence suggests that psychological interventions may have little to no effect on disease activity. The interpretation of these results presents a challenge due to the clinical heterogeneity of the included trials, particularly concerning the type and various components of the common multimodular interventions. This complexity underscores the need for further research and exploration in this area.
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Affiliation(s)
- Natalia Tiles-Sar
- Division of Epidemiology and Biometry, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany
| | - Johanna Neuser
- Division of Epidemiology and Biometry, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany
| | - Dominik de Sordi
- Division of Epidemiology and Biometry, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany
| | - Anne Baltes
- The German Assocation for Crohn's Disease and Ulcerative Colitis (DCCV) e.V., Berlin, Germany
| | - Jan C Preiss
- Gastroenterologie, Diabetologie und Hepatologie, Vivantes Klinikum Neukölln, Berlin, Germany
| | - Gabriele Moser
- Clinic of Internal Medicine III, Medical University of Vienna, A-1090 Vienna, Austria
| | - Antje Timmer
- Division of Epidemiology and Biometry, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany
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Carbery I, Selinger CP, Todd O, Sebastian S. Considerations on Multimorbidity and Frailty in Inflammatory Bowel Diseases. J Crohns Colitis 2024; 18:ii46-ii54. [PMID: 39475079 PMCID: PMC11523040 DOI: 10.1093/ecco-jcc/jjae067] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/31/2024] [Revised: 04/27/2024] [Accepted: 05/03/2024] [Indexed: 11/02/2024]
Abstract
There are growing numbers of older people with inflammatory bowel diseases [IBD]. These older patients are more likely to have other comorbidities and polypharmacy, which can make recognizing and treating IBD complex. Frailty is a newer concept in the IBD field, and we are beginning to recognize the importance of this as a marker of biological age and its association with risk of adverse IBD-related outcomes. In this review article we aim to provide practical insight into the specific challenges facing older patients and their clinicians at each stage of the patient journey. We also discuss the latest understanding of the impact of frailty for these patients with IBD and highlight areas for future research.
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Affiliation(s)
- Isabel Carbery
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - Christian P Selinger
- Academic Unit for Ageing and Stroke Research, University of Leeds, Bradford Institute for Health Research, Bradford, UK
| | - Oliver Todd
- Academic Unit for Ageing and Stroke Research, University of Leeds, Bradford Institute for Health Research, Bradford, UK
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Horvát B, Orbán K, Dávid A, Sallay V, Rafael B, Njers S, Molnár T, Csabai M, Csordás G, Martos T. Enhancing self-management of patients with inflammatory bowel disease: the role of autonomy support in health goal pursuit. Therap Adv Gastroenterol 2024; 17:17562848241275315. [PMID: 39290331 PMCID: PMC11406597 DOI: 10.1177/17562848241275315] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/27/2024] [Accepted: 07/26/2024] [Indexed: 09/19/2024] Open
Abstract
Background Inflammatory bowel disease (IBD) is a chronic condition that significantly affects patients' physical, mental, and social health, as well as their overall quality of life. Effective management of the disease demands self-management skills, enabling patients to navigate the daily challenges associated with IBD, such as unpredictable flare-ups, frequent hospitalization, severe symptoms, pain, and physical changes. Objectives This study examines the motivational aspects of self-management for patients with IBD and focuses on the role of autonomy and directive support from healthcare professionals in enhancing their self-concordance and self-efficacy. Design From November 2022 to February 2023, a cross-sectional questionnaire study was conducted at the IBD Center of Internal Medicine Clinic in Szeged, Hungary. Methods A total of 374 adult patients with IBD completed the paper-pencil questionnaire, of whom 241 patients (64.4%) had Crohn's disease, and 133 patients (35.6%) had ulcerative colitis. Results Based on the findings of the path analysis (χ2 (8) = 18.914, p = 0.01, comparative fit index = 0.935, TLI = 0.837, root mean squared error of approximation = 0.06), autonomy support positively predicted self-concordance (β = 0.48) and self-efficacy (β = 0.02), particularly during disease relapse. In addition, self-concordance and self-efficacy predicted more positive (βs = 0.28 and 0.35) and fewer negative emotional experiences (βs = -0.09 and -0.20). The model's associations varied between the relapse and remission groups, indicating distinct impacts on different states of the disease. Conclusion Overall, autonomy support from healthcare professionals has been shown to enhance self-management in patients with IBD, particularly during disease relapse. Meanwhile, self-concordance and self-efficacy act as positive internal factors, thus reducing negative emotional experiences, especially during remission. In sum, this study underscores the need for further exploration of the motivational aspects of self-management and provides insights into developing interventions that promote the health behaviors of patients with IBD.
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Affiliation(s)
- Barbara Horvát
- Doctoral School of Clinical Medicine, University of Szeged, Dugonics tér 13, Szeged 6725, Hungary
| | - Kata Orbán
- Doctoral School of Clinical Medicine, University of Szeged, Szeged, Hungary
| | - Anett Dávid
- Department of Internal Medicine, University of Szeged, Szeged, Hungary
| | - Viola Sallay
- Institute of Psychology, University of Szeged, Szeged, Hungary
| | - Beatrix Rafael
- Department of Preventive Medicine, University of Szeged, Szeged, Hungary
| | - Sanela Njers
- Department of Cognitive and Neuropsychology, University of Szeged, Szeged, Hungary
| | - Tamás Molnár
- Department of Internal Medicine, University of Szeged, Szeged, Hungary
| | - Márta Csabai
- Department of Clinical Psychology, Károli Gáspár University of the Reformed Church, Budapest, Hungary
| | - Georgina Csordás
- Department of Developmental and Educational Psychology, Eszterházy Károly Catholic University, Budapest, Hungary
| | - Tamás Martos
- Institute of Psychology, University of Szeged, Szeged, Hungary
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Norouzkhani N, Bahari A, Shirvani JS, Faramarzi M, Eslami S, Tabesh H. Expert opinions on informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease: a Delphi consensus study. Front Psychol 2023; 14:1224279. [PMID: 37809295 PMCID: PMC10557489 DOI: 10.3389/fpsyg.2023.1224279] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/17/2023] [Accepted: 08/23/2023] [Indexed: 10/10/2023] Open
Abstract
Background The present study introduces informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease (IBD) through a three-round Expert Delphi Consensus Opinions method. Methods According to our previous scoping review, important items in the area of informational and supportive needs and sources of obtaining information were elucidated. After omitting duplicates, 56 items in informational needs, 36 items in supportive needs, and 36 items in sources of obtaining information were retrieved. Both open- and close-ended questions were designed for each category in the form of three questionnaires. The questionnaires were sent to selected experts from different specialties. Experts responded to the questions in the first round. Based on the feedback, questions were modified and sent back to the experts in the second round. This procedure was repeated up to the third round. Results In the first round, five items from informational needs, one item from supportive needs, and seven items from sources of obtaining information were identified as unimportant and omitted. Moreover, two extra items were proposed by the experts, which were added to the informational needs category. In the second round, seven, three, and seven items from informational needs, supportive needs, and sources of obtaining information were omitted due to the items being unimportant. In the third round, all the included items gained scores equal to or greater than the average and were identified as important. Kendall coordination coefficient W was calculated to be 0.344 for information needs, 0.330 for supportive needs, and 0.325 for sources of obtaining information, indicating a fair level of agreement between experts. Conclusions Out of 128 items in the first round, the omission of 30 items and the addition of two items generated a 100-item questionnaire for three sections of informational needs, supportive needs, and sources of obtaining information with a high level of convergence between experts' viewpoints.
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Affiliation(s)
- Narges Norouzkhani
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Ali Bahari
- Department of Internal Medicine, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
| | | | - Mahbobeh Faramarzi
- Department of General Courses, Population, Family and Spiritual Health Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran
| | - Saeid Eslami
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
- Pharmaceutical Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Hamed Tabesh
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
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Karimi N, Moore AR, Lukin A, Connor SJ. Health Communication Research Informs Inflammatory Bowel Disease Practice and Research: A Narrative Review. CROHN'S & COLITIS 360 2023; 5:otad021. [PMID: 37162798 PMCID: PMC10164291 DOI: 10.1093/crocol/otad021] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/20/2022] [Indexed: 05/11/2023] Open
Abstract
Background In the absence of targeted empirical evidence on effective clinical communication in inflammatory bowel disease (IBD), a broad overview of existing evidence on effective communication in healthcare and available recommendations for communication in telehealth is provided and mapped onto IBD research and practice. Methods A narrative literature review was conducted using Pubmed and Scopus databases and snowballing literature search. Results Evidence-based relationship building strategies include communicating emotions, acknowledging and addressing patients' hesitancy, and ensuring continued support. A particular recommendation regarding telehealth interaction is to avoid long stretches of talk. Effective informational strategies include facilitating and supporting information exchange and considering patients' preferences in decision-making. In teleconsultations, clinicians should ask direct questions about patients' emotional state, clarify their understanding of patients' concerns and check patients' understanding, address at least one patient-reported outcome when discussing the recommended treatment, and shorten the consultation where possible. Strategies for maximizing effective clinical communication in the spoken communicative mode include using infographics and simple language, and assessing adherence at the beginning of the consultation. For teleconsultations, clinicians are advised to allow patients to explain the reason for their call at the beginning of the teleconsultation, probe additional concerns early and before ending the teleconsultation, and be mindful of technical issues such as voice delays. Conclusions Use of question prompt lists, decision aids, micro-lessons, and communication training interventions for clinicians could be beneficial in IBD care. Further research into the implementation of such interventions as well as clinical communication concerns specific to IBD is warranted.
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Affiliation(s)
- Neda Karimi
- Address correspondence to: Neda Karimi, PhD, 1 Campbell Street, Liverpool, NSW 2170, Australia ()
| | | | - Annabelle Lukin
- Department of Linguistics, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia
| | - Susan J Connor
- South Western Sydney Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, Sydney, New South Wales, Australia
- School of Clinical Medicine, Faculty of Medicine and Health, The University of New South Wales, Sydney, New South Wales, Australia
- Department of Gastroenterology, Liverpool Hospital, Sydney, New South Wales, Australia
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Barros JRD, Ramdeen M, Rivera-Sequeiros A, Baima JP, Saad-Hossne R, Alencar RA, Sassaki LY. PROFILE OF INFLAMMATORY BOWEL DISEASE NURSES IN BRAZIL. ARQUIVOS DE GASTROENTEROLOGIA 2023; 60:300-308. [PMID: 37792758 DOI: 10.1590/s0004-2803.230302023-16] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 01/26/2023] [Accepted: 07/10/2023] [Indexed: 10/06/2023]
Abstract
•An identification of the profile of inflammatory bowel disease nurses in Brazil was peformed, and only four nurses worked exclusively with patients with inflammatory bowel disease. •The main areas of activity were outpatient clinics and ostomy care. •Nursing care was based on the nursing process, and the main topics approached in these appointments were treatment adherence and ostomy. •Nurses showed knowledge on immunosuppressive medications and biological therapy. Background - Nurses play a fundamental role within the inflammatory bowel disease (IBD) multidisciplinary team. Objective - To identify the profile of IBD nurses in Brazil and their work process organization and characterize the health services where they work. Methods - A questionnaire-based research was developed. The inclusion criteria were nurses with experience in IBD care, nurses with scientific research published in an indexed journal or in process, nurses with master's or doctorate degrees concluded or in progress, and educator nurses with expertise in IBD.Results - Seventy-four nurses were included, among whom 66 (89.19%) were women; their mean age was 40.63±9.98 years. Sixty-six percent work in the Southeast region, and more than half (54.05%) had a specialization course. Only four (5.41%) nurses worked exclusively with patients with IBD. The main areas of activity were outpatient clinics (39%) and ostomy care (35%). Nursing care was based on the nursing process (51.35%), and the main topics approached in nursing appointment were treatment adherence (72.97%), and ostomy (68.92%). Forty-seven (63.51%) nurses had knowledge on immunosuppressive medications and 52 (70.27%) on biological therapy. Most health services were integrated with a hospital that has clinical (72.97%) and surgical hospitalization units (67.57%), and 46 (62.16%) of them had an infusion center. Conclusion - Describing the work process of IBD nurses can supplement their organization of the IBD assistance process, as they do not follow any specific consensus. In addition, the characteristics necessary for IBD care are not found in all health services.
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Affiliation(s)
| | - Madhoor Ramdeen
- St Mark's Hospital, Department of Inflammatory Bowel Disease, London, England
| | | | - Júlio Pinheiro Baima
- São Paulo State University, Medical School, Department of Internal Medicine, São Paulo, Brazil
| | - Rogério Saad-Hossne
- São Paulo State University, Medical School, Department of Surgery, São Paulo, Brazil
| | - Rúbia Aguiar Alencar
- São Paulo State University, Medical School, Department of Nursing, São Paulo, Brazil
| | - Ligia Yukie Sassaki
- São Paulo State University, Medical School, Department of Internal Medicine, São Paulo, Brazil
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Kamp K, Clark-Snustad K, Yoo L, Winders S, Cain K, Levy RL, Dey N, Lee S, Keefer L, Heitkemper M. A Comprehensive Self-Management Intervention for Inflammatory Bowel Disease (CSM-IBD): Protocol for a Pilot Randomized Controlled Trial. JMIR Res Protoc 2023; 12:e46307. [PMID: 37285195 DOI: 10.2196/46307] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/17/2023] [Revised: 04/27/2023] [Accepted: 04/30/2023] [Indexed: 06/08/2023] Open
Abstract
BACKGROUND Despite pharmacological treatment, individuals with inflammatory bowel disease (IBD) experience a variety of symptoms, including abdominal pain, fatigue, anxiety, and depression. Few nonmedical self-management interventions are available for people with IBD. A validated comprehensive self-management (CSM) intervention is effective for patients with irritable bowel syndrome who can have symptoms similar to those of individuals with IBD. We created a modified CSM intervention tailored to individuals with IBD (CSM-IBD). The CSM-IBD is an 8-session program delivered over 8-12 weeks with check-ins with a registered nurse. OBJECTIVE The primary objective of this pilot study is to determine the feasibility and acceptability of study procedures and the CSM-IBD intervention and to evaluate preliminary efficacy on quality of life and daily symptoms for a future randomized controlled trial. Additionally, we will examine the association of socioecological, clinical, and biological factors with symptoms at baseline and response to intervention. METHODS We are conducting a pilot randomized controlled trial of the CSM-IBD intervention. Participants aged 18-75 years who are experiencing at least 2 symptoms are eligible for inclusion. We plan to enroll 54 participants who will be randomized (2:1) into the CSM-IBD program or usual care. Patients in the CSM-IBD program will have 8 intervention sessions. Primary study outcomes include the feasibility of recruitment, randomization, and data or sample collection, as well as the acceptability of study procedures and interventions. Preliminary efficacy outcome variables include quality of life and symptoms. Outcomes data will be assessed at baseline, immediately post intervention, and 3 months post intervention. Participants in the usual care group will have access to the intervention after study participation. RESULTS This project is funded by the National Institutes of Nursing Research and reviewed by the University of Washington's institutional review board. Recruitment began in February 2023. As of April 2023, we have enrolled 4 participants. We expect the study to be completed by March 2025. CONCLUSIONS This pilot study will evaluate the feasibility and efficacy of a self-management intervention (a web-based program with weekly check-ins with a registered nurse) that aims to improve symptom management in individuals with IBD. In the long term, we aim to validate a self-management intervention to improve patient quality of life, reduce direct and indirect costs related to IBD, and be culturally appropriate and accessible, particularly in rural and underserved communities. TRIAL REGISTRATION ClinicalTrials.gov NCT05651542; https://clinicaltrials.gov/ct2/show/NCT05651542. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) PRR1-10.2196/46307.
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Affiliation(s)
- Kendra Kamp
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Kindra Clark-Snustad
- Division of Gastroenterology, School of Medicine, University of Washington, Seattle, WA, United States
| | - Linda Yoo
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Samantha Winders
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Kevin Cain
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
| | - Rona L Levy
- School of Social Work, University of Washington, Seattle, WA, United States
| | - Neelendu Dey
- Fred Hutchinson Cancer Center, Seattle, WA, United States
| | - Scott Lee
- Division of Gastroenterology, School of Medicine, University of Washington, Seattle, WA, United States
| | | | - Margaret Heitkemper
- Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, United States
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Gordon M, Sinopoulou V, Ibrahim U, Abdulshafea M, Bracewell K, Akobeng AK. Patient education interventions for the management of inflammatory bowel disease. Cochrane Database Syst Rev 2023; 5:CD013854. [PMID: 37172140 PMCID: PMC10162698 DOI: 10.1002/14651858.cd013854.pub2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 05/14/2023]
Abstract
BACKGROUND Inflammatory bowel disease (IBD) is a life-long condition for which currently there is no cure. Patient educational interventions deliver structured information to their recipients. Evidence suggests patient education can have positive effects in other chronic diseases. OBJECTIVES To identify the different types of educational interventions, how they are delivered, and to determine their effectiveness and safety in people with IBD. SEARCH METHODS On 27 November 2022, we searched CENTRAL, Embase, MEDLINE, ClinicalTrials.gov, and WHO ICTRP with no limitations to language, date, document type, or publication status. Any type of formal or informal educational intervention, lasting for any time, that had content focused directly on knowledge about IBD or skills needed for direct management of IBD or its symptoms was included. Delivery methods included face-to-face or remote educational sessions, workshops, guided study via the use of printed or online materials, the use of mobile applications, or any other method that delivers information to patients. SELECTION CRITERIA All published, unpublished and ongoing randomised control trials (RCTs) that compare educational interventions targeted at people with IBD to any other type of intervention or no intervention. DATA COLLECTION AND ANALYSIS Two review authors independently conducted data extraction and risk of bias assessment of the included studies. We analysed data using Review Manager Web. We expressed dichotomous and continuous outcomes as risk ratios (RRs) and mean differences (MDs) with 95% confidence intervals (CIs). We assessed the certainty of the evidence using GRADE methodology. MAIN RESULTS We included 14 studies with a total of 2708 randomised participants, aged 11 to 75 years. Two studies examined populations who all had ulcerative colitis (UC); the remaining studies examined a mix of IBD patients (UC and Crohn's disease). Studies considered a range of disease activity states. The length of the interventions ranged from 30 minutes to 12 months. Education was provided in the form of in-person workshops/lectures, and remotely via printed materials or multimedia, smartphones and internet learning. Thirteen studies compared patient education interventions plus standard care against standard care alone. The interventions included seminars, information booklets, text messages, e-learning, a multi professional group-based programme, guidebooks, a staff-delivered programme based on an illustrated book, a standardised programme followed by group session, lectures alternating with group therapy, educational sessions based on an IBD guidebook, internet blog access and text messages, a structured education programme, and interactive videos. Risk of bias findings were concerning in all judgement areas across all studies. No single study was free of unclear or high of bias judgements. Reporting of most outcomes in a homogeneous fashion was limited, with quality of life at study end reported most commonly in six of the 14 studies which allowed for meta-analysis, with all other outcomes reported in a more heterogeneous manner that limited wider analysis. Two studies provided data on disease activity. There was no clear difference in disease activity when patient education (n = 277) combined with standard care was compared to standard care (n = 202). Patient education combined with standard care is probably equivalent to standard care in reducing disease activity in patients with IBD (standardised mean difference (SMD) -0.03, 95% CI -0.25 to 0.20), moderate-certainty evidence. Two studies provided continuous data on flare-up/relapse. There was no clear difference for flare-ups or relapse when patient education (n = 515) combined with standard care was compared to standard care (n = 507), as a continuous outcome. Patient education combined with standard care is probably equivalent to standard care in reducing flare-ups or relapse in patients with IBD (MD -0.00, 95% CI -0.06 to 0.05; moderate-certainty evidence). Three studies provided dichotomous data on flare-up/relapse. The evidence is very uncertain on whether patient education combined with standard care (n = 157) is different to standard care (n = 150) in reducing flare-ups or relapse in patients with IBD (RR 0.94, 95% CI 0.41 to 2.18; very low-certainty evidence). Six studies provided data on quality of life. There was no clear difference in quality of life when patient education combined with standard care (n = 721) was compared to standard care (n = 643). Patient education combined with standard care is probably equivalent to standard care in improving quality of life in patients with IBD (SMD 0.08, 95% CI -0.03 to 0.18; moderate-certainty evidence). The included studies did not report major differences on healthcare access. Medication adherence, patient knowledge and change in quality of life showed conflicting results that varied between no major differences and differences in favour of the educational interventions. Only five studies reported on adverse events. Four reported zero total adverse events and one reported one case of breast cancer and two cases of surgery in their interventions groups, and zero adverse events in their control group. Two studies compared delivery methods of patient education, specifically: web-based patient education interventions versus colour-printed books or text messages; and one study compared frequency of patient education, specifically: weekly educational text messages versus once every other week educational text messages. These did not show major differences for disease activity and quality of life. Other outcomes were not reported. AUTHORS' CONCLUSIONS The ways in which patient educational support surrounding IBD may impact on disease outcomes is complex. There is evidence that education added to standard care is probably of no benefit to disease activity or quality of life when compared with standard care, and may be of no benefit for occurrence of relapse when compared with standard care. However, as there was a paucity of specific information regarding the components of education or standard care, the utility of these findings is questionable. Further research on the impact of education on our primary outcomes of disease activity, flare-ups/relapse and quality of life is probably not indicated. However, further research is necessary, which should focus on reporting details of the educational interventions and study outcomes that educational interventions could be directly targeted to address, such as healthcare access and medication adherence. These should be informed by direct engagement with stakeholders and people affected by Crohn's and colitis.
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Affiliation(s)
- Morris Gordon
- School of Medicine, University of Central Lancashire, Preston, UK
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10
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Intensive Outpatient Treatment of Pediatric Rumination Syndrome in the Era of Telemedicine. J Pediatr Gastroenterol Nutr 2023; 76:278-281. [PMID: 35897133 DOI: 10.1097/mpg.0000000000003577] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/10/2022]
Abstract
OBJECTIVES We have had success treating children with severe rumination syndrome using a multidisciplinary intensive outpatient program (IOP) involving multiple treatment sessions daily. During the coronavirus disease 2019 (COVID-19) pandemic, we temporarily transitioned care to telemedicine. The objective of this study is to compare outcomes of patients with rumination syndrome who completed IOP treatment in person versus by telemedicine. METHODS We performed a retrospective review of patients diagnosed with rumination syndrome who participated in IOP treatment from 2018 to 2020. Similar treatment sessions were performed involving medical and behavioral techniques provided by a multidisciplinary team during telemedicine visits. Families/patients were asked to complete a survey outlining their child's current rumination symptom severity and review the IOP. RESULTS We included 34 patients (79% F, median age 15 years, range 7-19 years) who completed IOP treatment. Twenty-six patients (76%) were treated in person and 8 patients (24%) by telemedicine. For patients treated in person, 76% (19/25) had improvement in symptoms while 16% (4/25) had complete resolution of symptoms. For patients treated by telemedicine, 88% (7/8) had improvement in their symptoms. There were no significant differences between groups in likelihood of improvement. Overall, 78% (18/23) preferred in person therapy while 17% (4/23) did not have a preference. All 18 of the in-person cohort who completed follow-up surveys preferred in-person management. CONCLUSIONS Multidisciplinary intensive outpatient treatment for children and adolescents with severe rumination syndrome is effective. Although telemedicine may be an alternative to in person therapy, majority of families prefer in person visits.
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11
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Dasharathy SS, Long MD, Lackner JM, Ben-Ami Shor D, Yang L, Bar N, Ha C, Weiss GA. Psychological Factors Associated With Adherence to Oral Treatment in Ulcerative Colitis. Inflamm Bowel Dis 2023; 29:97-102. [PMID: 35325148 DOI: 10.1093/ibd/izac051] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/29/2021] [Indexed: 02/05/2023]
Abstract
INTRODUCTION Medication nonadherence in patients with ulcerative colitis (UC) can result in frequent relapses, severe disease, and higher risk of colorectal cancer. Behavioral models relying on motivation and perceived competence, like the self-determination theory (SDT), have been implicated in nonadherence; however, the SDT has not been evaluated in the adult UC population. We sought to examine the association between adherence to oral medications in patients with UC and psychological distress, relationship with health care providers, motivation, and competence. METHODS We performed a cross-sectional study within the Inflammatory Bowel Disease (IBD) Partners online registry in which participants completed a baseline survey including demographic information, IBD history, symptoms, medication adherence, and psychosocial factors. Members of the registry with a diagnosis of UC received an online follow-up survey that included baseline questionnaires and assessment of competence, motivation, and patient-physician relationship. Logistic regression models were performed to determine the relationship between psychosocial factors, adherence modifiers, and medication adherence. RESULTS Of the 410 UC patients included, 29% had low adherence to their medications, 36% had medium adherence, and 34% had high adherence. In the multivariable analysis, younger patients, those with a lower perceived competence, and those with worse relationship with their providers were more likely to have lower adherence to their medications. CONCLUSIONS Poor adherence to oral medications in UC was associated with lower perceived competence and worse relationship with providers. Further interventions based on the SDT can potentially improve adherence and optimize patient care.
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Affiliation(s)
- Sonya S Dasharathy
- Vatche and Tamar Manoukian Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
| | - Millie D Long
- Division of Gastroenterology, University of North Carolina, Chapel Hill, NC, USA
| | - Jeffrey M Lackner
- Division of Behavioral Medicine, Department of Medicine, Jacobs School of Medicine, University at Buffalo, Buffalo, NY, USA
| | - Dana Ben-Ami Shor
- Department of Gastroenterology, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel
| | - Liu Yang
- Vatche and Tamar Manoukian Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
| | - Nir Bar
- Department of Gastroenterology, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel
| | - Christina Ha
- Karsh Division of Gastroenterology and Hepatology, Cedars-Sinai Medical Center, Los Angeles, CA, USA
| | - Guy A Weiss
- Vatche and Tamar Manoukian Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
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12
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Iizawa M, Hirose L, Nunotani M, Nakashoji M, Tairaka A, Fernandez JL. A Systematic Review of Self-Management Interventions for Patients with Inflammatory Bowel Disease. Inflamm Intest Dis 2023; 8:1-12. [PMID: 37404383 PMCID: PMC10315013 DOI: 10.1159/000530021] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/30/2022] [Accepted: 03/01/2023] [Indexed: 07/06/2023] Open
Abstract
Introduction Previous studies have reported the effectiveness of inflammatory bowel disease (IBD) self-management. However, it is unclear which types of self-management interventions are effective. We conducted a systematic literature review to clarify the status and efficacy of self-management interventions for IBD. Methods Searches were performed in databases including Embase, Medline, and Cochrane Library. Randomized, controlled studies of interventions in adult human participants with IBD involving a self-management component published in English from 2000 to 2020 were included. Studies were stratified based on study design, baseline demographic characteristics, methodological quality, and how outcomes were measured and analyzed for statistically significant improvements in outcomes, such as psychological health, quality of life, and healthcare resource usage. Results Among 50 studies included, 31 considered patients with IBD and 14 and 5 focused on patients with ulcerative colitis and Crohn's disease, respectively. Improvements in an outcome were reported in 33 (66%) studies. Most of the interventions that significantly improved an outcome index were based on symptom management and many of these were also delivered in combination with provision of information. We also note that among effective interventions, many were conducted with individualized and patient-participatory activities, and multidisciplinary healthcare practitioners were responsible for delivery of the interventions. Conclusion Ongoing interventions that focus on symptom management with provision of information may support self-management behavior in patients with IBD. A participatory intervention targeting individuals was suggested to be an effective intervention method.
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Affiliation(s)
- Masami Iizawa
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Lisa Hirose
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Maya Nunotani
- School of Nursing, Mukogawa Women’s University, Hyogo, Japan
| | - Mikiko Nakashoji
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Ai Tairaka
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
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13
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Roukas C, Syred J, Gordeev VS, Norton C, Hart A, Mihaylova B. Development and test-retest reliability of a new, self-report questionnaire assessing healthcare use and personal costs in people with inflammatory bowel disease: the Inflammatory Bowel Disease Resource Use Questionnaire (IBD-RUQ). Frontline Gastroenterol 2022; 14:59-67. [PMID: 36561790 PMCID: PMC9763637 DOI: 10.1136/flgastro-2022-102182] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/29/2022] [Accepted: 07/07/2022] [Indexed: 02/04/2023] Open
Abstract
BACKGROUND AND AIMS The increasing prevalence of inflammatory bowel disease (IBD) poses a substantial economic burden globally on health systems and societies. Validated instruments to collect data on healthcare and other service utilisation by patients with IBD are lacking. We developed a self-report patient questionnaire to capture key resource utilisation from health services, patient and societal perspectives. METHODS The IBD Resource Use Questionnaire (IBD-RUQ), developed by a multidisciplinary team, including patients, comprises 102 items across the six categories of outpatient visits, diagnostics, medication, hospitalisations, employment and out-of-pocket expenses over the past three months. The test-retest reliability of the IBD-RUQ was studied by administering it twice among patients with IBD with a 2-week time gap. The intraclass correlation coefficients and the average cost from the healthcare, societal and patient perspectives, between test and retest assessments, overall and by service category, were summarised. RESULTS The IBD-RUQ captures health service use, employment and out-of-pocket expenses. Of 55 patients who completed the first questionnaire, 48 completed the retest questionnaires and were included in the analyses. Test-retest reliability for categories of medications, diagnostics, specialist outpatient and inpatient services, and days off work due to IBD ranged from moderate to excellent; primary care visits showed more limited reliability. The annualised average self-reported health service, out-of-pocket and loss of productivity costs were £4844, £320 and £545 per patient, respectively. CONCLUSIONS The IBD-RUQ is a reliable and valid self-report measure of resource utilisation in adults with IBD and can be used to measure costs associated with IBD.
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Affiliation(s)
- Chris Roukas
- Wolfson Institute of Population Health, Queen Mary University of London, London, UK
| | - Jonathan Syred
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK
| | | | - Christine Norton
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK
| | - Ailsa Hart
- Department of Surgery and Cancer, St Mark's Hospital, Harrow, UK
| | - Borislava Mihaylova
- Wolfson Institute of Population Health, Queen Mary University of London, London, UK,Nuffield Department of Population Health, University of Oxford, Oxford, UK
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14
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Grover S, Fitzpatrick A, Azim FT, Ariza-Vega P, Bellwood P, Burns J, Burton E, Fleig L, Clemson L, Hoppmann CA, Madden KM, Price M, Langford D, Ashe MC. Defining and implementing patient-centered care: An umbrella review. PATIENT EDUCATION AND COUNSELING 2022; 105:1679-1688. [PMID: 34848112 DOI: 10.1016/j.pec.2021.11.004] [Citation(s) in RCA: 67] [Impact Index Per Article: 22.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 04/03/2021] [Revised: 11/02/2021] [Accepted: 11/08/2021] [Indexed: 06/13/2023]
Abstract
OBJECTIVES Patient- or person-centered care (PCC) integrates people's preferences, values, and beliefs into health decision-making. Gaps exist for defining and implementing PCC; therefore, we aimed to identify core elements of PCC and synthesize implementation facilitators and barriers. METHODS We conducted an overview of systematic reviews (umbrella review) and included peer-reviewed literature for adults in community/primary care settings. Two reviewers independently screened at Level 1 and 2, extracted data and appraised the quality of reviews. Three reviewers conducted a thematic analysis, and we present a narrative synthesis of findings. RESULTS There were 2371 citations screened, and 10 systematic reviews included. We identified 10 PCC definitions with common elements, such as patient empowerment, patient individuality, and a biopsychosocial approach. Implementation factors focused on communication, training healthcare providers, and organizational structure. CONCLUSIONS We provide a synthesis of key PCC elements to include in a future definition, and an overview of elements to consider for implementing PCC into practice. We extend existing literature by identifying clinician empowerment and culture change at the systems-level as two future areas to prioritize to enable routine integration of PCC into practice. PRACTICE IMPLICATIONS Findings may be useful for researchers and or health providers delivering and evaluating PCC.
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Affiliation(s)
| | | | | | | | | | - Jane Burns
- The University of British Columbia, Vancouver, Canada; Vancouver Coastal Health Authority, Vancouver, Canada
| | - Elissa Burton
- Curtin School of Allied Health, Curtin University, Perth, Australia
| | | | | | - Christiane A Hoppmann
- Department of Psychology, The University of British Columbia, Vancouver, Canada; Centre for Hip Health and Mobility, Vancouver, Canada
| | - Kenneth M Madden
- The University of British Columbia, Vancouver, Canada; Vancouver Coastal Health Authority, Vancouver, Canada; Centre for Hip Health and Mobility, Vancouver, Canada
| | - Morgan Price
- The University of British Columbia, Vancouver, Canada
| | - Dolores Langford
- The University of British Columbia, Vancouver, Canada; Vancouver Coastal Health Authority, Vancouver, Canada
| | - Maureen C Ashe
- The University of British Columbia, Vancouver, Canada; Centre for Hip Health and Mobility, Vancouver, Canada.
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van Deen WK, Khalil C, Dupuy TP, Bonthala NN, Spiegel BMR, Almario CV. Assessment of inflammatory bowel disease educational videos for increasing patient engagement and family and friends' levels of understanding. PATIENT EDUCATION AND COUNSELING 2022; 105:660-669. [PMID: 34154860 PMCID: PMC9910446 DOI: 10.1016/j.pec.2021.06.006] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/30/2020] [Revised: 05/11/2021] [Accepted: 06/05/2021] [Indexed: 05/04/2023]
Abstract
OBJECTIVE We developed five educational videos through a user-centered approach for patients with inflammatory bowel diseases (IBD) and their families and friends. Here, we assessed if IBD patient activation and family and friends' abilities to understand IBD patients' thoughts, feelings, and behaviors (i.e., perspective taking) changed after watching the videos. METHODS Through a pre-post survey, we assessed patient activation and perspective taking levels in people with a self-reported IBD diagnosis and their family and friends, respectively, before and after watching one of the videos. RESULTS Among 767 participants with IBD, patient activation scores increased significantly after watching each video. In regression analyses, patient activation levels were less likely to increase in biologic-naïve participants after viewing the coping video. Among 232 people who knew someone with IBD, perspective taking scores increased significantly in 8/9 domains, which was more likely to occur among women. CONCLUSIONS Educational videos developed through a user-centered approach were associated with higher self-reported IBD patient activation scores and perspective taking levels among family and friends. PRACTICE IMPLICATIONS These videos, which are now widely disseminated on social media, serve as a model for how to create educational materials for improving patient activation and empathy in the social media era.
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Affiliation(s)
- Welmoed K van Deen
- Division of Health Services Research, Cedars-Sinai, Los Angeles, CA, United States; Department of Medicine, Cedars-Sinai, Los Angeles, CA, United States; Erasmus School of Health Policy and Management, Health Technology Assessment Section, Erasmus University Rotterdam, Rotterdam, The Netherlands
| | - Carine Khalil
- Division of Health Services Research, Cedars-Sinai, Los Angeles, CA, United States; LIRAES, Paris Descartes University, Paris, France
| | - Taylor P Dupuy
- Division of Health Services Research, Cedars-Sinai, Los Angeles, CA, United States
| | - Nirupama N Bonthala
- Department of Medicine, Cedars-Sinai, Los Angeles, CA, United States; Inflammatory Bowel Disease Center, Cedars-Sinai, Los Angeles, CA, United States; Karsh Division of Gastroenterology and Hepatology, Cedars-Sinai, Los Angeles, CA, United States
| | - Brennan M R Spiegel
- Division of Health Services Research, Cedars-Sinai, Los Angeles, CA, United States; Department of Medicine, Cedars-Sinai, Los Angeles, CA, United States; Karsh Division of Gastroenterology and Hepatology, Cedars-Sinai, Los Angeles, CA, United States
| | - Christopher V Almario
- Division of Health Services Research, Cedars-Sinai, Los Angeles, CA, United States; Department of Medicine, Cedars-Sinai, Los Angeles, CA, United States; Karsh Division of Gastroenterology and Hepatology, Cedars-Sinai, Los Angeles, CA, United States.
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16
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Caron B, D'Amico F, Danese S, Peyrin-Biroulet L. Cluster Randomized Trials: Lessons for Inflammatory Bowel Disease Trials. J Crohns Colitis 2022; 16:312-318. [PMID: 34389850 DOI: 10.1093/ecco-jcc/jjab149] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/09/2023]
Abstract
Randomized clinical trials are the gold standard for the development of new drugs. Clinical trials have become increasingly complex, in particular in the field of inflammatory bowel diseases. For this reason, a new study design called 'cluster randomized trial' has been introduced. Cluster randomized trials randomly assign groups of individuals within a population of interest, such as people in a particular research site, clinic or hospital, and measure the effects of an intervention at the individual level. In contrast to individual randomization, cluster randomization permits the evaluation of a cluster-level intervention, may be logistically simpler and less expensive than a conventional randomized trial, and can help reduce the effect of treatment contamination. An important aspect requiring particular attention in cluster randomized trials is the risk for imbalance of covariates at baseline which decreases the statistical power and precision of the results, and reduces face validity and credibility of the trial results. A variety of restricted randomization methods have been proposed to minimize risk of imbalance. Our aim here is to clarify the advantages and drawbacks of cluster randomized trials in order to properly interpret study results and to identify their role in upcoming inflammatory bowel disease trials.
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Affiliation(s)
- Bénédicte Caron
- Department of Gastroenterology and Inserm NGERE U1256, Nancy University Hospital, University of Lorraine, Vandoeuvre-lès-Nancy, France
| | - Ferdinando D'Amico
- Gastroenterology and Endoscopy, IRCCS Ospedale San Raffaele and University Vita-Salute San Raffaele, Milano, Italy.,Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, Milan, Italy
| | - Silvio Danese
- Gastroenterology and Endoscopy, IRCCS Ospedale San Raffaele and University Vita-Salute San Raffaele, Milano, Italy
| | - Laurent Peyrin-Biroulet
- Department of Gastroenterology and Inserm NGERE U1256, Nancy University Hospital, University of Lorraine, Vandoeuvre-lès-Nancy, France
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Shinzaki S, Sakagami K, Matsumoto M, Takehara T, Ito H. Nurse-Provided Medication Guidance for Improving Drug Adherence to Thiopurines in Outpatients With Inflammatory Bowel Disease: A Single-Center Prospective Study. CROHN'S & COLITIS 360 2021; 4:otab081. [PMID: 36777553 PMCID: PMC9802065 DOI: 10.1093/crocol/otab081] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/14/2021] [Indexed: 11/14/2022] Open
Abstract
Background and Aims Drug adherence is critically important for patients on thiopurines. We examined whether nurse-provided medication guidance improves drug adherence to thiopurines and clinical activity in patients with inflammatory bowel disease (IBD). Methods IBD outpatients taking a stable dose of thiopurines for 1 year were enrolled. After a baseline survey including the Morisky Medication Adherence Scale (MMAS)-8, nurses provided medication guidance to each patient using a specialized leaflet. The same survey was conducted 2 and 6 months after the guidance. Results Among 110 enrolled patients, 74 met the analysis criteria. In the low adherence group (MMAS-8 <6), the median MMAS-8 score significantly increased from 4 (range 1-5.75) to 5.25 (2-7) at 2 months (P = .0135) to 5.625 (2.5-7.75) at 6 months (P = .0004), but not in overall or the high adherence group (MMAS-8 ≥6). Older age (≥43 years, odds ratio [OR] = 5.63, 95% confidence interval [CI]: 1.59-19.9, P = .0074) and shorter disease duration (<129 months, OR = 6.78, 95% CI: 1.77-26.0, P = .0052) were independently associated with high adherence. Although clinical activity scores did not change during the observation period, the overall mean corpuscular volume (MCV) level significantly increased from 92.3 fL (61.4-105.5) to 92.5 (73.7-107.8) at 2 months (P = .0288) and 93.9 (74.4-107.6) at 6 months (P = .0062). MCV levels significantly increased in the low adherence group at 6 months (92.2 [72.2-105.5] to 94.0 [74.4-107.6], P = .0392) and tended to increase in the high adherence group (92.3 [61.4-101.2] to 93.6 [74.9-99.7], P = .0651). Conclusions Nurse-provided medication guidance improved drug adherence to thiopurines in IBD patients with low adherence and can also benefit those with high adherence.
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Affiliation(s)
- Shinichiro Shinzaki
- Department of Gastroenterology and Hepatology, Osaka University Graduate School of Medicine, Osaka, Japan
| | | | | | - Tetsuo Takehara
- Department of Gastroenterology and Hepatology, Osaka University Graduate School of Medicine, Osaka, Japan
| | - Hiroaki Ito
- Kinshukai Infusion Clinic, Osaka, Japan,Address correspondence to: Hiroaki Ito, MD, PhD, Kinshukai Infusion Clinic, 3-1-B9, Ofukacho, Kita-ku, Osaka 530-0011, Japan ()
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Alshaikh OM, Alkhonain IM, Anazi MS, Alahmari AA, Alsulami FO, Alsharqi AA. Assessing the Degree of Gastroesophageal Reflux Disease (GERD) Knowledge Among the Riyadh Population. Cureus 2021; 13:e19569. [PMID: 34917444 PMCID: PMC8670576 DOI: 10.7759/cureus.19569] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/14/2021] [Indexed: 11/05/2022] Open
Abstract
Background Gastroesophageal reflux disease (GERD) is a chronic disease mainly characterized by heartburn and acid regurgitation. To our knowledge, there have been a limited number of studies in Saudi Arabia looking at the knowledge level among the general population regarding this disease and its associated factors. Therefore, this study aims to identify the knowledge level of the disease and its associated factors, assess the prevalence of GERD among the Riyadh general population, and assess the need for educational programs for GERD. Methodology A cross-sectional study was conducted among the general public in Riyadh, Saudi Arabia. The degree of GERD knowledge was assessed by translating and editing Jorgen Urnes' 24-item questionnaire into Arabic. In addition, six questions related to the symptoms and complications of GERD were added. Convenience sampling was done by using a Google form to distribute the questionnaire. The questionnaire assesses GERD knowledge by asking about the signs, symptoms, risk factors, predisposing factors, and management of GERD. Statistical analysis was performed using R v. 3.6.3 (https://cran.r-project.org/bin/windows/base/old/3.6.3/). Counts and percentages were used to summarize the distribution of categorical variables. Results The questionnaire was completed by 664 respondents (48.2% males and 51.8% females). The average age of the included respondents was 34.1 ± 12.8 years and Saudis represented 97% of the included respondents. The majority of the respondents had heard of GERD (83%). The average number of correct answers was 12.7 ± 6.1. In total, 40 respondents did not answer any questions correctly. Approximately one-third of respondents answered >50% of the questions correctly (n = 250, 37.6%). Approximately half of the respondents identified all risk factors for GERD. Other common risk factors identified included caffeine (23.6%), fast food (26.8%), and smoking (17.6%). Slightly more than a quarter of the respondents reported being diagnosed with GERD (28.8%). Knowledge was significantly higher among respondents who had received a diagnosis of GERD. A statistically significant positive association was observed between age and knowledge (r = 0.19, p < 0.001). Conclusion The study shows a relatively good knowledge level compared to previously reported figures in Saudi Arabia and worldwide. Educational programs for GERD should be increased in Saudi Arabia and more health conferences and teaching school students of the disease should be highlighted to increase the general knowledge of this disease in the Kingdom of Saudi Arabia (KSA).
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Affiliation(s)
- Omalkhaire M Alshaikh
- Internal Medicine and Endocrinology, Imam Mohammad Ibn Saud Islamic University, College of Medicine, Riyadh, SAU
| | - Issa M Alkhonain
- Family Medicine, Imam Mohammad Ibn Saud Islamic University, College of Medicine, Riyadh, SAU
| | - Muath S Anazi
- Internal Medicine, Imam Mohammad Ibn Saud Islamic University, College of Medicine, Riyadh, SAU
| | - Albaraa A Alahmari
- Medicine, Imam Mohammad Ibn Saud Islamic University, College of Medicine, Riyadh, SAU
| | | | - Abdulrhman A Alsharqi
- Medicine, Imam Mohammad Ibn Saud Islamic University, College of Medicine, Riyadh, SAU
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Connor SJ, Sechi A, Andrade M, Deuring JJ, Witcombe D. Ulcerative Colitis Narrative findings: Australian survey data comparing patient and physician disease management views. JGH OPEN 2021; 5:1033-1040. [PMID: 34584972 PMCID: PMC8454486 DOI: 10.1002/jgh3.12627] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 01/22/2021] [Revised: 06/24/2021] [Accepted: 07/19/2021] [Indexed: 11/11/2022]
Abstract
Background and Aim The Global Ulcerative Colitis (UC) Narrative Survey aimed to evaluate the impact of UC, perceptions of UC burden, and management approaches. Here, we present data from patients and physicians in Australia. Methods Surveys, fielded by The Harris Poll, were completed by 215 patients with UC and 90 physicians, between August 2017 and February 2018. Surveys included questions on disease characteristics, impact on life, communication with physicians, and patient knowledge of UC. Results are presented descriptively from all respondents (with no imputation for missing data). Results Based on medication history, 84% of patients had moderate to severe UC. Diagnostic delay was on average 1.9 (SD 5.0) years and 48% of patients had waited ≥1 year for diagnosis. Nearly two‐thirds (65%) of patients considered themselves to be in remission, with 97% also reporting a flare in the past year. The majority (92%) of patients were satisfied with their UC medication and, if their treatment made them feel “good enough,” many (75%) would not consider an alternative. Most (90%) patients were satisfied with communication with their physician; however, only 48% felt comfortable raising emotional concerns. Both patients and physicians desired more time during routine appointments. Patients had gaps in their knowledge of UC, which physicians mostly recognized. Conclusions The Australian survey results highlighted the diagnostic delay and burden of UC patients' experience, gaps in patients' knowledge of UC, and challenges in patient–physician communication. Compared with the overall Global UC Narrative Survey, patients in Australia reported a high burden of disease.
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Affiliation(s)
- Susan J Connor
- Department of Gastroenterology Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute of Applied Medical Research Liverpool New South Wales Australia
| | - Alexandra Sechi
- Department of Gastroenterology Liverpool Hospital Liverpool New South Wales Australia
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Norton C, Syred J, Kerry S, Artom M, Sweeney L, Hart A, Czuber-Dochan W, Taylor SJC, Mihaylova B, Roukas C, Aziz Q, Miller L, Pollok R, Saxena S, Stagg I, Terry H, Zenasni Z, Dibley L, Moss-Morris R. Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial. Trials 2021; 22:516. [PMID: 34344432 PMCID: PMC8329619 DOI: 10.1186/s13063-021-05466-4] [Citation(s) in RCA: 19] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/14/2020] [Accepted: 07/16/2021] [Indexed: 12/28/2022] Open
Abstract
BACKGROUND Despite being in clinical remission, many people with inflammatory bowel disease (IBD) live with fatigue, chronic abdominal pain and bowel urgency or incontinence that limit their quality of life. We aim to test the effectiveness of an online self-management programme (BOOST), developed using cognitive behavioural principles and a theoretically informed logic model, and delivered with facilitator support. PRIMARY RESEARCH QUESTION In people with IBD who report symptoms of fatigue, pain or urgency and express a desire for intervention, does a facilitator-supported tailored (to patient needs) online self-management programme for fatigue, pain and faecal urgency/incontinence improve IBD-related quality of life (measured using the UK-IBDQ) and global rating of symptom relief (0-10 scale) compared with care as usual? METHODS A pragmatic two-arm, parallel group randomised controlled trial (RCT), of a 12-session facilitator-supported online cognitive behavioural self-management programme versus care as usual to manage symptoms of fatigue, pain and faecal urgency/incontinence in IBD. Patients will be recruited through a previous large-scale survey of unselected people with inflammatory bowel disease. The UK Inflammatory Bowel Disease Questionnaire and global rating of symptom relief at 6 months are the co-primary outcomes, with multiple secondary outcomes measured also at 6 and 12 months post randomisation to assess maintenance. The RCT has an embedded pilot study, health economics evaluation and process evaluation. We will randomise 680 patients, 340 in each group. Demographic characteristics and outcome measures will be presented for both study groups at baseline. The UK-IBDQ and global rating of symptom relief at 6 and 12 months post randomisation will be compared between the study groups. DISCUSSION The BOOST online self-management programme for people with IBD-related symptoms of fatigue, pain and urgency has been designed to be easily scalable and implemented. If it is shown to improve patients' quality of life, this trial will enable clinicians and patients to make informed management decisions. This is the first trial, to our knowledge, focused on multiple symptoms prioritised by both people with IBD and health professionals. TRIAL REGISTRATION ISRCTN71618461 . Registered on 9 September 2019.
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Affiliation(s)
| | - Jonathan Syred
- King’s College London, 57 Waterloo Road, London, SE1 8WA UK
| | - Sally Kerry
- Pragmatic Clinical Trials Unit, Queen Mary University of London, 58 Turner St, Whitechapel, London, E1 2AB UK
| | - Micol Artom
- NHS Digital, Skipton House, 80 London Road, London, SE1 6LH UK
| | - Louise Sweeney
- Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK
| | - Ailsa Hart
- IBD Unit, St Mark’s Hospital, Watford Road, Harrow, HA13UJ UK
| | | | - Stephanie J. C. Taylor
- Institute of Population Health Sciences, Queen Mary University of London, 58 Turner St, Whitechapel, London, E1 2AB UK
| | - Borislava Mihaylova
- Institute of Population Health Sciences, Queen Mary University of London, 58 Turner St, Whitechapel, London, E1 2AB UK
- Nuffield Department of Population Health, University of Oxford, Old Road Campus, Oxford, OX3 7LF UK
| | - Chris Roukas
- Institute of Population Health Sciences, Queen Mary University of London, 58 Turner St, Whitechapel, London, E1 2AB UK
| | - Qasim Aziz
- Centre for Neuroscience, Surgery and Trauma, Blizard Institute, Wingate Institute of Neurogastroenterology, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, 26 Ashfield Street, London, E1 2AJ UK
| | - Laura Miller
- Pragmatic Clinical Trials Unit, Queen Mary University of London, 58 Turner St, Whitechapel, London, E1 2AB UK
| | - Richard Pollok
- Department of Gastroenterology, St George’s University Hospitals NHS Foundation Trust and St George’s University of London, London, SW17 0QT UK
| | - Sonia Saxena
- Department of Primary Care and Public Health Imperial College London, London, UK
| | - Imogen Stagg
- London North West University Hospitals, Watford Road, Harrow, HA1 3UJ UK
| | - Helen Terry
- Crohn’s & Colitis UK, 1 Bishops Square (Helios Court), Hatfield Business Park, Hatfield, Hertfordshire, AL10 9NE UK
| | - Zohra Zenasni
- Pragmatic Clinical Trials Unit, Queen Mary University of London, 58 Turner St, Whitechapel, London, E1 2AB UK
| | - Lesley Dibley
- School of Health Sciences, Faculty of Education, Health and Human Sciences, University of Greenwich, (Avery Hill Campus), London, SE9 2UG UK
| | - Rona Moss-Morris
- Psychology Department, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK
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21
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Shih S, Cushman G, Reed B. Temperament and Health-Related Quality of Life in Newly Diagnosed Pediatric Inflammatory Bowel Disease. J Pediatr Psychol 2021; 46:404-412. [PMID: 33270892 DOI: 10.1093/jpepsy/jsaa116] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/11/2020] [Revised: 11/05/2020] [Accepted: 11/05/2020] [Indexed: 11/12/2022] Open
Abstract
OBJECTIVE Health-related quality of life (HRQOL) is typically examined from a deficit standpoint, meaning that little is known about factors associated with higher HRQOL in pediatric illness samples. The aim of the current study was to investigate demographic, disease, and temperamental factors associated with child and parent-report of HRQOL in youth newly diagnosed with inflammatory bowel disease (IBD). METHODS Participants included 52 youth ages 8-17 diagnosed with IBD and their caregivers who each completed ratings of the child's HRQOL. Parents rated their child's emotional reactivity, conceptualized as a temperamental risk factor, and adaptability, conceptualized as a temperamental protective factor. Disease symptoms were rated by youth, and physician global assessment of disease activity was obtained. RESULTS HRQOL was rated lower by children and their parents as self-reported disease symptoms and parent-rated emotional reactivity increased. Conversely, total HRQOL was higher for children with higher parent-ratings of adaptability. In multiple regression analyses, higher levels of adaptability along with male sex and lower child-reported disease symptoms were associated with higher child and parent-reported HRQOL. CONCLUSIONS Higher HRQOL at time of diagnosis in pediatric IBD is associated with greater adaptability when accounting for variability due to child sex and disease symptoms. Consideration of temperament, including emotional reactivity and adaptability, may offer insight into patients' typical ways of responding when stressed and provide preliminary information about factors related to post-diagnosis HRQOL. Attention should be given to both protective and risk factors to inform future intervention development, including strengths-based approaches.
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22
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Yin R, Neyens DM. Online Health Resource Use by Individuals With Inflammatory Bowel Disease: Analysis Using the National Health Interview Survey. J Med Internet Res 2020; 22:e15352. [PMID: 32969831 PMCID: PMC7545328 DOI: 10.2196/15352] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/03/2019] [Revised: 01/28/2020] [Accepted: 07/26/2020] [Indexed: 02/07/2023] Open
Abstract
Background The internet has enabled convenient and efficient health information searching which is valuable for individuals with chronic conditions requiring some level of self-management. However, there is little research evaluating what factors may impact the use of the internet for health-related tasks for specific clinical populations, such as individuals with inflammatory bowel diseases. Objective Our goal was to investigate the factors that influence internet use in acquiring health information by individuals with inflammatory bowel diseases. Specifically, we identified factors associated with internet searching behavior and using the internet for completing health-related tasks. Methods We used 2016 National Health Interview Survey weighted data to develop logistic regression models to predict the likelihood that individuals with inflammatory bowel diseases would use the internet for 2 types of tasks: seeking health information through online searches and using the internet to perform health-related tasks including scheduling appointments and emailing care providers. Results 2016 National Health Interview Survey weighted data include more than 3 million weighted adult respondents with inflammatory bowel diseases (approximately 1.29% of adults in the weighted data set). Our results suggest that approximately 66.3% of those with inflammatory bowel diseases reported using the internet at least once a day, and approximately 14.7% reported being dissatisfied with their current health care. About 62.3% of those with inflammatory bowel diseases reported that they had looked up health information online, 16.3% of those with inflammatory bowel diseases reported that they had scheduled an appointment with a health care provider online, and 21.6% reported having used a computer to communicate with a health provider by email. We found that women who were self-regulating their care were more likely to look up health information online than others. Both middle-aged and older adults with inflammatory bowel diseases who were unsatisfied with their current health care were less likely to look up health information online. Frequent internet users who were worried about medical costs were more likely to look up health information online. Similarly, the results from our statistical models suggest that individuals with inflammatory bowel diseases who were frequent internet users were more likely to use the internet for specific health-related tasks. Additionally, women with inflammatory bowel diseases who reported being married were less likely to use the internet for specific health-related tasks. Conclusions For those with inflammatory bowel diseases, there are additional socioeconomic and behavioral factors that impact the use of the internet for health information and health-related tasks. Future research should evaluate how these factors moderate the use of the internet and identify how online resources can support clinical populations in ways that improve access to information, support health self-management, and subsequently improve health outcomes.
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Affiliation(s)
- Rong Yin
- Department of Industrial Engineering, Clemson University, Clemson, SC, United States
| | - David M Neyens
- Department of Industrial Engineering, Clemson University, Clemson, SC, United States
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Solitano V, D’Amico F, Fiorino G, Paridaens K, Peyrin-Biroulet L, Danese S. Key Strategies to Optimize Outcomes in Mild-to-Moderate Ulcerative Colitis. J Clin Med 2020; 9:jcm9092905. [PMID: 32911840 PMCID: PMC7564568 DOI: 10.3390/jcm9092905] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/17/2020] [Revised: 09/04/2020] [Accepted: 09/07/2020] [Indexed: 12/11/2022] Open
Abstract
Mesalamine (5-ASA) is the mainstay therapy in patients with mild-to-moderate active ulcerative colitis (UC). However, non-adherence to therapy and practice variability among gastroenterologists represent long-standing barriers, leading to poor outcomes. Additionally, targets to treat in UC are increasingly evolving from focusing on clinical remission to achieving endoscopic and histological healing. To date, systemic steroids are still recommended in non-responders to 5-ASA, despite their well-known side effects. Importantly, with the advent of new therapeutic options such as oral corticosteroids with topical activity (e.g., budesonide multimatrix system (MMX)), biologics, and small molecules, some issues need to be addressed for the optimal management of these patients in daily clinical practice. The specific positioning of these drugs in patients with mild-to-moderate disease remains unclear. This review aims to identify current challenges in clinical practice and to provide physicians with key strategies to optimize treatment of patients with mild-to-moderate UC, and ultimately achieve more ambitious therapeutic goals.
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Affiliation(s)
- Virginia Solitano
- Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, 20090 Milan, Italy; (V.S.); (F.D.); (G.F.)
| | - Ferdinando D’Amico
- Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, 20090 Milan, Italy; (V.S.); (F.D.); (G.F.)
- Department of Gastroenterology and Inserm NGERE U1256, University Hospital of Nancy, University of Lorraine, 54500 Vandoeuvre-lès-Nancy, France;
| | - Gionata Fiorino
- Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, 20090 Milan, Italy; (V.S.); (F.D.); (G.F.)
- Department of Gastroenterology, IBD Center, Humanitas Clinical and Research Center, IRCCS, Rozzano, 20089 Milan, Italy
| | | | - Laurent Peyrin-Biroulet
- Department of Gastroenterology and Inserm NGERE U1256, University Hospital of Nancy, University of Lorraine, 54500 Vandoeuvre-lès-Nancy, France;
| | - Silvio Danese
- Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, 20090 Milan, Italy; (V.S.); (F.D.); (G.F.)
- Department of Gastroenterology, IBD Center, Humanitas Clinical and Research Center, IRCCS, Rozzano, 20089 Milan, Italy
- Correspondence: ; Tel.: +39-028-224-4771; Fax: +39-028-224-2591
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Vernon-Roberts A, Gearry RB, Day AS. Assessment of Knowledge Levels Following an Education Program for Parents of Children With Inflammatory Bowel Disease. Front Pediatr 2020; 8:475. [PMID: 32903635 PMCID: PMC7438864 DOI: 10.3389/fped.2020.00475] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/17/2020] [Accepted: 07/07/2020] [Indexed: 01/22/2023] Open
Abstract
Children with inflammatory bowel disease (IBD) and their parents have increasing roles in disease management and require sufficient, appropriate information for communication with their clinical team. Formal education is effective at improving disease knowledge, disease outcomes, and mental health, yet few interventions have been targeted for parents of children with IBD. A two day parent education program was held at the annual residential camp for children with IBD in New Zealand with knowledge levels tested pre and post intervention using a validated assessment tool: IBD-KID2. Thirty parents consented, 25 completed the study, 70% were female and 83% had a child with Crohn's disease. The pre-intervention mean score (maximum fifteen) was 10.6 (SD 2.9), with no associations with independent variables. Knowledge levels increased significantly following the education program to a mean 12.6 (SD 2.0) (p < 0.005). Disease specific knowledge may improve outcomes and should, therefore, be reinforced during clinic encounters, and regarded as an ongoing endeavor.
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Affiliation(s)
| | - Richard B. Gearry
- Department of Medicine, University of Otago, Christchurch, New Zealand
| | - Andrew S. Day
- Department of Paediatrics, University of Otago, Christchurch, New Zealand
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25
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Yang X, Geng J, Meng H. Glucocorticoid receptor modulates dendritic cell function in ulcerative colitis. Histol Histopathol 2020; 35:1379-1389. [PMID: 32706033 DOI: 10.14670/hh-18-241] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/03/2023]
Abstract
Ulcerative colitis (UC) is a serious form of inflammatory bowel disease (IBD) occurring worldwide. Although anti-TNF therapy is found to be effective in over 70% of patients with UC, nearly one-third are still deprived of effective treatment. Because glucocorticoids (GC) can effectively inhibit granulocyte-recruitment into the mucosa, cytokine secretion and T cell activation, they are used widely in the treatment of UC. However, remission is observed in only 55% of the patients after one year of steroid use due to a condition known as steroid response. Additionally, it has been noted that 20%-40% of the patients with UC do not respond to GC treatment. Researchers have revealed that the number of dendritic cells (DCs) in patients with UC tends to increase in the colonic mucosa. Many studies have determined that the removal of peripheral DCs through the adsorption and separation of granulocytes and monocytes could improve tolerance of the intestine to its symbiotic flora. Based on these results, further insights regarding the beneficial effects of Adacolumn apheresis in patients subjected to this treatment could be revealed. GC can effectively inhibit the activation of DCs by reducing the levels of major histocompatibility complex class II (MHC II) molecules, which is critical for controlling the recruitment of granulocytes. Therefore, alternative biological and new individualized therapies based on these approaches need to be evaluated to counter UC. In this review, progress in research associated with the regulatory effect of glucocorticoid receptors on DCs under conditions of UC is discussed, thus providing insights and identifying potential targets which could be employed in the treatment strategies against UC.
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Affiliation(s)
- Xinxin Yang
- Department of Pathology, Harbin Medical University Cancer Hospital, Harbin, China
| | - Jingshu Geng
- Department of Pathology, Harbin Medical University Cancer Hospital, Harbin, China
| | - Hongxue Meng
- Department of Pathology, Harbin Medical University Cancer Hospital, Harbin, China.,Department of Pathology, Harbin Medical University, Harbin, China.
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26
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McCombie A, Walmsley R, Barclay M, Ho C, Langlotz T, Regenbrecht H, Gray A, Visesio N, Inns S, Schultz M. A Noninferiority Randomized Clinical Trial of the Use of the Smartphone-Based Health Applications IBDsmart and IBDoc in the Care of Inflammatory Bowel Disease Patients. Inflamm Bowel Dis 2020; 26:1098-1109. [PMID: 31644793 DOI: 10.1093/ibd/izz252] [Citation(s) in RCA: 31] [Impact Index Per Article: 6.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/14/2019] [Indexed: 12/12/2022]
Abstract
BACKGROUND Providing timely follow-up care for patients with inflammatory bowel disease in remission is important but often difficult because of resource limitations. Using smartphones to communicate symptoms and biomarkers is a potential alternative. We aimed to compare outpatient management using 2 smartphone apps (IBDsmart for symptoms and IBDoc for fecal calprotectin monitoring) vs standard face-to-face care. We hypothesized noninferiority of quality of life and symptoms at 12 months plus a reduction in face-to-face appointments in the smartphone app group. METHODS Inflammatory bowel disease outpatients (previously seen more often than annually) were randomized to smartphone app or standard face-to-face care over 12 months. Quality of life and symptoms were measured quarterly for 12 months. Acceptability was measured for gastroenterologists and patients at 12 months. RESULTS One hundred people (73 Crohn's disease, 49 male, average age 35 years) consented and completed baseline questionnaires (50 in each group). Intention-to-treat and per-protocol analyses revealed noninferiority of quality of life and symptom scores at 12 months. Outpatient appointment numbers were reduced in smartphone app care (P < 0.001). There was no difference in number of surgical outpatient appointments or number of disease-related hospitalizations between groups. Adherence to IBDsmart (50% perfect adherence) was slightly better than adherence to IBDoc (30% perfect adherence). Good acceptability was reported among most gastroenterologists and patients. CONCLUSIONS Remote symptom and fecal calprotectin monitoring is effective and acceptable. It also reduces the need for face-to-face outpatient appointments. Patients with mild-to-moderate disease who are not new diagnoses are ideal for this system. CLINICAL TRIAL REGISTRATION NUMBER ACTRN12615000342516.
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Affiliation(s)
| | - Russell Walmsley
- University of Auckland and Department of Gastroenterology, Waitemata District Health Board, Auckland, New Zealand
| | - Murray Barclay
- University of Otago and Department of Gastroenterology, Canterbury District Health Board, Christchurch, New Zealand
| | - Christine Ho
- Department of Gastroenterology, Southern District Health Board, Dunedin, New Zealand
| | - Tobias Langlotz
- Department of Information Science, University of Otago, Dunedin, New Zealand
| | - Holger Regenbrecht
- Department of Gastroenterology, Southern District Health Board, Dunedin, New Zealand
| | - Andrew Gray
- Centre for Biostatistics, University of Otago, Dunedin, New Zealand
| | - Nideen Visesio
- Department of Gastroenterology, Waitemata District Health Board, Auckland, New Zealand
| | - Stephen Inns
- Department of Medicine, University of Otago, Wellington, New Zealand and Department of Gastroenterology, Hutt Valley District Health Board, Lower Hutt, New Zealand
| | - Michael Schultz
- Department of Medicine, University of Otago, and Department of Gastroenterology, Southern District Health Board, Dunedin, New Zealand
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Le Berre C, Bourreille A, Flamant M, Bouguen G, Siproudhis L, Dewitte M, Dib N, Cesbron-Metivier E, Goronflot T, Hanf M, Gourraud PA, Kerdreux E, Poinas A, Trang-Poisson C. Protocol of a multicentric prospective cohort study for the VALIDation of the IBD-disk instrument for assessing disability in inflammatory bowel diseases: the VALIDate study. BMC Gastroenterol 2020; 20:110. [PMID: 32299390 PMCID: PMC7164208 DOI: 10.1186/s12876-020-01246-7] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/06/2018] [Accepted: 03/27/2020] [Indexed: 12/22/2022] Open
Abstract
Background Inflammatory Bowel Diseases (IBD) affect psychological, family, social and professional dimensions of patients’ life, leading to disability which is essential to quantify as part of Patient-Reported Outcomes (PROs) newly included in the targets to reach in IBD patients. Up to now, the IBD-Disability Index (IBD-DI) was the only validated tool to assess disability, but it is not appropriate for use in clinical practice. The IBD Disk was developed, a shortened and self-administered tool, adapted from the IBD-DI, in order to give immediate representation of patient-reported disability. However, the IBD Disk has not been validated yet in clinical practice. The aims of the VALIDate study are to validate this tool in a large population of IBD patients and to compare it to the already validated IBD-DI. Methods The VALIDate study is an ongoing multicentric prospective cohort study launched in April 2018 in 3 French University Hospitals (Nantes, Rennes, Angers), with an objective to reach a sample of 400 patients over a period inclusion of 6 months. Each patient will fill in the two questionnaires IBD Disk and IBD-DI at baseline, then between 3 and 12 months later, during a follow-up visit. Clinical and socio-demographic data will also be collected. During these two consultations, gastroenterologists and patients will evaluate disease activity thanks to a semi-quantitative 4-grade scale, named respectively PGA (Physician Global Assessment) and PtGA (Patient Global Assessment). This cohort will allow to evaluate the validity of the IBD Disk with respect to the IBD-DI in order to generalize its use for clinical practice. Other psychometric criteria of the IBD Disk will also be analysed as its reliability or its discriminant capacity. Close attention will nonetheless be needed to minimize the number of lost to follow-up patients between baseline and follow-up. Discussion The VALIDate study is the study designed to validate the IBD Disk, a visual tool easily useable in daily practice to assess disability in IBD patients. The results of this trial should enable the diffusion of this tool. Trial registration The trial is registered in ClinicalTrials.Gov with registration number NCT03590639. First posted: July 18, 2018.
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Affiliation(s)
- C Le Berre
- Institut des Maladies de l'Appareil Digestif, Nantes University Hospital, Nantes, France.
| | - A Bourreille
- Institut des Maladies de l'Appareil Digestif, Nantes University Hospital, Nantes, France
| | - M Flamant
- Institut des Maladies de l'Appareil Digestif, Nantes University Hospital, Nantes, France
| | - G Bouguen
- Service des Maladies de l'Appareil Digestif, Rennes University Hospital, Rennes, France
| | - L Siproudhis
- Service des Maladies de l'Appareil Digestif, Rennes University Hospital, Rennes, France
| | - M Dewitte
- Service des Maladies de l'Appareil Digestif, Rennes University Hospital, Rennes, France
| | - N Dib
- Service de Gastroentérologie, Angers University Hospital, Angers, France
| | - E Cesbron-Metivier
- Service de Gastroentérologie, Angers University Hospital, Angers, France
| | - T Goronflot
- Clinique des Données, Nantes University Hospital, Nantes, France
| | - M Hanf
- Clinique des Données, Nantes University Hospital, Nantes, France
| | - P-A Gourraud
- Clinique des Données, Nantes University Hospital, Nantes, France
| | - E Kerdreux
- Centre d'Investigation Clinique, Nantes University Hospital, Nantes, France
| | - A Poinas
- Direction de la Recherche Clinique, Nantes University Hospital, Nantes, France
| | - C Trang-Poisson
- Institut des Maladies de l'Appareil Digestif, Nantes University Hospital, Nantes, France
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Whear R, Thompson‐Coon J, Rogers M, Abbott RA, Anderson L, Ukoumunne O, Matthews J, Goodwin VA, Briscoe S, Perry M, Stein K, Cochrane Effective Practice and Organisation of Care Group. Patient-initiated appointment systems for adults with chronic conditions in secondary care. Cochrane Database Syst Rev 2020; 4:CD010763. [PMID: 32271946 PMCID: PMC7144896 DOI: 10.1002/14651858.cd010763.pub2] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
BACKGROUND Missed hospital outpatient appointments is a commonly reported problem in healthcare services around the world; for example, they cost the National Health Service (NHS) in the UK millions of pounds every year and can cause operation and scheduling difficulties worldwide. In 2002, the World Health Organization (WHO) published a report highlighting the need for a model of care that more readily meets the needs of people with chronic conditions. Patient-initiated appointment systems may be able to meet this need at the same time as improving the efficiency of hospital appointments. OBJECTIVES To assess the effects of patient-initiated appointment systems compared with consultant-led appointment systems for people with chronic or recurrent conditions managed in secondary care. SEARCH METHODS We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, and six other databases. We contacted authors of identified studies and conducted backwards and forwards citation searching. We searched for current/ongoing research in two trial registers. Searches were run on 13 March 2019. SELECTION CRITERIA We included randomised trials, published and unpublished in any language that compared the use of patient-initiated appointment systems to consultant-led appointment systems for adults with chronic or recurrent conditions managed in secondary care if they reported one or more of the following outcomes: physical measures of health status or disease activity (including harms), quality of life, service utilisation or cost, adverse effects, patient or clinician satisfaction, or failures of the 'system'. DATA COLLECTION AND ANALYSIS Two review authors independently screened all references at title/abstract stage and full-text stage using prespecified inclusion criteria. We resolved disagreements though discussion. Two review authors independently completed data extraction for all included studies. We discussed and resolved discrepancies with a third review author. Where needed, we contacted authors of included papers to provide more information. Two review authors independently assessed the risk of bias using the Cochrane Effective Practice and Organisation of Care 'Risk of bias' tool, resolving any discrepancies with a third review author. Two review authors independently assessed the certainty of the evidence using GRADE. MAIN RESULTS The 17 included randomised trials (3854 participants; mean age 41 to 76 years; follow-up 12 to 72 months) covered six broad health conditions: cancer, rheumatoid arthritis, asthma, chronic obstructive pulmonary disease, psoriasis and inflammatory bowel disease. The certainty of the evidence using GRADE ratings was mainly low to very low. The results suggest that patient-initiated clinics may make little or no difference to anxiety (odds ratio (OR) 0.87, 95% confidence interval (CI) 0.68 to 1.12; 5 studies, 1019 participants; low-certainty evidence) or depression (OR 0.79 95% CI 0.51 to 1.23; 6 studies, 1835 participants; low-certainty evidence) compared to the consultant-led appointment system. The results also suggest that patient-initiated clinics may make little or no difference to quality of life (standardised mean difference (SMD) 0.12, 95% CI 0.00 to 0.25; 7 studies, 1486 participants; low-certainty evidence) compared to the consultant-led appointment system. Results for service utilisation (contacts) suggest there may be little or no difference in service utilisation in terms of contacts between the patient-initiated and consultant-led appointment groups; however, the effect is not certain as the rate ratio ranged from 0.68 to 3.83 across the studies (median rate ratio 1.11, interquartile (IQR) 0.93 to 1.37; 15 studies, 3348 participants; low-certainty evidence). It is uncertain if service utilisation (costs) are reduced in the patient-initiated compared to the consultant-led appointment groups (8 studies, 2235 participants; very low-certainty evidence). The results suggest that adverse events such as relapses in some conditions (inflammatory bowel disease and cancer) may have little or no reduction in the patient-initiated appointment group in comparison with the consultant-led appointment group (MD -0.20, 95% CI -0.54 to 0.14; 3 studies, 888 participants; low-certainty evidence). The results are unclear about any differences the intervention may make to patient satisfaction (SMD 0.05, 95% CI -0.41 to 0.52; 2 studies, 375 participants) because the certainty of the evidence is low, as each study used different questions to collect their data at different time points and across different health conditions. Some areas of risk of bias across all the included studies was consistently high (i.e. for blinding of participants and personnel and blinding of outcome assessment, other areas were largely of low risk of bias or were affected by poor reporting making the assessment unclear). AUTHORS' CONCLUSIONS Patient-initiated appointment systems may have little or no effect on patient anxiety, depression and quality of life compared to consultant-led appointment systems. Other aspects of disease status and experience also appear to show little or no difference between patient-initiated and consultant-led appointment systems. Patient-initiated appointment systems may have little or no effect on service utilisation in terms of service contact and there is uncertainty about costs compared to consultant-led appointment systems. Patient-initiated appointment systems may have little or no effect on adverse events such as relapse or patient satisfaction compared to consultant-led appointment systems.
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Affiliation(s)
- Rebecca Whear
- University of Exeter Medical SchoolNIHR CLAHRC South West Peninsula (PenCLAHRC)St Luke's CampusUniversity of ExeterExeterDevonUKEX1 2LU
| | - Joanna Thompson‐Coon
- University of Exeter Medical SchoolNIHR CLAHRC South West Peninsula (PenCLAHRC)St Luke's CampusUniversity of ExeterExeterDevonUKEX1 2LU
| | - Morwenna Rogers
- University of Exeter Medical SchoolNIHR PenCLAHRC, Institute of Health ResearchExeterDevonUKEX1 2LU
| | - Rebecca A Abbott
- University of Exeter Medical SchoolNIHR CLAHRC South West Peninsula (PenCLAHRC)St Luke's CampusUniversity of ExeterExeterDevonUKEX1 2LU
| | - Lindsey Anderson
- University of Exeter Medical SchoolInstitute of Health ResearchVeysey Building, Salmon Pool LaneExeterUKEX2 4SG
| | - Obioha Ukoumunne
- University of Exeter Medical SchoolNIHR CLAHRC South West Peninsula (PenCLAHRC)St Luke's CampusUniversity of ExeterExeterDevonUKEX1 2LU
| | - Justin Matthews
- University of Exeter Medical SchoolNIHR PenCLAHRC, Institute of Health ResearchExeterDevonUKEX1 2LU
| | - Victoria A Goodwin
- University of Exeter Medical SchoolNIHR CLAHRC South West Peninsula (PenCLAHRC)St Luke's CampusUniversity of ExeterExeterDevonUKEX1 2LU
| | - Simon Briscoe
- University of Exeter Medical SchoolNIHR CLAHRC South West Peninsula (PenCLAHRC)St Luke's CampusUniversity of ExeterExeterDevonUKEX1 2LU
| | - Mark Perry
- Derriford HospitalRheumatologyPlymouthDevonUKPL6 8DH
| | - Ken Stein
- University of Exeter Medical School, University of ExeterPeninsula Technology Assessment Group (PenTAG)Salmon Pool LaneExeterUKEX2 4SG
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Negoescu DM, Enns EA, Swanhorst B, Baumgartner B, Campbell JP, Osterman MT, Papamichael K, Cheifetz AS, Vaughn BP. Proactive Vs Reactive Therapeutic Drug Monitoring of Infliximab in Crohn's Disease: A Cost-Effectiveness Analysis in a Simulated Cohort. Inflamm Bowel Dis 2020; 26:103-111. [PMID: 31184366 PMCID: PMC6905301 DOI: 10.1093/ibd/izz113] [Citation(s) in RCA: 39] [Impact Index Per Article: 7.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/05/2019] [Indexed: 12/12/2022]
Abstract
BACKGROUND Therapeutic drug monitoring (TDM) is increasingly performed for Infliximab (IFX) in patients with Crohn's disease (CD). Reactive TDM is a cost-effective strategy to empiric IFX dose escalation. The cost-effectiveness of proactive TDM is unknown. The aim of this study is to assess the cost-effectiveness of proactive vs reactive TDM in a simulated population of CD patients on IFX. METHODS We developed a stochastic simulation model of CD patients on IFX and evaluated the expected health costs and outcomes of a proactive TDM strategy compared with a reactive strategy. The proactive strategy measured IFX concentration and antibody status every 6 months, or at the time of a flare, and dosed IFX to a therapeutic window. The reactive strategy only did so at the time of a flare. RESULTS The proactive strategy led to fewer flares than the reactive strategy. More patients stayed on IFX in the proactive vs reactive strategy (63.4% vs 58.8% at year 5). From a health sector perspective, a proactive strategy was marginally cost-effective compared with a reactive strategy (incremental cost-effectiveness ratio of $146,494 per quality-adjusted life year), assuming a 40% of the wholesale price of IFX. The results were most sensitive to risk of flaring with a low IFX concentration and the cost of IFX. CONCLUSIONS Assuming 40% of the average wholesale acquisition cost of biologic therapies, proactive TDM for IFX is marginally cost-effective compared with a reactive TDM strategy. As the cost of infliximab decreases, a proactive monitoring strategy is more cost-effective.
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Affiliation(s)
- Diana M Negoescu
- Department of Industrial and Systems Engineering, University of Minnesota College of Science and Engineering, Minneapolis, MN
| | - Eva A Enns
- Division of Health Policy and Management, University of Minnesota School of Public Health, Minneapolis, MN
| | - Brooke Swanhorst
- Department of Industrial and Systems Engineering, University of Minnesota College of Science and Engineering, Minneapolis, MN
| | - Bonnie Baumgartner
- Department of Industrial and Systems Engineering, University of Minnesota College of Science and Engineering, Minneapolis, MN
| | - James P Campbell
- Division of Gastroenterology, Hepatology and Nutrition, University of Minnesota Medical School, Minneapolis, MN
| | - Mark T Osterman
- Division of Gastroenterology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA
| | - Konstantinos Papamichael
- Center for Inflammatory Bowel Disease, Beth-Israel Deaconess Medical Center, Harvard Medical School, Boston, MA
| | - Adam S Cheifetz
- Center for Inflammatory Bowel Disease, Beth-Israel Deaconess Medical Center, Harvard Medical School, Boston, MA
| | - Byron P Vaughn
- Division of Gastroenterology, Hepatology and Nutrition, University of Minnesota Medical School, Minneapolis, MN
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30
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Lamb CA, Kennedy NA, Raine T, Hendy PA, Smith PJ, Limdi JK, Hayee B, Lomer MCE, Parkes GC, Selinger C, Barrett KJ, Davies RJ, Bennett C, Gittens S, Dunlop MG, Faiz O, Fraser A, Garrick V, Johnston PD, Parkes M, Sanderson J, Terry H, Gaya DR, Iqbal TH, Taylor SA, Smith M, Brookes M, Hansen R, Hawthorne AB. British Society of Gastroenterology consensus guidelines on the management of inflammatory bowel disease in adults. Gut 2019; 68:s1-s106. [PMID: 31562236 PMCID: PMC6872448 DOI: 10.1136/gutjnl-2019-318484] [Citation(s) in RCA: 1509] [Impact Index Per Article: 251.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/10/2019] [Revised: 06/10/2019] [Accepted: 06/10/2019] [Indexed: 02/06/2023]
Abstract
Ulcerative colitis and Crohn's disease are the principal forms of inflammatory bowel disease. Both represent chronic inflammation of the gastrointestinal tract, which displays heterogeneity in inflammatory and symptomatic burden between patients and within individuals over time. Optimal management relies on understanding and tailoring evidence-based interventions by clinicians in partnership with patients. This guideline for management of inflammatory bowel disease in adults over 16 years of age was developed by Stakeholders representing UK physicians (British Society of Gastroenterology), surgeons (Association of Coloproctology of Great Britain and Ireland), specialist nurses (Royal College of Nursing), paediatricians (British Society of Paediatric Gastroenterology, Hepatology and Nutrition), dietitians (British Dietetic Association), radiologists (British Society of Gastrointestinal and Abdominal Radiology), general practitioners (Primary Care Society for Gastroenterology) and patients (Crohn's and Colitis UK). A systematic review of 88 247 publications and a Delphi consensus process involving 81 multidisciplinary clinicians and patients was undertaken to develop 168 evidence- and expert opinion-based recommendations for pharmacological, non-pharmacological and surgical interventions, as well as optimal service delivery in the management of both ulcerative colitis and Crohn's disease. Comprehensive up-to-date guidance is provided regarding indications for, initiation and monitoring of immunosuppressive therapies, nutrition interventions, pre-, peri- and postoperative management, as well as structure and function of the multidisciplinary team and integration between primary and secondary care. Twenty research priorities to inform future clinical management are presented, alongside objective measurement of priority importance, determined by 2379 electronic survey responses from individuals living with ulcerative colitis and Crohn's disease, including patients, their families and friends.
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Affiliation(s)
- Christopher Andrew Lamb
- Newcastle University, Newcastle upon Tyne, UK
- Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK
| | - Nicholas A Kennedy
- Royal Devon and Exeter NHS Foundation Trust, Exeter, UK
- University of Exeter, Exeter, UK
| | - Tim Raine
- Cambridge University Hospitals NHS FoundationTrust, Cambridge, UK
| | - Philip Anthony Hendy
- Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
- Imperial College London, London, UK
| | - Philip J Smith
- Royal Liverpool and Broadgreen University Hospitals NHS Trust, Liverpool, UK
| | - Jimmy K Limdi
- The Pennine Acute Hospitals NHS Trust, Manchester, UK
- University of Manchester, Manchester, UK
| | - Bu'Hussain Hayee
- King's College Hospital NHS Foundation Trust, London, UK
- King's College London, London, UK
| | - Miranda C E Lomer
- King's College London, London, UK
- Guy's and St Thomas' NHS Foundation Trust, London, UK
| | - Gareth C Parkes
- Barts Health NHS Trust, London, UK
- Barts and the London School of Medicine and Dentistry, London, UK
| | - Christian Selinger
- Leeds Teaching Hospitals NHS Trust, Leeds, UK
- University of Leeds, Leeds, UK
| | | | - R Justin Davies
- Cambridge University Hospitals NHS FoundationTrust, Cambridge, UK
- University of Cambridge, Cambridge, UK
| | - Cathy Bennett
- Systematic Research Ltd, Quorn, UK
- Royal College of Surgeons in Ireland (RCSI), Dublin, Ireland
| | | | - Malcolm G Dunlop
- University of Edinburgh, Edinburgh, UK
- Western General Hospital, Edinburgh, UK
| | - Omar Faiz
- Imperial College London, London, UK
- St Mark's Hospital, Harrow, UK
| | - Aileen Fraser
- University Hospitals Bristol NHS Foundation Trust, Bristol, UK
| | | | | | - Miles Parkes
- Cambridge University Hospitals NHS FoundationTrust, Cambridge, UK
| | - Jeremy Sanderson
- King's College London, London, UK
- Guy's and St Thomas' NHS Foundation Trust, London, UK
| | | | - Daniel R Gaya
- Glasgow Royal Infirmary, Glasgow, UK
- University of Glasgow, Glasgow, UK
| | - Tariq H Iqbal
- Queen Elizabeth Hospital Birmingham NHSFoundation Trust, Birmingham, UK
- University of Birmingham, Birmingham, UK
| | - Stuart A Taylor
- University College London, London, UK
- University College London Hospitals NHS Foundation Trust, London, UK
| | - Melissa Smith
- Brighton and Sussex University Hospitals NHS Trust, Brighton, UK
- Brighton and Sussex Medical School, Brighton, UK
| | - Matthew Brookes
- Royal Wolverhampton NHS Trust, Wolverhampton, UK
- University of Wolverhampton, Wolverhampton, UK
| | - Richard Hansen
- Royal Hospital for Children Glasgow, Glasgow, UK
- University of Glasgow, Glasgow, UK
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Abstract
Ulcerative colitis and Crohn's disease are the principal forms of inflammatory bowel disease. Both represent chronic inflammation of the gastrointestinal tract, which displays heterogeneity in inflammatory and symptomatic burden between patients and within individuals over time. Optimal management relies on understanding and tailoring evidence-based interventions by clinicians in partnership with patients. This guideline for management of inflammatory bowel disease in adults over 16 years of age was developed by Stakeholders representing UK physicians (British Society of Gastroenterology), surgeons (Association of Coloproctology of Great Britain and Ireland), specialist nurses (Royal College of Nursing), paediatricians (British Society of Paediatric Gastroenterology, Hepatology and Nutrition), dietitians (British Dietetic Association), radiologists (British Society of Gastrointestinal and Abdominal Radiology), general practitioners (Primary Care Society for Gastroenterology) and patients (Crohn's and Colitis UK). A systematic review of 88 247 publications and a Delphi consensus process involving 81 multidisciplinary clinicians and patients was undertaken to develop 168 evidence- and expert opinion-based recommendations for pharmacological, non-pharmacological and surgical interventions, as well as optimal service delivery in the management of both ulcerative colitis and Crohn's disease. Comprehensive up-to-date guidance is provided regarding indications for, initiation and monitoring of immunosuppressive therapies, nutrition interventions, pre-, peri- and postoperative management, as well as structure and function of the multidisciplinary team and integration between primary and secondary care. Twenty research priorities to inform future clinical management are presented, alongside objective measurement of priority importance, determined by 2379 electronic survey responses from individuals living with ulcerative colitis and Crohn's disease, including patients, their families and friends.
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32
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Schütz L, Radke M, Menzel S, Däbritz J. Long-term implications of structured transition of adolescents with inflammatory bowel disease into adult health care: a retrospective study. BMC Gastroenterol 2019; 19:128. [PMID: 31324228 PMCID: PMC6642593 DOI: 10.1186/s12876-019-1046-5] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/10/2019] [Accepted: 07/15/2019] [Indexed: 12/16/2022] Open
Abstract
Background We aimed to evaluate the long-term clinical and socioeconomic outcome of structured transition care in adolescents with inflammatory bowel disease (IBD). Methods We compared the clinical long-term course of 24 patients with and 11 patients without structured transition care within 24 months before and 24 months after transfer from paediatric to adult health care. Socio-economic parameters and quality of life were assessed by IBD Questionnaire (IBDQ-32) and additional items. Treatment costs were calculated for medication, surgery and hospitalisation. Results The percentage of transfer group patients with an IBD-related intestinal complication was higher compared to the transition group (64% vs. 21%, p = 0.022). We also found a tendency towards a higher number of IBD-related surgery in the transfer group compared to the transition group (46% vs. 13%, p = 0.077). Transfer group patients received higher mean cumulated doses of radiation compared with the transition group (4.2 ± 5.3 mSv vs. 0.01 ± 0.01 mSv, p = 0.036). Delayed puberty was only noted in the transfer group (27%, p = 0.025). Mean expenditures for surgeries and hospitalisation tended to be lower in the transition group compared to transfer group patients (744 ± 630€ vs. 2,691 ± 4,150€, p = 0.050). Sexual life satisfaction was significantly higher (p = 0.023) and rates of loose bowel movements tended to be lower (p = 0.053) in the transition group. Conclusions Structured transition of adolescents with IBD from paediatric into adult health care can lead to important clinical and economic benefits. Electronic supplementary material The online version of this article (10.1186/s12876-019-1046-5) contains supplementary material, which is available to authorized users.
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Affiliation(s)
- Lukas Schütz
- Department of Paediatrics, University Hospital Rostock, Ernst-Heydemann-Str. 8, D-18057, Rostock, Germany
| | - Michael Radke
- Department of Paediatrics, University Hospital Rostock, Ernst-Heydemann-Str. 8, D-18057, Rostock, Germany.,Department of Paediatrics, Klinikum Westbrandenburg, Potsdam, Germany
| | - Stephan Menzel
- Ernst-von-Bergmann Outpatient Clinic, Gastroenterology & Hepatology, Potsdam, Germany
| | - Jan Däbritz
- Department of Paediatrics, University Hospital Rostock, Ernst-Heydemann-Str. 8, D-18057, Rostock, Germany.
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Nurse-Led Telephone Advice Line for Patients With Inflammatory Bowel Disease: A Cross-Sectional Multicenter Activity Analysis. Gastroenterol Nurs 2019; 42:133-139. [PMID: 30946300 DOI: 10.1097/sga.0000000000000372] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/17/2022] Open
Abstract
Telephone helplines is an effective method for helping patients with chronic diseases, including inflammatory bowel disease (IBD). The objective of this cross-sectional multicenter study was to assess reasons for consultation by patients with IBD to a nurse-led telephone service. The sample included 7,273 IBD patients from 6 public hospitals in Barcelona, Spain. Data collected included calls registered during 50 working days including caller characteristics, reason for consultation, patient's diagnosis, and action recommended. The most common reasons for consultation were suspicion of relapse, doubts regarding medication, drug monitoring, side effects, visit appointment, and request of test results. In 63.7% of cases, telephone calls were solved solely by nurses, and in 35.9% in collaboration with a physician. Patient's questions were resolved via telephone in 89.3%. Findings from this study add support of the nurse's role for providing an effective telephone service for resolution of a wide range of patient queries in IBD. Helplines managed by IBD nurses may be a key element for patient-centered care.
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A Randomized Controlled Trial of TELEmedicine for Patients with Inflammatory Bowel Disease (TELE-IBD). Am J Gastroenterol 2019; 114:472-482. [PMID: 30410041 DOI: 10.1038/s41395-018-0272-8] [Citation(s) in RCA: 108] [Impact Index Per Article: 18.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
INTRODUCTION Telemedicine has shown promise in inflammatory bowel disease (IBD). The objective of this study was to compare disease activity and quality of life (QoL) in a 1-year randomized trial of IBD patients receiving telemedicine vs. standard care. METHODS Patients with worsening symptoms in the prior 2 years were eligible for randomization to telemedicine (monitoring via texts EOW or weekly) or standard care. The primary outcomes were the differences in change in disease activity and QoL between the groups; change in healthcare utilization among groups was a secondary aim. RESULTS 348 participants were enrolled (117 control group, 115 TELE-IBD EOW, and 116 TELE-IBD weekly). 259 (74.4%) completed the study. Age was 38.9 ± 12.3 years, 56.6% were women, 91.9% were Caucasian, 67.9% had Crohn's disease (CD) and 42.5% had active disease at baseline. In CD, all groups experienced a decrease in disease activity (control -5.2 ± 5.0 to 3.7 ± 3.6, TELE-IBD EOW 4.7 ± 4.1 to 4.2 ± 3.9, and TELE-IBD weekly 4.2 ± 4.2 to 3.2 ± 3.4, p < 0.0001 for each of the groups) In UC, only controls had a significant decrease in disease activity (control 2.9 ± 3.1 to 1.4 ± 1.4, p = 0.01, TELE-IBD EOW 2.7 ± 3.1 to 1.7 ± 1.9, p = 0.35, and TELE-IBD Weekly 2.5 ± 2.5 to 2.0 ± 1.8, p = 0.31). QoL increased in all groups; the increase was significant only in TELE-IBD EOW (control 168.1 ± 34.0 to 179.3 ± 28.2, p = 0.06, TELE-IBD EOW 172.3 ± 33.1 to 181.5 ± 28.2, p = 0.03, and TELE-IBD Weekly 172.3 ± 34.5 to 179.2 ± 32.8, p = 0.10). Unadjusted and adjusted changes in disease activity and QoL were not significantly different among groups. Healthcare utilization increased in all groups. TELE-IBD weekly were less likely to have IBD-related hospitalizations and more likely to have non-invasive diagnostic tests and electronic encounters compared to controls; both TELE-IBD groups had decreased non-IBD related hospitalizations and increased telephone calls compared to controls. DISCUSSION Disease activity and QoL, although improved in all participants, were not improved further through use of the TELE-IBD system. TELE-IBD participants experienced a decrease in hospitalizations with an associated increase in non-invasive diagnostic tests, telephone calls and electronic encounters. Research is needed to determine if TELE-IBD can be improved through patient engagement and whether it can decrease healthcare utilization by replacing standard care.
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Hay E, Dziedzic K, Foster N, Peat G, van der Windt D, Bartlam B, Blagojevic-Bucknall M, Edwards J, Healey E, Holden M, Hughes R, Jinks C, Jordan K, Jowett S, Lewis M, Mallen C, Morden A, Nicholls E, Ong BN, Porcheret M, Wulff J, Kigozi J, Oppong R, Paskins Z, Croft P. Optimal primary care management of clinical osteoarthritis and joint pain in older people: a mixed-methods programme of systematic reviews, observational and qualitative studies, and randomised controlled trials. PROGRAMME GRANTS FOR APPLIED RESEARCH 2018. [DOI: 10.3310/pgfar06040] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 02/07/2023]
Abstract
BackgroundOsteoarthritis (OA) is the most common long-term condition managed in UK general practice. However, care is suboptimal despite evidence that primary care and community-based interventions can reduce OA pain and disability.ObjectivesThe overall aim was to improve primary care management of OA and the health of patients with OA. Four parallel linked workstreams aimed to (1) develop a health economic decision model for estimating the potential for cost-effective delivery of primary care OA interventions to improve population health, (2) develop and evaluate new health-care models for delivery of core treatments and support for self-management among primary care consulters with OA, and to investigate prioritisation and implementation of OA care among the public, patients, doctors, health-care professionals and NHS trusts, (3) determine the effectiveness of strategies to optimise specific components of core OA treatment using the example of exercise and (4) investigate the effect of interventions to tackle barriers to core OA treatment, using the example of comorbid anxiety and depression in persons with OA.Data sourcesThe North Staffordshire Osteoarthritis Project database, held by Keele University, was the source of data for secondary analyses in workstream 1.MethodsWorkstream 1 used meta-analysis and synthesis of published evidence about effectiveness of primary care treatments, combined with secondary analysis of existing longitudinal population-based cohort data, to identify predictors of poor long-term outcome (prognostic factors) and design a health economic decision model to estimate cost-effectiveness of different hypothetical strategies for implementing optimal primary care for patients with OA. Workstream 2 used mixed methods to (1) develop and test a ‘model OA consultation’ for primary care health-care professionals (qualitative interviews, consensus, training and evaluation) and (2) evaluate the combined effect of a computerised ‘pop-up’ guideline for general practitioners (GPs) in the consultation and implementing the model OA consultation on practice and patient outcomes (parallel group intervention study). Workstream 3 developed and investigated in a randomised controlled trial (RCT) how to optimise the effect of exercise in persons with knee OA by tailoring it to the individual and improving adherence. Workstream 4 developed and investigated in a cluster RCT the extent to which screening patients for comorbid anxiety and depression can improve OA outcomes. Public and patient involvement included proposal development, project steering and analysis. An OA forum involved public, patient, health professional, social care and researcher representatives to debate the results and formulate proposals for wider implementation and dissemination.ResultsThis programme provides evidence (1) that economic modelling can be used in OA to extrapolate findings of cost-effectiveness beyond the short-term outcomes of clinical trials, (2) about ways of implementing support for self-management and models of optimal primary care informed by National Institute for Health and Care Excellence recommendations, including the beneficial effects of training in a model OA consultation on GP behaviour and of pop-up screens in GP consultations on the quality of prescribing, (3) against adding enhanced interventions to current effective physiotherapy-led exercise for knee OA and (4) against screening for anxiety and depression in patients with musculoskeletal pain as an addition to current best practice for OA.ConclusionsImplementation of evidence-based care for patients with OA is feasible in general practice and has an immediate impact on improving the quality of care delivered to patients. However, improved levels of quality of care, changes to current best practice physiotherapy and successful introduction of psychological screening, as achieved by this programme, did not substantially reduce patients’ pain and disability. This poses important challenges for clinical practice and OA research.LimitationsThe key limitation in this work is the lack of improvement in patient-reported pain and disability despite clear evidence of enhanced delivery of evidence-based care.Future work recommendations(1) New thinking and research is needed into the achievable and desirable long-term goals of care for people with OA, (2) continuing investigation into the resources needed to properly implement clinical guidelines for management of OA as a long-term condition, such as regular monitoring to maintain exercise and physical activity and (3) new research to identify subgroups of patients with OA as a basis for stratified primary care including (i) those with good prognosis who can self-manage with minimal investigation or specialist treatment, (ii) those who will respond to, and benefit from, specific interventions in primary care, such as physiotherapy-led exercise, and (iii) develop research into effective identification and treatment of clinically important anxiety and depression in patients with OA and into the effects of pain management on psychological outcomes in patients with OA.Trial registrationCurrent Controlled Trials ISRCTN06984617, ISRCTN93634563 and ISRCTN40721988.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research Programme and will be published in full inProgramme Grants for Applied Research Programme; Vol. 6, No. 4. See the NIHR Journals Library website for further project information.
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Affiliation(s)
- Elaine Hay
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Krysia Dziedzic
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Nadine Foster
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - George Peat
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Danielle van der Windt
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Bernadette Bartlam
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Milisa Blagojevic-Bucknall
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - John Edwards
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Emma Healey
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Melanie Holden
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Rhian Hughes
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Clare Jinks
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Kelvin Jordan
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Sue Jowett
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
- Health Economics Unit, University of Birmingham, Birmingham, UK
| | - Martyn Lewis
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Christian Mallen
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Andrew Morden
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Elaine Nicholls
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Bie Nio Ong
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Mark Porcheret
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Jerome Wulff
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Jesse Kigozi
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
- Health Economics Unit, University of Birmingham, Birmingham, UK
| | - Raymond Oppong
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
- Health Economics Unit, University of Birmingham, Birmingham, UK
| | - Zoe Paskins
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
| | - Peter Croft
- Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, Keele, UK
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Argüelles-Arias F, Carpio D, Calvet X, Romero C, Cea-Calvo L, Juliá B, López-Sanromán A. Knowledge of disease and access to a specialist reported by Spanish patients with ulcerative colitis. UC-LIFE survey. REVISTA ESPANOLA DE ENFERMEDADES DIGESTIVAS 2018; 109:421-429. [PMID: 28605920 DOI: 10.17235/reed.2017.4748/2016] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
Abstract
BACKGROUND AND AIM Education of patients with ulcerative colitis (UC) about their disease and access to a specialist are important to improve health outcomes. Our objective was to determine, by collecting information directly from the patients, their information sources and knowledge of the disease, and the options for access to the gastroenterologist. METHODS The information was collected using a printed survey handed out by 39 gastroenterologists to 15 consecutive adult patients with UC. Patients answered anonymously from their home. The responses were stratified by hospital size (> 900; 500-900; < 500 beds). RESULTS A total of 585 patients received the survey and 436 responded (74.5%; mean age of 46 years [13.5], 53% men). The main information source was the specialist physician (89.2%). Between 32% and 80% of patients had areas of improvement regarding knowledge of their disease. Knowledge of the disease was better in patients from small hospitals (< 500 beds). The frequency of routine visits was also higher in small hospitals. In case of a flare-up, 60% stated they were able to contact their doctor by phone and 37%, that they could get an appointment on the same day. The percentage stating that they had to ask for an appointment and wait until their physician was available was lower in small hospitals. CONCLUSIONS There are areas of improvement with regard to knowledge of their disease in patients with UC followed in hospital clinics. Patients followed in small hospitals seem to know their disease better, are followed more frequently in the clinic, and have better access in case of a flare-up.
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Affiliation(s)
| | - Daniel Carpio
- Gastroenterología, Complexo Hospitalario Universitario de Pontevedra
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Ahmad A, Laverty AA, Alexakis C, Cowling T, Saxena S, Majeed A, Pollok RCG. Changing nationwide trends in endoscopic, medical and surgical admissions for inflammatory bowel disease: 2003-2013. BMJ Open Gastroenterol 2018; 5:e000191. [PMID: 29607052 PMCID: PMC5873541 DOI: 10.1136/bmjgast-2017-000191] [Citation(s) in RCA: 15] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/01/2017] [Revised: 02/14/2018] [Accepted: 02/15/2018] [Indexed: 12/12/2022] Open
Abstract
Background and study aims In the last decade, there have been major advances in inflammatory bowel disease (IBD) management but their impact on hospital admissions requires evaluation. We aim to investigate nationwide trends in IBD surgical/medical elective and emergency admissions, including endoscopy and cytokine inhibitor infusions, between 2003 and 2013. Patients and methods We used Hospital Episode Statistics and population data from the UK Office for National Statistics. Results Age-sex standardised admission rates increased from 76.5 to 202.9/100 000 (p<0.001) and from 69.5 to 149.5/100 000 (p<0.001) for Crohn’s disease (CD) and ulcerative colitis (UC) between 2003–2004 and 2012–2013, respectively. Mean length of stay (days) fell significantly for elective (from 2.6 to 0.7 and from 2.0 to 0.7 for CD and UC, respectively) and emergency admissions (from 9.2 to 6.8 and from 10.8 to 7.6 for CD and UC, respectively). Elective lower gastrointestinal (GI) endoscopy rates decreased from 6.3% to 3.7% (p<0.001) and from 18.4% to 17.6% (p=0.002) for CD and UC, respectively. Elective major abdominal surgery rates decreased from 2.8% to 1.0% (p<0.001) and from 4.9 to 2.4 (p=0.010) for CD and UC, respectively, with emergency rates also decreasing significantly for CD. Between 2006-2007 and 2012-2013, elective admission rates for cytokine-inhibitor infusions increased from 11.1 to 57.2/100 000 and from 1.4 to 12.1/100 000 for CD and UC, respectively. Conclusions Rising IBD hospital admission rates in the past decade have been driven by an increase in the incidence and prevalence of IBD. Lower GI endoscopy and surgery rates have fallen, while cytokine inhibitor infusion rates have risen. There has been a concurrent shift from emergency care to shorter elective hospital stays. These trends indicate a move towards more elective medical management and may reflect improvements in disease control.
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Affiliation(s)
- Ahmir Ahmad
- Department of Primary Care and Public Health, Imperial College London, London, UK
| | - Anthony A Laverty
- Department of Primary Care and Public Health, Imperial College London, London, UK
| | - Chris Alexakis
- Department of Gastroenterology, St George's University Hospitals NHS Foundation Trust and St George's University of London, London, UK
| | - Tom Cowling
- Department of Primary Care and Public Health, Imperial College London, London, UK
| | - Sonia Saxena
- Department of Primary Care and Public Health, Imperial College London, London, UK
| | - Azeem Majeed
- Department of Primary Care and Public Health, Imperial College London, London, UK
| | - Richard C G Pollok
- Department of Gastroenterology, St George's University Hospitals NHS Foundation Trust and St George's University of London, London, UK
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Thompson DG, O’Brien S, Kennedy A, Rogers A, Whorwell P, Lovell K, Richardson G, Reeves D, Bower P, Chew-Graham C, Harkness E, Beech P. A randomised controlled trial, cost-effectiveness and process evaluation of the implementation of self-management for chronic gastrointestinal disorders in primary care, and linked projects on identification and risk assessment. PROGRAMME GRANTS FOR APPLIED RESEARCH 2018. [DOI: 10.3310/pgfar06010] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
BackgroundChronic gastrointestinal disorders are major burdens in primary care. Although there is some evidence that enhancing self-management can improve outcomes, it is not known if such models of care can be implemented at scale in routine NHS settings and whether or not it is possible to develop effective risk assessment procedures to identify patients who are likely to become chronically ill.ObjectivesWhat is the clinical effectiveness and cost-effectiveness of an intervention to enhance self-management support for patients with chronic conditions when translated from research settings into routine care? What are the barriers and facilitators that affect the implementation of an intervention to enhance self-management support among patients, clinicians and organisations? Is it possible to develop methods to identify patients at risk of long-term problems with functional gastrointestinal disorders in primary care? Data sources included professional and patient interviews, patient self-report measures and data on service utilisation.DesignA pragmatic, two-arm, practice-level cluster Phase IV randomised controlled trial evaluating outcomes and costs associated with the intervention, with associated process evaluation using interviews and other methods. Four studies around identification and risk assessment: (1) a general practitioner (GP) database study to describe how clinicians in primary care record consultations with patients who experience functional lower gastrointestinal symptoms; (2) a validation of a risk assessment tool; (3) a qualitative study to explore GPs’ views and experiences; and (4) a second GP database study to investigate patient profiles in irritable bowel syndrome, inflammatory bowel disease and abdominal pain.SettingSalford, UK.ParticipantsPeople with long-term conditions and professionals in primary care.InterventionsA practice-level intervention to train practitioners to assess patient self-management capabilities and involve them in a choice of self-management options.Main outcome measuresPatient self-management, care experience and quality of life, health-care utilisation and costs.ResultsNo statistically significant differences were found between patients attending the trained practices and those attending control practices on any of the primary or secondary outcomes. The intervention had little impact on either costs or effects within the time period of the trial. In the practices, self-management tools failed to be normalised in routine care. Full assessment of the predictive tool was not possible because of variable case definitions used in practices. There was a lack of perceived clinical benefit among GPs.LimitationsThe intervention was not implemented fully in practice. Assessment of the risk assessment tool faced barriers in terms of the quality of codting in GP databases and poor recruitment of patients.ConclusionsThe Whole system Informing Self-management Engagement self-management (WISE) model did not add value to existing care for any of the long-term conditions studied.Future workThe active components required for effective self-management support need further study. The results highlight the challenge of delivering improvements to quality of care for long-term conditions. There is a need to develop interventions that are feasible to deliver at scale, yet demonstrably clinically effective and cost-effective. This may have implications for the piloting of interventions and linking implementation more clearly to local commissioning strategies.Trial registrationCurrent Controlled Trial ISRCTN90940049.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 6, No. 1. See the NIHR Journals Library website for further project information.
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Affiliation(s)
- David G Thompson
- Division of Diabetes, Endocrinology and Gastroenterology, University of Manchester, Manchester, UK
| | - Sarah O’Brien
- Institute of Infection and Global Health, University of Liverpool, Liverpool, UK
| | - Anne Kennedy
- National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Wessex, University of Southampton, Southampton, UK
| | - Anne Rogers
- National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Wessex, University of Southampton, Southampton, UK
| | - Peter Whorwell
- Division of Diabetes, Endocrinology and Gastroenterology, University of Manchester, Manchester, UK
| | - Karina Lovell
- Division of Nursing, Midwifery & Social Work, School of Health Sciences, University of Manchester, Manchester, UK
| | | | - David Reeves
- Centre for Biostatistics, School of Health Sciences, University of Manchester, Manchester, UK
| | - Peter Bower
- Centre for Primary Care, School of Health Sciences, University of Manchester, Manchester, UK
| | - Carolyn Chew-Graham
- Research Institute, Primary Care and Health Sciences, Faculty of Medicine and Health Sciences, Keele University, Keele, UK
| | - Elaine Harkness
- Division of Informatics, Imaging and Data Sciences, University of Manchester, Manchester, UK
| | - Paula Beech
- Stroke Rehabilitation Unit, Salford Royal Foundation Trust, Salford, UK
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Flamant M, Roblin X. Inflammatory bowel disease: towards a personalized medicine. Therap Adv Gastroenterol 2018; 11:1756283X17745029. [PMID: 29383027 PMCID: PMC5784543 DOI: 10.1177/1756283x17745029] [Citation(s) in RCA: 51] [Impact Index Per Article: 7.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/20/2017] [Indexed: 02/04/2023] Open
Abstract
The management of inflammatory bowel disease (IBD) has been transformed over the last two decades by the arrival of tumor necrosis factor (TNF) antagonist agents. Recently, alternative drugs have been approved, directed at leukocyte-trafficking molecules (vedolizumab) or other inflammatory cytokines (ustekinumab). New therapeutics are currently being developed in IBD and represent promising targets as they involve other mechanisms of action (JAK molecules, Smad 7 antisense oligonucleotide etc.). Beyond TNF antagonist agents, these alternative drugs are needed for early-stage treatment of patients with aggressive IBD or when the disease is resistant to conventional therapy. Personalized medicine involves the determination of patients with a high risk of progression and complications, and better characterization of patients who may respond preferentially to specific therapies. Indeed, more and more studies aim to identify factors predictive of drug response (corresponding to a specific signaling pathway) that could better manage treatment for patients with IBD. Once treatment has started, disease monitoring is essential and remote patient care could in some circumstances be an attractive option. Telemedicine improves medical adherence and quality of life, and has a positive impact on health outcomes of patients with IBD. This review discusses the current application of personalized medicine to the management of patients with IBD and the advantages and limits of telemedicine in IBD.
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Affiliation(s)
| | - Xavier Roblin
- CHU de Saint-Etienne, Avenue Albert Raimond, 42277 Saint Priest en Jarez, France
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Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health Qual Life Outcomes 2017; 15:177. [PMID: 28915891 PMCID: PMC5603012 DOI: 10.1186/s12955-017-0753-2] [Citation(s) in RCA: 67] [Impact Index Per Article: 8.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/29/2016] [Accepted: 09/07/2017] [Indexed: 12/16/2022] Open
Abstract
BACKGROUND This review aims to critically appraise and compare the measurement properties of inflammatory bowel disease (IBD)-specific health-related quality of life instruments. METHODS Medline, EMBASE and ISI Web of Knowledge were searched from their inception to May 2016. IBD-specific instruments for patients with Crohn's disease, ulcerative colitis or IBD were enrolled. The basic characteristics and domains of the instruments were collected. The methodological quality of measurement properties and measurement properties of the instruments were assessed. RESULTS Fifteen IBD-specific instruments were included, which included twelve instruments for adult IBD patients and three for paediatric IBD patients. All of the instruments were developed in North American and European countries. The following common domains were identified: IBD-related symptoms, physical, emotional and social domain. The methodological quality was satisfactory for content validity; fair in internal consistency, reliability, structural validity, hypotheses testing and criterion validity; and poor in measurement error, cross-cultural validity and responsiveness. For adult IBD patients, the IBDQ-32 and its short version (SIBDQ) had good measurement properties and were the most widely used worldwide. For paediatric IBD patients, the IMPACT-III had good measurement properties and had more translated versions. CONCLUSIONS Most methodological quality should be promoted, especially measurement error, cross-cultural validity and responsiveness. The IBDQ-32 was the most widely used instrument with good reliability and validity, followed by the SIBDQ and IMPACT-III. Further validation studies are necessary to support the use of other instruments.
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Affiliation(s)
- Xin-Lin Chen
- College of Basic Medical Science, Guangzhou University of Chinese Medicine, Guangzhou, China.
| | | | - Yi Wen
- The First Affiliated Hospital, The First Clinical College, Guangzhou University of Chinese Medicine, Guangzhou, China
| | - Tian-Wen Liu
- Guangdong Province Hospital of Chinese Medicine, Guangzhou University of Chinese Medicine, Guangzhou, China
| | - Xiao-Ying Li
- Jiangmen Wuyi Traditional Chinese Medicine Hospital, Jiangmen City, Guangdong Province, China
| | - Zheng-Kun Hou
- The First Affiliated Hospital, The First Clinical College, Guangzhou University of Chinese Medicine, Guangzhou, China
| | - Yue Hu
- College of Basic Medical Science, Guangzhou University of Chinese Medicine, Guangzhou, China
| | - Chuan-Wei Mo
- College of Basic Medical Science, Guangzhou University of Chinese Medicine, Guangzhou, China
| | - Feng-Bin Liu
- The First Affiliated Hospital, The First Clinical College, Guangzhou University of Chinese Medicine, Guangzhou, China.
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Nikolaus S, Schreiber S, Siegmund B, Bokemeyer B, Bästlein E, Bachmann O, Görlich D, Hofmann U, Schwab M, Kruis W. Patient Education in a 14-month Randomised Trial Fails to Improve Adherence in Ulcerative Colitis: Influence of Demographic and Clinical Parameters on Non-adherence. J Crohns Colitis 2017; 11:1052-1062. [PMID: 28486634 DOI: 10.1093/ecco-jcc/jjx062] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/17/2017] [Accepted: 05/08/2017] [Indexed: 12/21/2022]
Abstract
BACKGROUND AND AIM Recent observational studies document that non-adherence to mesalamine therapy during remission is frequent. We aimed to investigate patient impact of patient education using objective assessments of adherence. METHODS A 14-month randomised, prospective clinical trial of adherence to mesalamine was conducted in 248 patients with ulcerative colitis [UC], Colitis Activity Index [CAI] ≤ 9, receiving standard care [n = 122] versus a standardised patient education programme [n = 126]. Primary endpoint was adherence at all visits (5-aminosalicylic acid [5-ASA] urine levels). Secondary endpoints included quality of life (inflammatory bowel disease questionnaise [IBDQ]), disease activity, partial adherence, and self-assessment of adherence. RESULTS Patient allocation was well balanced. Baseline non-adherence was high in quiescent/mildly active UC [52.4%] without difference between the groups (52.4% of patients in the education group versus 52.5% in the standard care group [p = 0.99]). No difference between the intervention group and standard care was seen in IBDQ, partial adherence, self-assessment of adherence, or therapy satisfaction at all visits. We suggest a model in which individual risks for non-adherence are driven by patients with young age, short disease duration, and low education levels. CONCLUSIONS Non-adherence is frequent in a population with quiescent/mildly active UC. Although more than 25% of the population was not in remission at the various time points, no relationship between disease activity and adherence was seen over the 14-month observation period. Physicians should maximise their efforts to motivate high-risk patients for adherence. Future trials should use objective exposure assessments to examine the impact of continuous education and consultations on the background of individual risks to develop non-adherence.
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Affiliation(s)
- S Nikolaus
- Department of Internal Medicine I, University Hospital Schleswig-Holstein, Campus Kiel, Germany
| | - S Schreiber
- Department of Internal Medicine I, University Hospital Schleswig-Holstein, Campus Kiel, Germany
| | - B Siegmund
- Charité-Universitätsmedizin Berlin, Berlin, Germany
| | - B Bokemeyer
- Gastroenterologische Schwerpunktpraxis, Minden, Germany
| | | | - O Bachmann
- Medizinische Hochschule Hannover, Hannover, Germany
| | - D Görlich
- Institute of Biostatistics and Clinical Research, Westfälische Wilhelms-Universität Münster, Münster, Germany
| | - U Hofmann
- Dr Margarete Fischer-Bosch Institute of Clinical Pharmacology, Stuttgart and University of Tübingen, Tübingen,Germany
| | - M Schwab
- Dr Margarete Fischer-Bosch Institute of Clinical Pharmacology, Stuttgart and University of Tübingen, Tübingen, Germany.,Department of Clinical Pharmacology, University Hospital Tübingen, Tübingen, Germany
| | - W Kruis
- Evangelisches Krankenhaus Kalk, Köln, Germany
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Jeong ID, Park MI, Kim SE, Kim BJ, Kim SW, Kim JH, Sung HY, Oh TH, Kim YS. The Degree of Disease Knowledge in Patients with Gastroesophageal Reflux Disease: A Multi-center Prospective Study in Korea. J Neurogastroenterol Motil 2017; 23:385-391. [PMID: 28478662 PMCID: PMC5503288 DOI: 10.5056/jnm16123] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/08/2016] [Revised: 02/13/2017] [Accepted: 02/16/2017] [Indexed: 12/30/2022] Open
Abstract
Background/Aims Patient education has been shown to be beneficial in several diseases. To properly educate patients with gastroesophageal reflux disease (GERD), it is necessary to understand how much they already know about their disease. However, no study has examined the degree of disease knowledge in Korean patients with GERD. Therefore, we conducted this study to assess the degree of knowledge in such patients. Methods This multicenter prospective study was conducted from January 2014 to January 2015. A total of 746 patients (mean age, 52 years; 57.6% female) were enrolled from 7 hospitals in Korea. Inclusion criteria were diagnosis of GERD and ability to properly complete a survey. Degree of disease knowledge was assessed using the translated, validated Korean Urnes questionnaire, which consists of 22 items related to GERD. Results Mean percentage of correct answers was 46.3% and mean GERD knowledge score was 9.6. Degree of knowledge (mean percentage of correct answers) regarding etiology, prognosis, and treatment of GERD were 49.5%, 36.7%, and 37.5%, respectively. Degree of disease knowledge differed significantly according to age (P < 0.001), education (P < 0.001), income (P = 0.028), and occupation (P < 0.001). In multivariate analysis, using multiple logistic regression, the higher knowledge score group tended to have higher education and professional occupation. Conclusions The surveyed Korean patients had relatively low disease knowledge, suggesting that a GERD educational program may be beneficial in Korea. Formulation of a program is underway.
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Affiliation(s)
- In Du Jeong
- Department of Internal Medicine, Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan, Korea
| | - Moo In Park
- Department of Internal Medicine, Kosin University College of Medicine, Busan, Korea
| | - Sung Eun Kim
- Department of Internal Medicine, Kosin University College of Medicine, Busan, Korea
| | - Beom Jin Kim
- Department of Internal Medicine, Chung-Ang University College of Medicine, Seoul, Korea
| | - Sang Wook Kim
- Department of Internal Medicine, Chonbuk National University Medical School, Jeonju, Jeollabuk-do, Korea
| | - Jie-Hyun Kim
- Department of Internal Medicine, Yonsei University College of Medicine, Seoul, Korea
| | - Hye Young Sung
- Department of Internal Medicine, Wonkwang University College of Medicine, Iksan, Jeollabuk-do, Korea
| | - Tae-Hoon Oh
- Department of Internal Medicine, Inje University College of Medicine, Seoul, Korea
| | - Yeon Soo Kim
- Department of Internal Medicine, Hallym University College of Medicine, Chuncheon, Gangwon-do, Korea
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Gerfaud A, Bridoux-Henno L, Bretagne JF, Siproudhis L, Bouguen G, Dabadie A. Évaluation de la transition pédiatrie-gastroentérologie d’adultes des enfants atteints de maladie inflammatoire cryptogénique intestinale. Arch Pediatr 2017; 24:534-541. [DOI: 10.1016/j.arcped.2017.03.008] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/28/2016] [Revised: 01/26/2017] [Accepted: 03/10/2017] [Indexed: 01/28/2023]
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Berding A, Witte C, Gottschald M, Kaltz B, Weiland R, Gerlich C, Reusch A, Kruis W, Faller H. Beneficial Effects of Education on Emotional Distress, Self-Management, and Coping in Patients with Inflammatory Bowel Disease: A Prospective Randomized Controlled Study. Inflamm Intest Dis 2017; 1:182-190. [PMID: 29922675 DOI: 10.1159/000452989] [Citation(s) in RCA: 21] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/12/2016] [Accepted: 11/01/2016] [Indexed: 12/16/2022] Open
Abstract
BACKGROUND Patients with inflammatory bowel disease (IBD) suffer from various physical as well as psychological impairments, and patient education may help improve their well-being. Therefore, we developed a manualized education program for IBD patients addressing medical and psychological issues. This study aimed to evaluate it in a large controlled trial. METHODS A total of 181 IBD outpatients participated in a prospective, randomized, waitlist-controlled trial; assessments were made before as well as 2 weeks and 3 months after intervention. Analysis of covariance was used to assess intervention effects on disease-related worries and concerns (primary outcome), fear of progression, coping with anxiety, health competencies, health-related quality of life (HRQoL), perceived disease activity, symptoms of depression and anxiety, disease-related knowledge, and coping strategies. Participants' satisfaction with the program was also evaluated. RESULTS At 2 weeks and 3 months after intervention, we found significant large effects of our education program on skill and technique acquisition, knowledge, and coping with IBD. Moreover, we found significant medium effects on disease-related worries and concerns, fear of progression, coping with anxiety, constructive attitudes and approaches, as well as coping with disease-related negative emotions. The number of coping strategies used was significantly higher at 3 months. We did not find any effects on perceived disease activity, HRQoL, positive and active engagement in life, or symptoms of anxiety and depression. The program was rated very favorably by the attendees. CONCLUSION Our education program contributed to improvements in psychological distress, self-management skills, and coping and was appreciated by its attendees.
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Affiliation(s)
- Anja Berding
- German Crohn's and Colitis Association (DCCV e.V.), Berlin, Germany.,Department of Medical Psychology, Medical Sociology, and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany
| | - Christine Witte
- German Crohn's and Colitis Association (DCCV e.V.), Berlin, Germany
| | | | - Birgit Kaltz
- German Crohn's and Colitis Association (DCCV e.V.), Berlin, Germany
| | - Romy Weiland
- Department of Medical Psychology, Medical Sociology, and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany
| | - Christian Gerlich
- Department of Medical Psychology, Medical Sociology, and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany
| | - Andrea Reusch
- Department of Medical Psychology, Medical Sociology, and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany
| | - Wolfgang Kruis
- Department of Internal Medicine, Protestant Hospital Kalk, Cologne, Germany
| | - Hermann Faller
- Department of Medical Psychology, Medical Sociology, and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany
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Abstract
BACKGROUND The Inflammatory bowel disease (IBD) Disability Index is a validated tool that evaluates functional status; however, it is used mainly in the clinical trial setting. We describe the use of an iterative Delphi consensus process to develop the IBD Disk-a shortened, self-administered adaption of the validated IBD Disability Index-to give immediate visual representation of patient-reported IBD-related disability. METHODS In the preparatory phase, the IBD CONNECT group (30 health care professionals) ranked IBD Disability Index items in the perceived order of importance. The Steering Committee then selected 10 items from the IBD Disability Index to take forward for inclusion in the IBD Disk. In the consensus phase, the items were refined and agreed by the IBD Disk Working Group (14 gastroenterologists) using an online iterative Delphi consensus process. Members could also suggest new element(s) or recommend changes to included elements. The final items for the IBD Disk were agreed in February 2016. RESULTS After 4 rounds of voting, the following 10 items were agreed for inclusion in the IBD Disk: abdominal pain, body image, education and work, emotions, energy, interpersonal interactions, joint pain, regulating defecation, sexual functions, and sleep. All elements, except sexual functions, were included in the validated IBD Disability Index. CONCLUSIONS The IBD Disk has the potential to be a valuable tool for use at a clinical visit. It can facilitate assessment of inflammatory bowel disease-related disability relevant to both patients and physicians, discussion on specific disability-related issues, and tracking changes in disease burden over time.
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Chen RB. Self-management for patients with inflammatory bowel disease in a gastroenterology ward in China: a best practice implementation project. ACTA ACUST UNITED AC 2016; 14:271-277. [PMID: 27941520 DOI: 10.11124/jbisrir-2016-003180] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/31/2022]
Abstract
BACKGROUND Globally, there is an increasing incidence of inflammatory bowel disease. It is very important for patients to be involved with self-management that can optimize personal heath behavior to control the disease. OBJECTIVES The aim of this project was to increase nursing staff knowledge of inflammatory bowel disease discharge guidance, and to improve the quality of education for discharged patients, thereby improving their self-management. METHODS A baseline audit was conducted by interviewing 30 patients in the gastroenterology ward of Huadong Hospital, Fudan University. The project utilized the Joanna Briggs Institute's Practical Application of Clinical Evidence System and Getting Research Into Practice audit tools for promoting quality of education and self-management of patients with inflammatory bowel disease. Thirty patients were provided with written materials, which included disease education and information regarding self-management. A post-implementation audit was conducted. RESULTS There was improvement of education prior to discharge and dietary consultancy in the gastroenterology ward. Self-management plans utilizing written materials only were not sufficient for ensuring sustainability of the project. CONCLUSIONS Comprehensive self-management education can make a contribution to improving awareness of the importance of self-management for patients with inflammatory bowel disease.
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Affiliation(s)
- Ruo-Bing Chen
- Gastroenterology Ward, Huadong Hospital Affiliated to Fudan University, Shanghai, China
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Dures E, Fraser I, Almeida C, Peterson A, Caesley J, Pollock J, Ambler N, Morris M, Hewlett S. Patients' Perspectives on the Psychological Impact of Inflammatory Arthritis and Meeting the Associated Support Needs: Open-Ended Responses in a Multi-Centre Survey. Musculoskeletal Care 2016; 15:175-185. [PMID: 27605495 DOI: 10.1002/msc.1159] [Citation(s) in RCA: 21] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/07/2022]
Abstract
OBJECTIVES Psychological support for inflammatory arthritis is recommended in rheumatology treatment guidelines. Previous research found that high numbers of patients would access such support but that provision is often inconsistent and inadequate. The present study explored patients' perspectives on the nature of the psychological impact of inflammatory arthritis and how to meet the associated support needs. METHODS A cross-sectional survey was conducted, using questionnaires which included three open-ended questions about helpful and unhelpful psychological support. The questionnaires were administered to 1,080 patients at six regional rheumatology units across England, and 1,200 members of a national patient charity. RESULTS A total of 1,210 (53%) patients completed the questionnaire, with 779 (64%) responding to the open-ended questions: 80% female; mean age 59 years (12.6); disease duration <5 years (40%), 5-10 years (20%), >10 years (40%). Data were analysed using a hybrid content analysis. Four categories emerged: challenges of an altered life course (negative emotions, isolation and loneliness, a dysfunctional body, loss, strained relationships, and fears for the future); poor communication (feeling unheard, clinicians' reluctance to address psychological issues, a lack of help to manage pain and fatigue, and struggling to ask for help); understood by others (sharing with people who have arthritis, supportive family and friends, whole team support, and understanding from clinicians); and acquiring strategies (ways of coping). CONCLUSIONS Psychological distress was commonplace, and often attributed to fatigue and pain. In addition to peers and family, patients looked to the rheumatology team for validation and support. Further research will address the skills training needs of rheumatology teams to meet patients' psychological support requirements.
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Affiliation(s)
- Emma Dures
- Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
| | - Isobel Fraser
- Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
| | - Celia Almeida
- Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
| | - Alice Peterson
- Academic Rheumatology, University Hospitals Bristol NHS Trust, Bristol, UK
| | - Judy Caesley
- Academic Rheumatology, University Hospitals Bristol NHS Trust, Bristol, UK
| | - Jon Pollock
- Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
| | | | - Marianne Morris
- Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
| | - Sarah Hewlett
- Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
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Conley S, Redeker N. A Systematic Review of Self-Management Interventions for Inflammatory Bowel Disease. J Nurs Scholarsh 2016; 48:118-27. [PMID: 26756193 PMCID: PMC5480612 DOI: 10.1111/jnu.12189] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/11/2015] [Indexed: 12/16/2022]
Abstract
PURPOSE To conduct a systematic review of self-management interventions for adults with inflammatory bowel disease (IBD) to (a) describe self-management skills in the interventions and (b) describe the effects of the interventions on the health-related outcomes measured. DESIGN Systematic review of self-management interventions for adults with IBD using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. METHODS The search was conducted using Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, and Proquest databases. Search terms were inflammatory bowel disease OR Crohn* disease OR ulcerative colitis AND self-management. We also used additional limits (adults ≥ 18 years of age and published in English). The self-management skills were organized according to Lorig and Holman's five self-management skills. FINDINGS Six reports met the inclusion criteria. One intervention contained all five of the self-management skills. Most interventions contained two skills. Four studies demonstrated positive effects of self-management on disease activity. Two interventions revealed positive effects on disease-specific health-related quality of life (HRQOL), and one intervention revealed positive effects on generic HRQOL. One study showed positive effects of symptoms. CONCLUSIONS The interventions reviewed varied in the approaches, theoretical perspectives, self-management skills, and outcomes measured. Additional research is needed to understand which are the active components of self-management. CLINICAL RELEVANCE Support for self-management skills is an important component of nursing care for people with IBD.
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Affiliation(s)
- Samantha Conley
- Delta Mu, Doctoral Student, Yale School of Nursing, Yale University, West Haven, CT, USA
| | - Nancy Redeker
- Delta Mu, Professor, Yale School of Nursing, Yale University, West Haven, CT, USA
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[Impact of the incorporation of a nurse in an inflammatory bowel disease unit]. GASTROENTEROLOGIA Y HEPATOLOGIA 2016; 39:318-23. [PMID: 26826777 DOI: 10.1016/j.gastrohep.2015.09.004] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 06/21/2015] [Revised: 09/09/2015] [Accepted: 09/09/2015] [Indexed: 11/23/2022]
Abstract
INTRODUCTION Multidisciplinary units are needed because of the growing complexity and volume of patients with inflammatory bowel disease (IBD). OBJECTIVES To evaluate the healthcare, economic and research impact of incorporating a nurse into the IBD unit of the Puerta de Hierro Majadahonda University Hospital. METHODS We prospectively recorded the activity carried out by the nurse of the IBD unit from March 2010 to December 2014. RESULTS During this period, healthcare demand progressively increased, with 1,558 patients being attended by our unit. The healthcare provided by the nurse included 5,293 electronic mails and 678 telephone calls. We estimated that this activity represented a saving of 3,504 in-person medical consultations and 852 accident and emergency department visits. Other activities consisted of monitoring treatments with biological and non-biological agents (8,371 laboratory tests), extraction of 342 blood samples, follow-up of 1047 diagnostic tests and consultations with other medical specialties, health education in self-administration of drugs in 114 patients, the performance of 158 granulocyte apheresis procedures, and participation in 25 research projects. CONCLUSION The incorporation of a specialised nurse in an IBD unit had major economic, healthcare and research benefits.
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Khan S, Dasrath F, Farghaly S, Otobo E, Riaz MS, Rogers J, Castillo A, Atreja A. Unmet Communication and Information Needs for Patients with IBD: Implications for Mobile Health Technology. ACTA ACUST UNITED AC 2016; 12. [PMID: 28217532 PMCID: PMC5312751 DOI: 10.9734/bjmmr/2016/21884] [Citation(s) in RCA: 30] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/08/2023]
Abstract
AIMS In order to develop an application that addresses the most significant challenges facing IBD patients, this qualitative study explored the major hurdles of living with IBD, the information needs of IBD patients, and how application technology may be used to improve quality of life. METHODS 15 IBD patients participated in two focus groups of 120 minutes each. Data collection was achieved by combining focus groups with surveys and direct observation of patients looking at a patient-engaged app (HealthPROMISE) screenshots. The survey elicited information on demographics, health literacy and quality of life through the Short IBD Questionnaire (SIBDQ). RESULTS The needs of IBD patients center around communication as it relates to both patient information needs and navigating the social impacts of IBD on patients' lives: Communication Challenges regarding Information Needs: Patients cited a doctor-patient communication divide where there is a continued lack of goal setting when discussing treatments and a lack of objectivity in disease control. When objectively compared with the SIBDQ, nearly half of the patients in the focus groups wrongly estimated their IBD control.Communication Challenges regarding Social Impacts of IBD: Patients strongly felt that while IBD disrupts routines, adds significant stress, and contributes to a sense of isolation, the impact of these issues would be significantly alleviated through more conversation and better support.Implication for Mobile Health Solutions: Patients want a tool that improves tracking of symptoms, medication adherence and provides education. Physician feedback to patient input on an application is required for long-term sustainability. CONCLUSIONS IBD patients need mobile health technologies that evaluate disease control and the goals of care. Patients feel an objective assessment of their disease control, goal setting and physician feedback will greatly enhance utilization of all mobile health applications.
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Affiliation(s)
- Sameer Khan
- Icahn School of Medicine at Mount Sinai, New York, USA
| | | | - Sara Farghaly
- Icahn School of Medicine at Mount Sinai, New York, USA
| | - Emamuzo Otobo
- Icahn School of Medicine at Mount Sinai, New York, USA
| | | | - Jason Rogers
- Icahn School of Medicine at Mount Sinai, New York, USA
| | | | - Ashish Atreja
- Icahn School of Medicine at Mount Sinai, New York, USA
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