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Barreda C, Moreno MA. Social Media and the Adolescent Transplant Recipient. Pediatr Transplant 2025; 29:e14899. [PMID: 39655463 PMCID: PMC11629138 DOI: 10.1111/petr.14899] [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] [Received: 10/30/2023] [Revised: 10/29/2024] [Accepted: 11/11/2024] [Indexed: 12/12/2024]
Abstract
INTRODUCTION Social media is interwoven into adolescents' daily lives. Many adolescents utilize digital technology in their healthcare journeys, as do their caregivers. Health systems increasingly seek ways to leverage these new tools toward supporting and caring for patients. These approaches may be of particular importance of adolescents, as well as healthcare systems, in providing care for chronic and serious illness including transplant patients. METHODS This review article will begin with an overview of adolescent social media use. We will then consider ways in which social media may impact adolescents' healthcare experience including identity development and adherence. RESULTS Caregivers may leverage social media for information seeking. Families may use social media to seek social support, as well as potential donors. For healthcare systems, social media may enhance research efforts as well as information delivery. DISCUSSION Future directions include studies examining how social media can support adolescent transplant patients. incorporation of youth voice into these studies may enhance application of findings to clinical practice.
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Affiliation(s)
- Christina Barreda
- Department of PediatricsUniversity of Wisconsin‐MadisonMadisonWisconsinUSA
| | - Megan A. Moreno
- Department of PediatricsUniversity of Wisconsin‐MadisonMadisonWisconsinUSA
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Muru OM, Pop CS, Filip PV, Tiucă N, Diaconu LS. A Cross-Sectional Evaluation of Disability in Inflammatory Bowel Disease Using IBD Disk in a Tertiary Center from Romania. J Clin Med 2024; 13:7168. [PMID: 39685627 DOI: 10.3390/jcm13237168] [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: 10/23/2024] [Revised: 11/20/2024] [Accepted: 11/23/2024] [Indexed: 12/18/2024] Open
Abstract
Background/Objectives: The management of inflammatory bowel disease (IBD) includes, besides the control of symptoms, the prevention of organ damage and the improvement of the overall disability. Methods: A single-centered, cross-sectional, non-interventional and population-based study was conducted between October 2023 and August 2024 in the Department of Internal Medicine 2 and Gastroenterology of Bucharest Emergency University Hospital to assess the disease disability and quality of life impact using IBD-disk and correlation with different parameters. Results: We included 112 patients; their mean age was 52.35 ± 16.67 years, with a disease duration of 114.9 ± 97.93 months. The majority of patients were represented by men (51.79%). We observed a strong correlation between the CDAI score and overall disability compared to the Mayo score for UC (p = 0.0068). Also, patients with CD and stenotic patterns, as well as the presence of extraintestinal complications, have associated high disability scores. Low hemoglobin levels are associated with high disability (p = 0.0164), while biological treatment is associated with low disability (p = 0.0481). Conclusions: IBD-disk can be used as a valuable tool to assess disability in patients with IBD, also in terms of the activity of the disease, but mostly in terms of the psychological burden of the disease.
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Affiliation(s)
- Oana-Maria Muru
- Department of Internal Medicine 2 and Gastroenterology, Bucharest University Emergency Hospital, 050098 Bucharest, Romania
- Carol Davila University of Medicine, 050474 Bucharest, Romania
| | - Corina Silvia Pop
- Department of Internal Medicine 2 and Gastroenterology, Bucharest University Emergency Hospital, 050098 Bucharest, Romania
- Carol Davila University of Medicine, 050474 Bucharest, Romania
| | - Petruța Violeta Filip
- Department of Internal Medicine 2 and Gastroenterology, Bucharest University Emergency Hospital, 050098 Bucharest, Romania
- Carol Davila University of Medicine, 050474 Bucharest, Romania
| | - Nicoleta Tiucă
- Department of Internal Medicine 2 and Gastroenterology, Bucharest University Emergency Hospital, 050098 Bucharest, Romania
- Carol Davila University of Medicine, 050474 Bucharest, Romania
| | - Laura Sorina Diaconu
- Department of Internal Medicine 2 and Gastroenterology, Bucharest University Emergency Hospital, 050098 Bucharest, Romania
- Carol Davila University of Medicine, 050474 Bucharest, Romania
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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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Tanaka M, Kawakami A, Sakagami K, Terai T, Fernandez J, Keefer L, Ito H. Development and validation of a 13-item short version of the inflammatory bowel disease self-efficacy scale. BMC Gastroenterol 2024; 24:190. [PMID: 38822266 PMCID: PMC11141053 DOI: 10.1186/s12876-024-03206-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/13/2023] [Accepted: 03/15/2024] [Indexed: 06/02/2024] Open
Abstract
BACKGROUND The inflammatory bowel disease self-efficacy scale (IBD-SES) is an instrument used across many countries to measure important health outcomes of patients with inflammatory bowel disease (IBD). We aimed to develop and validate a substantially shorter version of this scale to reduce patients' response burden. METHODS A total of 919 patients with IBD, 482 recruited from an IBD clinic and 437 recruited online, completed the Japanese version of the original, 29-item IBD-SES. These data were then used to develop a shorter version of the scale. The original 29 items of the IBD-SES were reduced with three analytic steps: assessing ceiling and floor effect, testing correlation between items, and assessing test-retest reliability. The resulting 13-item IBD-SES was evaluated for construct validity by confirmatory factor analysis, criterion validity by Pearson correlation coefficients with original version, and internal consistency by item-total correlations and the Cronbach's α coefficient. RESULTS The short version consisted of the same four subscales "managing stress and emotions," "managing medical care," "managing symptoms and disease," and "maintaining remission" as the original scale. The fit indices of the final model were as follows: normed chi-square, 7.18 (p < 0.001); comparative fit index, 0.94; goodness-of-fit index, 0.93; adjusted goodness-of-fit index, 0.89; parsimony goodness-of-fit index, 0.60; and root mean square error of approximation, 0.084. Correlation of each subscale with the original scale was high (0.97-0.98). Cronbach's α for each subscale ranged from 0.68 to 0.86. CONCLUSIONS A short version of the IBD-SES was developed. The results confirmed the improved validity, reliability, and psychometric properties of the IBD-SES. TRIAL REGISTRATION Not applicable.
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Affiliation(s)
- Makoto Tanaka
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan.
| | - Aki Kawakami
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | | | - Tomoko Terai
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Jovelle Fernandez
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
- L.L.C., Middletown, DE, USA
| | - Laurie Keefer
- Icahn School of Medicine at Mount Sinai, New York City, NY, USA
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Norouzkhani N, Faramarzi M, Bahari A, Shokri Shirvani J, Shirvani YE, Eslami S, Tabesh H. Effect of a gamified mobile-based self-management application on disease activity index, quality of life, and mental health in adults with inflammatory bowel disease: A protocol of a randomized controlled trial study. Health Sci Rep 2024; 7:e2109. [PMID: 38779219 PMCID: PMC11109478 DOI: 10.1002/hsr2.2109] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/19/2023] [Revised: 03/26/2024] [Accepted: 04/22/2024] [Indexed: 05/25/2024] Open
Abstract
Background and Aims Inflammatory bowel disease (IBD) is a chronic inflammatory gastrointestinal tract disease subdivided into Crohn's disease (CD) and ulcerative colitis (UC). There is currently no cure for IBD, and individuals with IBD frequently experience a lower health-related quality of life (HRQOL) than the general population. Gamification has become an increasingly popular topic in recent years. Adapting game design concepts to nongaming contexts represents a novel and potential approach to changing user engagement. This study will be conducted with the aim of evaluating the effect of a gamified mobile-based self-management application on disease activity index, quality of life, and mental health in adults with IBD. Methods A multicenter, parallel, two-arm, exploratory randomized controlled trial with a 6-month follow-up per patient will be designed to compare the impact of the gamified mobile-based tele-management system on primary and secondary health outcomes and outpatient visits in 210 patients with all types of IBD which are divided equally into a control group with standard care and an intervention group which will use the developed mobile application named MY IBD BUDDY. All patients will attend study visits at baseline, 12 and 24 weeks, and routine IBD clinic visits or telephone consultations based on randomization group assignment. Disease activity or disease activity index, mental health (anxiety and depression) symptoms, quality of life, self-efficacy, and IBD-specific knowledge will be measured at baseline with two follow-ups at 12 and 24 weeks. Conclusions In sum, the outcomes of our trial will demonstrate the impact of the gamified mobile-based self-management system on disease activity, quality of life, and anxiety and depression by means of interactive care and patient empowerment. Trial Registration IRCT: IRCT20200613047757N1. Registered November 16, 2021. Prospectively registered and visible at OSF (https://doi.org/10.17605/OSF.IO/AWFY9).
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Affiliation(s)
- Narges Norouzkhani
- Department of Medical Informatics, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
| | - Mahbobeh Faramarzi
- Population, Family and Spiritual Health Research Center, Health Research InstituteBabol University of Medical SciencesBabolIran
| | - Ali Bahari
- Department of Internal Medicine, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
| | | | | | - Saeid Eslami
- Department of Medical Informatics, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
- Pharmaceutical Research CenterMashhad University of Medical SciencesMashhadIran
| | - Hamed Tabesh
- Department of Medical Informatics, Faculty of MedicineMashhad University of Medical SciencesMashhadIran
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DuBois KE, Blake CE, Rudisill C, Harrison SE, Hébert JR. Use of Treatment and Self-Management Methods: Perspectives and Decisions of Patients With Ulcerative Colitis. Am J Lifestyle Med 2024:15598276241243300. [PMID: 39554970 PMCID: PMC11562390 DOI: 10.1177/15598276241243300] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/19/2024] Open
Abstract
Patients with Ulcerative Colitis (UC) seek a variety of methods to manage the physical and psychosocial burdens of illness on daily life. This study examines how individuals with UC: (1) utilize treatment and self-management methods and (2) make decisions regarding their use of these methods throughout the disease course. Adults living with UC ≥5 years and experienced ≥1 disease flare, participated in individual, semi-structured qualitative interviews. Transcripts were thematically analyzed using a constant comparative approach in NVivo12®. Participants (N = 21) described their decisions to utilize medical, lifestyle, and complementary methods, which were shaped by sources of information, attitudes toward self-management, and personal motivations. The poor quality of life associated with the daily burden of living with UC emerged as a primary motive for exploration and utilization of treatment and management methods. Participants reported primarily utilizing treatment and management methods as reactive responses to flares instead of preventive measures. Results provide insight into patient decision-making and may inform individualized patient care, improve patient-provider communication, and guide interdisciplinary efforts to support self-management among patients with UC. Findings highlight a need for greater focus on promoting preventive self-management lifestyle behaviors to protect against disease activity and progressive impairment.
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Affiliation(s)
- Kelli E. DuBois
- Prevention Research Center, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (KED)
- Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (KED, CEB, CR)
| | - Christine E. Blake
- Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (KED, CEB, CR)
| | - Caroline Rudisill
- Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (KED, CEB, CR)
| | - Sayward E. Harrison
- Department of Psychology, College of Arts and Sciences, University of South Carolina, Columbia, SC, USA (SEH)
| | - James R. Hébert
- Cancer Prevention and Control Program, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (JRH)
- Department of Epidemiology and Biostatistics, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (JRH)
- Department of Nutrition, Connecting Health Innovations, LLC, Columbia, SC, USA (JRH)
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Rohde JA, Saffer AJ, Zhao X. Health discussion network characteristics among a sample of people with inflammatory bowel disease. Chronic Illn 2024; 20:105-116. [PMID: 36949555 DOI: 10.1177/17423953231164794] [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: 03/24/2023]
Abstract
OBJECTIVES This study examined the health discussion networks (HDNs) of people with inflammatory bowel disease (IBD). We sought to test if HDN characteristics were associated with IBD management self-efficacy outcomes. METHODS We recruited a sample of adults with IBD (N = 112) in December 2020 to take an online survey. Participants listed up to five people (alters) who they discussed their health with, and we used those data to construct individual HDNs. Participants provided demographic information about alters, and characterized alter by relationship, closeness, and support provided. We used multivariable regression to examine associations of HDN characteristics with IBD symptoms, remission, and emotions management self-efficacy outcomes. RESULTS Participants reported data for 412 alters (mean HDN size: 3.68). Alters were mostly friends (40%) or family members (36%); few were healthcare workers (6%). In multivariable analyses, HDN size was associated with remission and emotions management self-efficacy (ps < .05), and the amount of support offered by alters was associated with emotions management self-efficacy (p < .05). DISCUSSION HDN size and alter support variables were associated with some IBD management self-efficacy outcomes among our study sample. These findings provide empirical evidence about HDNs among people with IBD and support the notion that disease management is a collective effort.
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Affiliation(s)
- Jacob A Rohde
- Cancer Prevention Fellowship Program, Division of Cancer Prevention, National Cancer Institute, Bethesda, MD, USA
| | - Adam J Saffer
- Hubbard School of Journalism and Mass Communication, University of Minnesota Twin Cities, Minneapolis, MN, USA
| | - Xinyan Zhao
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
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de Barros JR, Alencar RA, Saad-Hossne R, Sassaki LY. Development of the Nursing Assessment Tool for the Patient With Inflammatory Bowel Disease. Gastroenterol Nurs 2024; 47:92-100. [PMID: 38567852 DOI: 10.1097/sga.0000000000000785] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/02/2023] [Accepted: 08/16/2023] [Indexed: 04/05/2024] Open
Abstract
This study aims to develop and validate a nursing assessment tool for patients with inflammatory bowel disease. In this cross-sectional descriptive study using a quantitative approach, nurses were invited to participate. The Delphi technique was used to obtain a consensus among expert nurses. Descriptive analysis was used for each item on the nursing assessment tool. Overall, 345 nurses were identified; 32 were eligible as experts and 13 validated the consultation. Of the 13 expert nurses, most were female (11, 84.62%), their mean age was 46.36 ± 10.59 years, eight (61.54%) graduated from public institutions, and eight (61.54%) had a master's degree. The initial version had 106 items, which was reduced to 95 items. The content of four domains (identification, health-disease profile, psychobiological needs, and physical examination) was validated in two rounds about the content with more than 80% of agreement. Two domains (sociodemographic data and health conditions, and personal cares) were validated in the first round with more than 80% of agreement. All domains were validated for their appearance during the first round with more than 80% of agreement. The Nursing Assessment Tool for Patients with Inflammatory Bowel Disease (IBD) had a considerable level of agreement regarding content and appearance validation in all dimensions.
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Affiliation(s)
- Jaqueline Ribeiro de Barros
- Jaqueline Ribeiro de Barros, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rúbia Aguiar Alencar, PhD, is from the Department of Nursing, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rogério Saad-Hossne, MD, PhD, is from the Department of Surgery, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Ligia Yukie Sassaki, MD, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
| | - Rúbia Aguiar Alencar
- Jaqueline Ribeiro de Barros, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rúbia Aguiar Alencar, PhD, is from the Department of Nursing, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rogério Saad-Hossne, MD, PhD, is from the Department of Surgery, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Ligia Yukie Sassaki, MD, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
| | - Rogério Saad-Hossne
- Jaqueline Ribeiro de Barros, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rúbia Aguiar Alencar, PhD, is from the Department of Nursing, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rogério Saad-Hossne, MD, PhD, is from the Department of Surgery, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Ligia Yukie Sassaki, MD, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
| | - Ligia Yukie Sassaki
- Jaqueline Ribeiro de Barros, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rúbia Aguiar Alencar, PhD, is from the Department of Nursing, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Rogério Saad-Hossne, MD, PhD, is from the Department of Surgery, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
- Ligia Yukie Sassaki, MD, PhD, is from the Department of Internal Medicine, São Paulo State University (UNESP), Medical School, Botucatu, Brazil
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Wurz A, Duchek D, Ellis K, Bansal M, Carrier ME, Tao L, Dyas L, Kwakkenbos L, Levis B, El-Baalbaki G, Rice DB, Wu Y, Henry RS, Bustamante L, Harb S, Hebblethwaite S, Patten SB, Bartlett SJ, Varga J, Mouthon L, Markham S, Thombs BD, Culos-Reed SN. A qualitative interview study exploring the psychological health impacts of the SPIN-CHAT program among people with systemic sclerosis at the onset of COVID-19: perceptions of trial participants and research team members. Disabil Rehabil 2024; 46:533-545. [PMID: 36708187 DOI: 10.1080/09638288.2023.2169775] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/03/2022] [Accepted: 01/13/2023] [Indexed: 01/29/2023]
Abstract
PURPOSE Explore trial participants' and research team members' perceptions of the impact of the videoconference-based, supportive care program (SPIN-CHAT Program) during early COVID-19 for individuals with systemic sclerosis (SSc). METHODS Data were collected cross-sectionally. A social constructivist paradigm was adopted, and one-on-one videoconference-based, semi-structured interviews were conducted with SPIN-CHAT Trial participants and research team members. A hybrid inductive-deductive approach and reflexive thematic analysis were used. RESULTS Of the 40 SPIN-CHAT Trial participants and 28 research team members approached, 30 trial participants (Mean age = 54.9; SD = 13.0 years) and 22 research team members agreed to participate. Those who took part in interviews had similar characteristics to those who declined. Five themes were identified: (1) The SPIN-CHAT Program conferred a range of positive psychological health outcomes, (2) People who don't have SSc don't get it: The importance of SSc-specific programming, (3) The group-based format of the SPIN-CHAT Program created a safe space to connect and meet similar others, (4) The structure and schedule of the SPIN-CHAT Program reduced feelings of boredom and contributed to enhanced psychological health, (5) The necessity of knowledge, skills, and tools to self-manage SSc and navigate COVID-19. CONCLUSION Participants' and research team members' perspectives elucidated SPIN-CHAT Program benefits and how these benefits may have been realized. Results underscore the importance of social support from similar others, structure, and self-management to enhance psychological health during COVID-19. TRIAL REGISTRATION clinicaltrials.gov (NCT04335279)IMPLICATIONS FOR REHABILITATIONThe videoconference-based, supportive care SPIN-CHAT Program enhanced psychological health amongst individuals affected by systemic sclerosis.SPIN-CHAT Program participants and research team members shared that being around similar others, program structure, and self-management support were important and may have contributed to enhanced psychological health.Further efforts are required to explore experiences within supportive care programs to better understand if and how psychological health is impacted.
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Affiliation(s)
- Amanda Wurz
- School of Kinesiology, University of the Fraser Valley, Chilliwack, Canada
- Faculty of Kinesiology, University of Calgary, Calgary, Canada
| | - Delaney Duchek
- Faculty of Kinesiology, University of Calgary, Calgary, Canada
| | - Kelsey Ellis
- Faculty of Kinesiology, University of Calgary, Calgary, Canada
| | - Mannat Bansal
- Faculty of Kinesiology, University of Calgary, Calgary, Canada
| | - Marie-Eve Carrier
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
| | - Lydia Tao
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
| | - Laura Dyas
- National Scleroderma Foundation, Michigan Chapter, Southfield, MI, USA
| | - Linda Kwakkenbos
- Clinical Psychology, Radboud University, Nijmegen, The Netherlands
- Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands
- IQ Healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands
- Radboudumc Center for Mindfulness, Department of Psychiatry, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands
| | - Brooke Levis
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
- Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, Canada
- Centre for Prognosis Research, School of Primary, Community and Social Care, Keele University, Staffordshire, UK
| | | | - Danielle B Rice
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
- Department of Psychology, McGill University, Montreal, Canada
| | - Yin Wu
- Department of Psychiatry, McGill University, Montreal, Canada
| | - Richard S Henry
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
- Department of Psychology, McGill University, Montreal, Canada
| | - Laura Bustamante
- Department of Applied Human Sciences, Concordia University, Montreal, Canada
| | - Sami Harb
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
- Department of Psychiatry, McGill University, Montreal, Canada
| | | | - Scott B Patten
- Department of Community Health Sciences, University of Calgary, Calgary, Canada
- Hotchkiss Brain Institute and O'Brien Institute for Public Health, University of Calgary, Calgary, Canada
| | - Susan J Bartlett
- Department of Medicine, McGill University, Montreal, Canada
- Research Institute, McGill University Health Centre, Montreal, Canada
| | - John Varga
- University of Michigan, Ann Arbor, MI, USA
| | - Luc Mouthon
- Service de Médecine Interne, Centre de Référence Maladies Auto-immunes et Systémiques Rares d'Ile de France, Hôpital Cochin, Assistance Publique - Hôpitaux de Paris (APHP), Paris, France
- APHP-CUP, Hôpital Cochin, Université de Paris, Paris, France
| | - Sarah Markham
- Department of Biostatistics and Health Informatics, King's College London, London, UK
| | - Brett D Thombs
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
- Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, Canada
- Department of Psychology, McGill University, Montreal, Canada
- Department of Medicine, McGill University, Montreal, Canada
- Biomedical Ethics Unit, McGill University, Montreal, Canada
| | - S Nicole Culos-Reed
- Faculty of Kinesiology, University of Calgary, Calgary, Canada
- Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada
- Department of Psychosocial Resources, Tom Baker Cancer Centre, Cancer Care, Alberta Health Services, Calgary, Canada
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Hawkins RL, Bull E. Healthcare professional communication behaviours, skills, barriers, and enablers: Exploring the perspectives of people living with Inflammatory Bowel Disease. Health Psychol Open 2024; 11:20551029241257782. [PMID: 38832322 PMCID: PMC11145995 DOI: 10.1177/20551029241257782] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/05/2024] Open
Abstract
This qualitative study conceptualised effective communication behaviours of healthcare professionals (gastroenterologists, surgeons, nurses, and general practitioners) and explored communication barriers and facilitators from the perspective of adults with Inflammatory Bowel Disease (IBD). Seventeen qualitative interviews were conducted with people living with IBD in the UK or USA (n = 17) and their spouses (n = 4). An inductive content analysis was firstly applied to participants' accounts to define which healthcare professionals' behaviours and skills were perceived as essential for effective communication. An inductive reflexive thematic analysis elucidated themes of perceived barriers and facilitators experienced when communicating with their IBD healthcare professionals. Thirty-three provider communication behaviours were grouped into nine healthcare professional skills. Five themes encompassed 11 barriers and facilitators: professionals' knowledge and behaviour, unequal power, patient navigation skills, time constraints and demand, and continuity and collaboration of care. For patients and some spouses, enhancing communication in IBD services means increasing patient, family, and health professional knowledge, encouraging collaborative partnership working, and promoting healthcare professional skills to communicate effectively within the reality of time restraints.
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Affiliation(s)
- Rachel L Hawkins
- Manchester Metropolitan University, UK
- The University of Sheffield, UK
| | - Eleanor Bull
- Manchester Metropolitan University, UK
- The University of Manchester, UK
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11
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Mizuno H, Katashima M, Sakagami K, Fujimoto Y, Murauchi C, Seto N. Factors of Self-Care Agency in Patients with Inflammatory Bowel Disease in Japan. Inflamm Intest Dis 2024; 9:103-114. [PMID: 38681186 PMCID: PMC11052562 DOI: 10.1159/000538007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/08/2023] [Accepted: 02/21/2024] [Indexed: 05/01/2024] Open
Abstract
Introduction Currently, no self-care measurement tool specific to inflammatory bowel disease (IBD) exists in Japan. The Instrument for Diabetes Self-care Agency (IDSCA) is a reliable and valid self-care measurement tool for patients with diabetes. Factors affecting self-care ability assessed by IDSCA appear to meet the requirements for patients with IBD. Therefore, we created a self-care ability measurement tool adapted from IDSCA as an original draft for the Instrument for IBD Self-care Agency and extracted factors and items required to measure the self-care ability of patients with IBD. Methods An anonymous questionnaire survey was distributed among 226 patients. Exploratory factor analysis examined the relationship of factors from multiple perspectives, identified factors based on their content, and confirmed their internal consistency. Statistical analyses were performed using JMP® 14.0.0. Results Five factors with 23 items were extracted from the IDSCA, including ability to build a human support system, ability to acquire knowledge, ability to maintain self-care, ability to self-manage, and ability to self-assess. Cronbach's alpha was 0.765-0.861 for each factor and 0.904 for the entire scale. Conclusion We could identify the self-care agencies of patients with IBD, including 5 factors and 23 items. Focusing on these self-care factors may provide critical information to guide nurses' self-care interventions.
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Affiliation(s)
- Hikaru Mizuno
- Kansai Medical University, Faculty of Nursing and Graduate School of Nursing, Osaka, Japan
- Kinshukai Infusion Clinic, Osaka, Japan
| | - Mayu Katashima
- Kansai Medical University, Faculty of Nursing and Graduate School of Nursing, Osaka, Japan
| | | | - Yu Fujimoto
- Kansai Medical University, Faculty of Nursing and Graduate School of Nursing, Osaka, Japan
| | - Chiyo Murauchi
- Kansai Medical University, Faculty of Nursing and Graduate School of Nursing, Osaka, Japan
| | - Natsuko Seto
- Kansai Medical University, Faculty of Nursing and Graduate School of Nursing, Osaka, Japan
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Jannati N, Salehinejad S, Kuenzig ME, Peña-Sánchez JN. Review and content analysis of mobile apps for inflammatory bowel disease management using the mobile application rating scale (MARS): Systematic search in app stores. Int J Med Inform 2023; 180:105249. [PMID: 37857167 DOI: 10.1016/j.ijmedinf.2023.105249] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/21/2023] [Revised: 09/30/2023] [Accepted: 10/09/2023] [Indexed: 10/21/2023]
Abstract
BACKGROUND People with inflammatory bowel disease (IBD) need tools for self-management of their disease with the ultimate goal of improving medication adherence and health outcomes. Mobile apps represent a novel opportunity to provide self-management for patients with IBD. Many mobile apps have been developed for IBD self-management, but more evidence is needed about the quality of these mobile apps. OBJECTIVE This study evaluated mobile apps developed for the IBD community and rated the quality of these apps to provide a roadmap for future development. MATERIALS AND METHODS The Apple App Store and Google Play Store were systematically searched to identify IBD mobile apps for patients and physicians based on the IBD-related keywords. We included mobile apps that focus on IBD, are in the English language, and are free. The related app quality was evaluated independently by two reviewers using the Mobile Application Rating Scale (MARS). RESULTS We identified 401 mobile apps. After removing duplicates and unrelated apps, 44 apps were included in the review. Overall, the mean MARS scores were 3.5 (SD = 0.5) on a scale from 1.00 to 5.00, which was the acceptable range.; 12 apps got scores ≥ 4.00. The highest mean domain score belonged to the functionality dimension (mean = 3.9, SD = 0.6) and the lowest belonged to the engagement dimension (mean = 3.2, SD = 0.8). CONCLUSION The MARS ratings showed that the IBD mobile apps quality meet acceptable criteria. However, more attention must be paid to design features that improve user interest and engagement, especially among children and adolescents. Healthcare professional involvement is crucial for designing mobile health apps.
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Affiliation(s)
- Nazanin Jannati
- Department of Community Health & Epidemiology, College of Medicine, University Saskatchewan, Saskatoon, Canada.
| | - Simin Salehinejad
- Health in Disasters and Emergencies Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran.
| | - M Ellen Kuenzig
- Child Health Evaluative Sciences, SickKids Research Institute, Toronto, Canada; SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, Toronto, Canada.
| | - Juan Nicolás Peña-Sánchez
- Department of Community Health & Epidemiology, College of Medicine, University Saskatchewan, Saskatoon, Canada.
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13
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Shao XX, Fang LY, Guo XR, Wang WZ, Shi RX, Lin DP. Knowledge, attitude, and practice of patients living with inflammatory bowel disease: A cross-sectional study. World J Gastroenterol 2023; 29:5818-5833. [PMID: 38074915 PMCID: PMC10701310 DOI: 10.3748/wjg.v29.i43.5818] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/14/2023] [Revised: 10/20/2023] [Accepted: 11/14/2023] [Indexed: 11/20/2023] Open
Abstract
BACKGROUND Patients with inflammatory bowel diseases (IBDs) generally have poor knowledge, attitude, and practice of their disease, while the data from China are lacking. AIM To address this knowledge disparity among Chinese patients with IBD. METHODS This web-based, cross-sectional study was conducted on a cohort of IBD patients who visited the Second Affiliated Hospital of Wenzhou Medical University between December 2022 and February 2023. Their socio-demographic information and the knowledge, attitude, and practice scores were collected and estimated using a self-designed questionnaire. Pearson's correlation analysis was used to determine the pairwise correlations among knowledge, attitude, and practice scores. A multivariate logistic regression analysis was further performed to determine the independent factors associated with their knowledge, attitude, and practice scores. RESULTS A total of 353 patients (224 males) with IBD completed the questionnaires. The mean knowledge, attitude, and practice scores were 10.05 ± 3.46 (possible range: 0-14), 41.58 ± 5.23 (possible range: 0-56), 44.20 ± 7.39 (possible range: 0-56), respectively, indicating good knowledge, positive attitude, and proactive practice toward IBD. Pearson's correlation analysis showed that the knowledge score had significant positive correlations with the attitude score (r = 0.371, P < 0.001) and practice score (r = 0.100, P < 0.001). The attitude score had a significant positive correlation with the practice score (r = 0.452, P < 0.001). Moreover, multivariate logistic regression analysis showed that aged 30-40 years [odds ratio (OR) = 4.06, 95% confidence interval (CI): 1.04-15.82, P = 0.043], middle school education (OR = 3.98, 95%CI: 1.29-12.33, P = 0.017), high school/technical secondary school education (OR = 14.06, 95%CI: 3.92-50.38, P < 0.001), and junior college/bachelor's degree and above education (OR = 15.20, 95%CI: 4.15-55.650, P < 0.001) were independently associated with good knowledge. The higher knowledge score was independently associated with a positive attitude (OR = 1.23, 95%CI: 1.11-1.36, P < 0.001). The higher attitude score was independently associated with proactive practice (OR = 1.20, 95%CI: 1.11-1.30, P < 0.001). CONCLUSION Chinese patients with IBD might have good knowledge, a positive attitude, and proactive practice toward their disease. However, a small number of specific items require education.
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Affiliation(s)
- Xiao-Xiao Shao
- Department of Gastroenterology, The Second Affiliated Hospital and Yuying Children’s Hospital of Wenzhou Medical University, Wenzhou 325027, Zhejiang Province, China
| | - Lu-Yan Fang
- Department of Gastroenterology, The Second Affiliated Hospital and Yuying Children’s Hospital of Wenzhou Medical University, Wenzhou 325027, Zhejiang Province, China
| | - Xu-Ri Guo
- Department of Gastroenterology, The Second Affiliated Hospital and Yuying Children’s Hospital of Wenzhou Medical University, Wenzhou 325027, Zhejiang Province, China
| | - Wei-Zhong Wang
- The Second Clinical Medical College, Wenzhou Medical University, Wenzhou 325035, Zhejiang Province, China
| | - Rui-Xin Shi
- The Second Clinical Medical College, Wenzhou Medical University, Wenzhou 325035, Zhejiang Province, China
| | - Dao-Po Lin
- Department of Gastroenterology, The Second Affiliated Hospital and Yuying Children’s Hospital of Wenzhou Medical University, Wenzhou 325027, Zhejiang Province, China
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14
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Fishman LN, Ding J. Optimizing the Transition and Transfer of Care in Pediatric Inflammatory Bowel Disease. Gastroenterol Clin North Am 2023; 52:629-644. [PMID: 37543405 DOI: 10.1016/j.gtc.2023.05.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/07/2023]
Abstract
Health care transition from pediatric to adult care has been identified as a priority in the field of medicine, especially for those with chronic illnesses such as inflammatory bowel disease (IBD). Although there is no universally accepted model of preparing the pediatric patient for transfer to adult care, transition care is best accomplished in a structured and consistent manner. The authors highlight concepts for optimizing the transition of care for patients with IBD, which include setting expectations throughout adolescence with the gradual nurturing of self-management skills, preparing and assessing of readiness for transfer, and enacting a successful transfer to adult care.
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Affiliation(s)
- Laurie N Fishman
- Division of Gastroenterology and Nutrition, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, USA; Harvard Medical School, 25 Shattuck Street, Boston, MA 02115, USA.
| | - Julia Ding
- Division of Gastroenterology and Hepatology, Boston University School of Medicine, 72 East Concord Street, Boston, MA 02118, USA
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15
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Nagahori M, Imai T, Nakashoji M, Tairaka A, Fernandez JL. A web-based survey on self-management for patients with inflammatory bowel disease in Japan. PLoS One 2023; 18:e0287618. [PMID: 37459302 PMCID: PMC10351702 DOI: 10.1371/journal.pone.0287618] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/17/2023] [Accepted: 06/08/2023] [Indexed: 07/20/2023] Open
Abstract
BACKGROUND/AIMS Self-management (SMN) is a recognized component of care for chronic conditions, yet its importance in the context of inflammatory bowel disease (IBD) is unclear. This study evaluates the status of SMN and its relationship with quality of life (QOL) in Japanese patients with IBD. METHODS A web-based survey was conducted among adult (≥20 years old) Japanese patients with ulcerative colitis (UC) or Crohn's disease (CD). Registered members of an online IBD information platform completed a 45-item survey covering demographics, diet, treatment, physical condition, stress management, financial concerns, support services, and QOL. SMN was operationally defined by dietary and lifestyle behaviours, and contingency analysis was used to test for associated factors. Individual-level contributions to SMN were identified with logistic regression. RESULTS There were 372 responses to the survey (211 with UC, 161 with CD). Approximately 60% of participants practiced SMN and these patients were 4-24% more likely to report positive QOL than those who did not. SMN was more common in patients with CD than those with UC. SMN practice was also associated with IBD-related hospitalisation/surgery and consultation with others about IBD (e.g. physicians, nurses, patients). CONCLUSIONS The results of this study suggest an association between the practice of SMN and positive QOL in patients with IBD in Japan.
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Affiliation(s)
- Masakazu Nagahori
- Department of Gastroenterology and Hepatology, Tokyo Medical and Dental University, Tokyo, Japan
| | - Takahito Imai
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, 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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16
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Noser AE, Lancaster BD, Hommel KA, Roberts CM, King JA, Alt E, Fredericks EM, Ramsey RR. Use of Behavior Change Techniques and Quality of Commercially Available Inflammatory Bowel Disease Apps. Dig Dis Sci 2023; 68:2908-2920. [PMID: 36933116 PMCID: PMC11605699 DOI: 10.1007/s10620-023-07884-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/01/2022] [Accepted: 02/15/2023] [Indexed: 03/19/2023]
Abstract
BACKGROUND Inclusion of evidence-based behavior change techniques (e.g., self-monitoring) in mobile health apps has the potential to promote adherence to inflammatory bowel disease treatment. While inflammatory bowel disease management apps exist, the extent to which they incorporate behavior change techniques remains unknown. AIMS The present study systematically evaluated the content and quality of free, commercially available inflammatory bowel disease management apps. METHODS Apps were identified using a systematic search of the Apple App and Google Play stores. Apps were evaluated using Abraham and Michie's taxonomy of 26 behavior change techniques. A literature search was conducted to identify behavior change techniques specific and relevant for people with inflammatory bowel disease. App quality was assessed using the Mobile App Rating Scale with scores ranging from 1 (Inadequate) to 5 (Excellent). RESULTS A total of 51 inflammatory bowel disease management apps were evaluated. Apps included 0-16 behavior change techniques (Mean = 4.55) and 0-10 inflammatory bowel disease management behavior change techniques (Mean = 3.43). App quality ranged from 2.03 to 4.62 (Mean = 3.39) out of 5.00. Two apps, My IBD Care: Crohn's & Colitis and MyGiHealth GI Symptom Tracker, included the highest number of overall and inflammatory bowel disease management behavior change techniques along with high-quality scores. Bezzy IBD was the only app with a high number of overall and inflammatory bowel disease management behavior change techniques with a primary focus on social support/change. CONCLUSION Most inflammatory bowel disease management apps reviewed included evidence-based inflammatory bowel disease management behavior change techniques.
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Affiliation(s)
- Amy E Noser
- Department of Family Medicine and Community Health, University of Minnesota Medical School, 717 Delaware Street SE, Minneapolis, MN, 55414, USA.
| | - Brittany D Lancaster
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Kevin A Hommel
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
| | - Caroline M Roberts
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Jessica A King
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Elizabeth Alt
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | | | - Rachelle R Ramsey
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
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17
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Sheehan JL, Greene-Higgs L, Swanson L, Higgins PD, Krein SL, Waljee AK, Saini SD, Berinstein JA, Mellinger JL, Piette JD, Resnicow K, Cohen-Mekelburg S. Self-Efficacy and the Impact of Inflammatory Bowel Disease on Patients' Daily Lives. Clin Transl Gastroenterol 2023; 14:e00577. [PMID: 36881812 PMCID: PMC10299768 DOI: 10.14309/ctg.0000000000000577] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/27/2022] [Accepted: 02/24/2023] [Indexed: 03/09/2023] Open
Abstract
INTRODUCTION Self-efficacy, i.e., the confidence in one's capacity to perform a behavior, is crucial to the development of inflammatory bowel disease (IBD) self-management skills. We aimed to measure IBD self-efficacy and the relationship between self-efficacy and the patient-reported impact of IBD on daily life. METHODS We surveyed patients with IBD from a single academic center using the IBD Self-Efficacy Scale (IBD-SES) and patient-reported outcome (PRO) measures. The IBD-SES assesses 4 IBD domains: patients' confidence in managing stress and emotions, symptoms and disease, medical care, and remission. IBD PROs evaluate daily life impact, coping strategies, emotional impact, and systemic symptoms. We examined the association between IBD-SES domains with the lowest scores and IBD daily life impact. RESULTS A total of 160 patients completed the survey. Domain scores on the IBD-SES were lowest for managing stress and emotions (mean 6.76, SD 1.86) and symptoms and disease (mean 6.71, SD 2.12) on a 1-10 scale. Controlling for age, sex, IBD type, disease activity, moderate-to-severe disease, depression and anxiety, a higher confidence in managing stress and emotions (β -0.12, 95% confidence interval -0.20 to -0.05, P = 0.001), and managing symptoms and disease (β -0.28, 95% confidence interval -0.35 to -0.20, P < 0.001) were each associated with lower IBD daily life impact. DISCUSSION Patients with IBD report low confidence in managing stress and emotion and managing symptoms and disease. Higher self-efficacy in these domains was associated with lower IBD daily life impact. Self-management tools that promote self-efficacy in managing these domains have the potential to reduce IBD's daily life impact.
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Affiliation(s)
- Jessica L. Sheehan
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
| | - LaVana Greene-Higgs
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
| | - Linnea Swanson
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
| | - Peter D.R. Higgins
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
| | - Sarah L. Krein
- Department of Internal Medicine, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Akbar K. Waljee
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Sameer D. Saini
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Jeffrey A. Berinstein
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
| | - Jessica L. Mellinger
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
- Department of Psychiatry, Michigan Medicine, Ann Arbor, Michigan, USA
| | - John D. Piette
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- University of Michigan School of Public Health, Department of Health Behavior and Health Education, Ann Arbor, Michigan, USA
| | - Ken Resnicow
- University of Michigan School of Public Health, Department of Health Behavior and Health Education, Ann Arbor, Michigan, USA
| | - Shirley Cohen-Mekelburg
- Department of Internal Medicine, Division of Gastroenterology and Hepatology, Michigan Medicine, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, VA Ann Arbor Health Care System, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
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Rohatinsky N, Cave J, Fowler S, Risling T, Peña-Sánchez JN. An Exploratory Study of Health-related Quality of Life and Care Experiences in Older Adults with Inflammatory Bowel Disease. J Can Assoc Gastroenterol 2023; 6:116-124. [PMID: 37273969 PMCID: PMC10235589 DOI: 10.1093/jcag/gwac039] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 08/11/2023] Open
Abstract
Canada has one of the highest rates of inflammatory bowel disease (IBD), with older adults as the fastest-growing group of individuals affected. This exploratory mixed methods study aimed to understand perceived health-related quality of life and care experiences in older adults with IBD. Participants greater than 60 years of age, who were diagnosed with IBD, and who lived in Saskatchewan, Canada were invited to participate in both an online survey and telephone interview. Seventy-three respondents completed the survey, and 18 participants were interviewed. Most individuals were diagnosed before age 60, believed their IBD was well controlled, believed their current treatment was useful, and were satisfied with their care. Individuals also reported a moderate health-related quality of life. However, collaborative management of IBD care between providers and older adults with IBD was identified as an area with room for improvement. Strategies to enhance disease self-management and engaged chronic illness care are critical.
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Affiliation(s)
- Noelle Rohatinsky
- Correspondence: Noelle Rohatinsky, PhD, RN, College of Nursing, University of Saskatchewan, 4342-104 Clinic Place, Saskatoon, Saskatchewan S7N 2E5, Canada, e-mail:
| | - Janelle Cave
- College of Nursing, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
| | - Sharyle Fowler
- College of Medicine, Gastroenterology and Hepatology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
| | - Tracie Risling
- Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada
| | - Juan Nicolás Peña-Sánchez
- College of Medicine, Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
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Muñoz González E, Durantez-Fernández C, Pérez-Pérez L, de Dios-Duarte MJ. Influence of Coping and Self-Efficacy in Inflammatory Bowel Disease. Healthcare (Basel) 2023; 11:healthcare11081113. [PMID: 37107947 PMCID: PMC10138294 DOI: 10.3390/healthcare11081113] [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: 02/01/2023] [Revised: 04/10/2023] [Accepted: 04/11/2023] [Indexed: 04/29/2023] Open
Abstract
(1) Background: Coping includes the specific cognitive processes and behaviours that the patient uses when faced with the stress of living with a chronic disease. Self-efficacy is the knowledge that individuals have about their abilities and their confidence to face a problem or cope with a situation (disease). The aim of this study was to explore the role of coping and self-efficacy in inflammatory bowel disease. (2) Materials and Methods: A total of 92 participants were included (33 had been diagnosed with Crohn's disease, 23 with ulcerative colitis and 36 were healthy participants). The Coping Strategies Inventory was used to measure which coping strategies were employed, differentiating them as active or passive. The General Self-Efficacy Scale was used to measure self-efficacy. (3) Results: The results indicate that people with inflammatory bowel disease used strategies related to passive coping more than healthy people (mean of 36.39 ± 13.92 vs. 29.77 ± 10.70, p = 0.017). Additionally, people with inflammatory bowel disease used social withdrawal more than healthy participants (mean of 8.30 ± 5.07 vs. 4.47 ± 4.17, p < 0.001). In addition, there are significant differences in emotion-focused engagement coping strategies. People with inflammatory bowel disease used this strategy less than healthy people (mean of 21.77 ± 7.75 vs. 25.03 ± 7.00, p = 0.044). Finally, healthy participants used the emotion-focused disengagement strategy less than those diagnosed with inflammatory bowel disease (mean of 9.81 ± 7.74 vs. 15.61 ± 10.14, p = 0.004). (4) Conclusions: Actions aimed at the development of active coping strategies and patient socialisation must be included in the treatment of inflammatory bowel disease.
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Affiliation(s)
| | | | - Lucía Pérez-Pérez
- Nursing Department, Faculty of Nursing, University of Valladolid, 47005 Valladolid, Spain
- Castilla y León Health Service (SACYL), 47007 Valladolid, Spain
- Nursing Care Research (GICE), University of Valladolid, 47005 Valladolid, Spain
| | - María José de Dios-Duarte
- Nursing Department, Faculty of Nursing, University of Valladolid, 47005 Valladolid, Spain
- Nursing Care Research (GICE), University of Valladolid, 47005 Valladolid, Spain
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20
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Pollock MD, Brotkin SM, Denio E, Dave S, Fisher EB, Docherty SL, Maslow GR. Clinical Application of a Peer Coaching Intervention to Enhance Self-Management for Adolescents and Young Adults With Inflammatory Bowel Disease. CLINICAL PRACTICE IN PEDIATRIC PSYCHOLOGY 2022; 10:409-427. [PMID: 37701558 PMCID: PMC10497228 DOI: 10.1037/cpp0000468] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/14/2023]
Abstract
Objective The purpose of this article is to characterize the current evidence base related to peer support interventions for adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) and to describe a peer support program to enhance self-management for AYAs with IBD through a case study. There is strong theory and compelling evidence suggesting that AYAs with IBD could benefit from and are interested in receiving peer support to enhance self-management; however, literature on peer support interventions for AYAs with IBD is lacking. Methods This study (a) presents a topical review describing qualitative factors AYAs with IBD would seek in a peer support program as well as existing peer support programs for this population, (b) presents an innovative one-to-one peer support program targeting self-management through a case study, and (c) discusses clinical implications and directions for future research. Results Peer support offers a promising approach for AYAs with IBD that is feasible and acceptable to patient populations. However, results from the present topical review identified only two studies that examined peer support interventions for AYAs with IBD. The case study demonstrates how a theoretically driven program uses peer support to promote self-management and adaptive behavioral change. Conclusions The paucity of literature in this area reveals a critical opportunity for future research and clinical programming to improve existing practices by leveraging peer support. We present the application of an innovative mobile-based peer coaching intervention that has the potential to support AYAs with IBD in their self-management.
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Affiliation(s)
- McLean D. Pollock
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
| | | | - Erin Denio
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
| | - Sneha Dave
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
| | - Edwin B. Fisher
- Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill
| | | | - Gary R. Maslow
- Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine
- Department of Pediatrics, Duke University School of Medicine
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21
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Tanaka M, Kawakami A, Sakagami K, Terai T, Fernandez J, Keefer L, Ito H. Development and Validation of a Japanese Version of the Inflammatory Bowel Disease Self-efficacy Scale and Cross-culture Study in Japan and the United States. Inflamm Bowel Dis 2022:6723730. [PMID: 36165952 PMCID: PMC10393207 DOI: 10.1093/ibd/izac196] [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: 07/08/2022] [Indexed: 12/09/2022]
Abstract
BACKGROUND Self-efficacy is an important health outcome for patients with inflammatory bowel disease (IBD). We aimed to develop a Japanese version of the IBD-Self-Efficacy Scale (IBD-SES.J) and compare characteristics of self-efficacy of IBD patients with previously reported results from patients in the United States. METHODS We conducted a questionnaire survey of patients with IBD from a specialized IBD clinic and respondents recruited online. Self-efficacy of patients in Japan and the United States were compared by Student t test and Cohen d coefficient to gauge effect size. RESULTS A total of 919 valid responses were obtained: 482 patients from the specialized IBD clinic and 437 patients from the online survey. Significant differences (P < .01) were observed in the following 3 subscales: "managing stress and emotions," "managing symptoms and disease," and "maintaining remission" when comparing remission and active periods; and known-group validity was mostly confirmed. Cronbach's alpha coefficients of each subscale ranged between 0.85 and 0.94. Intraclass correlation coefficients (95% confidence intervals [CIs]) to assess test-retest reliability of each item were between 0.56 (95% CI, 0.47-0.64) and 0.78 (95% CI, 0.73-0.82). Self-efficacy scores for most items in Japanese patients with IBD were lower compared with patients in the United States, with moderate effect size (Cohen d > 0.5), especially in the subscale "managing stress and emotions." CONCLUSIONS The study demonstrates the reliability and validity of the IBD-SESJ. Self-efficacy scores for most items in Japanese patients were lower than those of patients in the United States. Further investigation is required to understand cross-cultural score differences.
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Affiliation(s)
- Makoto Tanaka
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | - Aki Kawakami
- Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | | | - Tomoko Terai
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan
| | - Jovelle Fernandez
- Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan.,Jovelle Fernandez L.L.C., Delaware, USA
| | - Laurie Keefer
- Icahn School of Medicine at Mount Sinai, New York, USA
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22
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van Erp LW, Neijenhuis MK, Heida W, Derwig J, Geleijns CE, Groenen MJM, Wahab PJ. Improving Care for Recently Diagnosed Inflammatory Bowel Disease Patients: Lessons Learned From a Patient-Centred, Mixed-Method Study. J Crohns Colitis 2022; 16:737-745. [PMID: 34758088 DOI: 10.1093/ecco-jcc/jjab196] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/08/2023]
Abstract
BACKGROUND AND AIMS Newly diagnosed inflammatory bowel disease [IBD] patients need to deal with the physical and emotional impact of the disease. We aimed to evaluate care for recently diagnosed IBD patients from the patient perspective and assess themes for improvement. METHODS A mixed-method study with adult IBD patients 4-15 months after diagnosis was performed. First, relevant themes were identified through semi-structured interviews until data saturation. Next, a questionnaire assessing satisfaction with care [SATI-Q] was developed and validated with 15 items divided into two domains: medical care and information and psychosocial care. Higher scores indicate higher patient satisfaction [0-100]. RESULTS We interviewed 20 patients. Next, 84/107 patients completed the SATI-Q: 51% female, aged 37 years (interquartile range [IQR 25-58]), 36% Crohn's disease, disease duration 9 months [IQR 6-12] and 74% in clinical remission. The median SATI-Q score was 82 [IQR 72-92]. Patients were more satisfied with medical care than with information and psychosocial care (score 92 [IQR 81-98] vs 74 [IQR 60-90], p < 0.001). Patients were least satisfied with the attention given to IBD-related emotions and information on IBD medication, diet and future perspectives [77, 76, 57 and 54% of patients satisfied]. Patients [81%] preferred spoken information. Only 26-27% preferred brochures and websites. CONCLUSIONS In this study, the SATI-Q questionnaire was developed and validated to assess patient satisfaction with care in early IBD. Our findings suggest that psychosocial care and information on IBD medication, diet influence and future perspectives for recently diagnosed IBD patients require improvement.
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Affiliation(s)
- Liselot W van Erp
- Crohn & Colitis Centre, Department of Gastroenterology and Hepatology, Rijnstate Hospital, Arnhem, the Netherlands
| | - Myrte K Neijenhuis
- Crohn & Colitis Centre, Department of Gastroenterology and Hepatology, Rijnstate Hospital, Arnhem, the Netherlands
| | - Wendy Heida
- Crohn & Colitis Centre, Department of Gastroenterology and Hepatology, Rijnstate Hospital, Arnhem, the Netherlands
| | - Joost Derwig
- Department of Medical Psychology, Rijnstate Hospital, Arnhem, the Netherlands
| | - Caroline E Geleijns
- Department of Medical Psychology, Rijnstate Hospital, Arnhem, the Netherlands
| | - Marcel J M Groenen
- Crohn & Colitis Centre, Department of Gastroenterology and Hepatology, Rijnstate Hospital, Arnhem, the Netherlands
| | - Peter J Wahab
- Crohn & Colitis Centre, Department of Gastroenterology and Hepatology, Rijnstate Hospital, Arnhem, the Netherlands
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23
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Yang YX, Zhang L, Zhao YY, Hao N, Wang BB, Lin YP. Self-efficacy of patients with inflammatory bowel disease: A review. Shijie Huaren Xiaohua Zazhi 2022; 30:425-430. [DOI: 10.11569/wcjd.v30.i10.425] [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: 02/06/2023] Open
Abstract
Inflammatory bowel disease (IBD) is a chronic, recurrent, and incurable intestinal disease, which is easy to bring heavy physical and mental damage to patients, and self-efficacy is an important factor affecting physical and mental health. This article reviews the self-efficacy of patients with IBD, focusing on the measurement tools, influencing factors, influence on patients, and improvement measures, in order to provide reference for related research in the future.
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Affiliation(s)
- Ya-Xin Yang
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Li Zhang
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Yue-Yue Zhao
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Na Hao
- Department of Gastroenterology, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Bin-Bin Wang
- Department of Gastroenterology, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
| | - Yu-Peng Lin
- Nursing Department, The Second Affiliated Hospital of Zhengzhou University, Zhengzhou 450014, Henan Province, China
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24
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Plevinsky JM, Maddux MH, Fishman LN, Kahn SA, Greenley RN. Perceived effect of pediatric inflammatory bowel diseases on academics, college planning, and college adjustment. JOURNAL OF AMERICAN COLLEGE HEALTH : J OF ACH 2022; 70:940-947. [PMID: 32643555 DOI: 10.1080/07448481.2020.1781869] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/18/2019] [Revised: 03/30/2020] [Accepted: 06/07/2020] [Indexed: 06/11/2023]
Abstract
ObjectiveTo examine the relationship between perceived effect of inflammatory bowel diseases (IBD) on high school academics and college planning on college adjustment. Participants: Participants (N = 97) were college students with IBD. Methods: Participants completed an online survey including the Student Adaptation to College Questionnaire and study-developed questions assessing the perceived impact of their diagnosis on their high school academics and college planning. Results: Most participants reported average college adjustment across domains, except personal-emotional adjustment with 47% of participants falling within the very low to low ranges. Nearly half reported IBD impacted their choice of college (49%). The impact of IBD on college planning was most consistently associated with domains of college adjustment. Conclusions: IBD severely impacts college planning, decision-making, and adjustment in college-bound youth. Perceiving that having a chronic illness impacts college planning may result in greater difficulty with academic adjustment, attachment to the institution, and social adjustment during college.
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Affiliation(s)
- Jill M Plevinsky
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
| | - Michele H Maddux
- Department of Developmental and Behavioral Health, Children's Mercy Kansas City, Kansas City, Missouri, USA
| | - Laurie N Fishman
- Division of Gastroenterology, Hepatology, and Nutrition, Boston Children's Hospital, Boston, Massachusetts, USA
| | - Stacy A Kahn
- Division of Gastroenterology, Hepatology, and Nutrition, Boston Children's Hospital, Boston, Massachusetts, USA
| | - Rachel N Greenley
- Department of Clinical Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, Illinois, USA
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25
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Mohsenizadeh SM, Manzari ZS, Vossoughinia H, Ebrahimipour H. Reconstruction of individual, social, and professional life: Self-management experience of patients with inflammatory bowel disease. JOURNAL OF EDUCATION AND HEALTH PROMOTION 2021; 10:410. [PMID: 35071616 PMCID: PMC8719574 DOI: 10.4103/jehp.jehp_1543_20] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 12/05/2020] [Accepted: 01/28/2021] [Indexed: 11/28/2022]
Abstract
BACKGROUND Patients with inflammatory bowel disease (IBD) experience wide range of physical and psychological problems experience. The use of strategies to improve disease management by patients is of has special importance in solving these problems. The aim of present study was to discover the strategies and behaviors of patients to manage their disease. MATERIALS AND METHODS The present study was conducted with a qualitative research approach and a qualitative content analysis method. The research participants included 20 patients with IBD referred to gastrointestinal wards in 2020 in Mashhad. Data were collected through unstructured interviews and purposeful sampling method and continued until data saturation. Data analysis was performed continuously and simultaneously with data collection and comparatively. RESULTS Data analysis provided five themes of "Improving self-efficacy and problem-solving skills," "Coexistence with disease," "Reviewing and modifying of interactions," "Adjusting job and professional conditions" and "Commitment to self-care." The combination of these concepts indicated that is the main theme in disease management for these patients. CONCLUSIONS Reconstruction of individual, social, and professional life can improve self-regulation and problem-solving skills in these patients and make them a sense of control on their lives and disease.
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Affiliation(s)
- Seyed Mostafa Mohsenizadeh
- Department of Medical Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Zahra Sadat Manzari
- Department of Medical-Surgical Nursing, Nursing and Midwifery Care Research Center, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Hassan Vossoughinia
- Department of Gastroenterology and Hepatology, Ghaem Hospital, Mashhad University of Medicine Science, Mashhad, Iran
| | - Hossein Ebrahimipour
- Department of Health Sciences, Social Determinants of Health Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
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26
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Keikavousi MR, Asadi F, Paydar S, Khounraz F. Development of Inflammatory Bowel Diseases Registry Software. Middle East J Dig Dis 2021; 13:145-152. [PMID: 34712453 PMCID: PMC8531921 DOI: 10.34172/mejdd.2021.218] [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: 08/15/2020] [Accepted: 01/11/2021] [Indexed: 11/09/2022] Open
Abstract
BACKGROUND With an increase in the prevalence and incidence of inflammatory bowel diseases (IBDs), they have become a global challenge. The IBD registry provides complete and timely data, thereby greatly contributing to the estimation of the burden of these diseases and development of control and prevention programs. We aimed to develop an IBD registry software. METHODS The present applied-developmental study had two main stages: determining user requirements, and developing the IBD registry software. The software was created using a Web-based software development technology called ASP.NET Core 2. The programming language in this framework was C#, and the SQL Server 2017 was employed to create a strong and integrated software databank in the relational form. RESULTS When determining user requirements, the data elements were classified into two main categories of patient information and visits and tests. Moreover, in this stage, registry functions, including case ascertainment, abstracting, follow-up, quality control, and reporting were identified. In the registry software development stage, the object-oriented conceptual model was designed with five use case diagrams and 59 classes. The user interface comprised the following main sections: add patient, find patient, complete source report, report, staff, and drugs. Precise user authentication and authorization were also employed to enhance the security of the developed software. CONCLUSION Development of an IBD registry which can precisely record patients and estimate the incidence, prevalence, and socioeconomic burden of these diseases can assist in planning for the control and prevention of IBD in healthcare systems.
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Affiliation(s)
- Mohammad Reza Keikavousi
- MSc in Medical Informatics, Department of Health Information Technology and Management, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran
| | - Farkhondeh Asadi
- Associate Professor in Health Information Management, Department of Health Information Technology and Management, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran
| | - Somayeh Paydar
- Assistant Professor in Health Information Management, Department of Health Information Technology, School of paramedical, Kermanshah University of Medical Sciences, Kermanshah, Iran
| | - Fariba Khounraz
- MSc in Medical Informatics, Department of Health Information Technology and Management, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran
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27
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Hawkins M, Massuger W, Cheng C, Batterham R, Moore GT, Knowles S, Nadarajah RG, Raven L, Osborne RH. Codesign and implementation of an equity-promoting national health literacy programme for people living with inflammatory bowel disease (IBD): a protocol for the application of the Optimising Health Literacy and Access (Ophelia) process. BMJ Open 2021; 11:e045059. [PMID: 34446478 PMCID: PMC8395357 DOI: 10.1136/bmjopen-2020-045059] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/30/2022] Open
Abstract
INTRODUCTION Non-government organisations (NGOs) often represent people who are underserved or experiencing vulnerability. Crohn's & Colitis Australia (CCA) is aware that many Australians with inflammatory bowel disease (IBD) are not reached by current communication and engagement activities. The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers. METHODS AND ANALYSIS Health literacy and other data for phase 1 will be collected using the Health Literacy Questionnaire, eHealth Literacy Questionnaire, IBD-related questions and qualitative interviews with people with IBD and their carers to ascertain their lived experience. Quantitative data will be analysed using descriptive statistics and cluster analysis. Identified clusters will be combined with qualitative data to develop vignettes (narratives of people's experiences of living with IBD) for stakeholder workshops to generate ideas for useful, accessible and sustainable solutions for identified health literacy needs. Selection and testing of health literacy actions happens in phase 2 and implementation and evaluation in phase 3 (2021-2023). Outcomes of this project include giving voice to people living with IBD, their carers and frontline healthcare practitioners. Genuine codesign informs the development and implementation of what is needed and wanted to improve access to and availability and quality of information and resources that support people to manage their health. There is potential for other NGOs to use the CCA Ophelia model in other health contexts to improve engagement with and understanding of the needs of the people they serve and to reduce health inequalities and improve health outcomes. ETHICS AND DISSEMINATION Ethics approval for Ophelia phase 1 has been obtained from the Human Research Ethics Committee of Swinburne University of Technology (Ref: 20202968-4652) and by the South West Sydney Local Health District Research and Ethics Office for the purposes of questionnaire recruitment at Liverpool Hospital (Ref: 20202968-4652). Dissemination of the study findings will be the national codesign process and ownership development across the CCA community and through the genuine engagement of clinicians and relevant managers across Australia. The model and process will be directly distributed to international IBD associations and to other NGOs. It will also be disseminated through publication in a peer-reviewed journal, conference presentations and public reports on the CCA and Swinburne University of Technology website.
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Affiliation(s)
- Melanie Hawkins
- Centre for Global Health and Equity, School of Health Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia
| | - Wayne Massuger
- Crohn's and Colitis Australia, Camberwell, Victoria, Australia
| | - Christina Cheng
- Centre for Global Health and Equity, School of Health Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia
| | - Roy Batterham
- Faculty of Public Health, Thammasat University - Rangsit Campus, Khlong Nueng, Pathum Thani, Thailand
| | - Gregory T Moore
- Gastroenterology and Hepatology Unit, Monash Health, Clayton, Victoria, Australia
- Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia
| | - Simon Knowles
- Department of Psychological Sciences and Statistics, Swinburne University of Technology, Hawthorn, Victoria, Australia
| | - Ranjit G Nadarajah
- Centre for Global Health and Equity, School of Health Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia
| | - Leanne Raven
- Crohn's and Colitis Australia, Camberwell, Victoria, Australia
| | - Richard H Osborne
- Centre for Global Health and Equity, School of Health Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia
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28
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Rohde JA, Barker JO, Noar SM. Impact of eHealth technologies on patient outcomes: a meta-analysis of chronic gastrointestinal illness interventions. Transl Behav Med 2021; 11:1-10. [PMID: 31731292 DOI: 10.1093/tbm/ibz166] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/19/2022] Open
Abstract
Gastrointestinal (GI) illness interventions are increasingly utilizing eHealth technologies, yet little is currently known about the extent of their impact on patient outcomes. The purpose of this study was to conduct a meta-analysis of the GI eHealth intervention literature. We used a comprehensive search strategy to locate studies. To be included, studies had to be a randomized controlled trial comparing an eHealth intervention condition against a no-treatment or waitlist control condition. Studies had to report data on at least one of the following patient outcomes: medication adherence, quality of life (QoL), psychological distress, illness-related knowledge, or number of patient visits to the clinic/hospital. Analyses weighted effect sizes (d) by their inverse variance and combined them using random effects meta-analytic procedures. K = 19 studies conducted in eight countries with a cumulative sample size of N = 3,193 were meta-analyzed. Findings indicated that GI eHealth interventions improved patients' QoL (d = .25, p = .008), psychological distress (d = .24, p = .017), medication adherence (d = .17, p = .014), and illness-related knowledge (d = .19, p = .002). GI eHealth interventions also significantly reduced the number of patient visits to the clinic/hospital (d = .78, p = .005). Our findings suggest that eHealth interventions hold promise in improving patient outcomes for those with GI illnesses. We suggest the next generation of GI interventions continue developing and evaluating the impact of technology using randomized controlled trial designs, and perhaps consider adapting existing efficacious interventions for burgeoning platforms, such as smartphones and tablets.
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Affiliation(s)
- Jacob A Rohde
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
| | - Joshua O Barker
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
| | - Seth M Noar
- Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.,Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
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Rogers CC, Moutinho TJ, Liu X, Valdez RS. Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work. JMIR Hum Factors 2021; 8:e27452. [PMID: 34383664 PMCID: PMC8386363 DOI: 10.2196/27452] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/25/2021] [Revised: 03/18/2021] [Accepted: 07/04/2021] [Indexed: 12/11/2022] Open
Abstract
BACKGROUND Diet and nutrition management is an integral component of Crohn disease (CD) management. This type of management is highly variable and individualized and, thus, requires personalized approaches. Consumer health information technology (CHIT) designed to support CD management has typically supported this task as everyday life work and, not necessarily, as illness work. Moreover, CHIT has rarely supported the ways in which diet and nutrition management requires coordination between multiple forms of patient work. OBJECTIVE The purpose of this study was to investigate diet and nutrition management as biform work, identify components of articulation work, and provide guidance on how to design CHIT to support this work. METHODS We performed a qualitative study in which we recruited participants from CD-related Facebook pages and groups. RESULTS Semistructured interviews with 21 individuals showed that diet and nutrition management strategies were highly individualized and variable. Four themes emerged from the data, emphasizing the interactions of diet and nutrition with physical, emotional, information, and technology-enabled management. CONCLUSIONS This study shows that the extent to which diet and nutrition management is biform work fluctuates over time and that articulation work can be continuous and unplanned. The design guidance specifies the need for patient-facing technologies to support interactions among diet and nutrition and other management activities such as medication intake, stress reduction, and information seeking, as well as to respond to the ways in which diet and nutrition management needs change over time.
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Affiliation(s)
- Courtney C Rogers
- Department of Engineering Systems and Environment, University of Virginia, Charlottesville, VA, United States
| | - Thomas J Moutinho
- Department of Biomedical Engineering, University of Virginia, Charlottesville, VA, United States
| | - Xiaoyue Liu
- School of Nursing, University of Virginia, Charlottesville, VA, United States
| | - Rupa S Valdez
- Department of Engineering Systems and Environment, University of Virginia, Charlottesville, VA, United States
- Department of Public Health Sciences, University of Virginia, Charlottesville, VA, United States
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Aluzaite K, Braund R, Seeley L, Amiesimaka OI, Schultz M. Adherence to Inflammatory Bowel Disease Medications in Southern New Zealand. CROHN'S & COLITIS 360 2021; 3:otab056. [PMID: 36776660 PMCID: PMC9802163 DOI: 10.1093/crocol/otab056] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/25/2021] [Indexed: 11/12/2022] Open
Abstract
Background Inflammatory bowel diseases (IBDs) require continuous clinical management; poor medication adherence may result in worse disease outcomes and increased healthcare costs. This study investigated medication adherence and associated risk factors in IBD patients. Methods Otago (New Zealand) IBD patients were mailed questionnaires on demographics, medication-taking behavior, and a validated Probabilistic Medication Adherence Scale (ProMAS). Results The response rate was 29.7% (n = 174/590). The study sample was mean (SD) 50.5 (16.9) years old, 57.9% female, 49.4% had Crohn's disease, and 43.9% ulcerative colitis, with median of 9.5 years (interquartile range: 5.0-22.0) of IBD duration. About 31.1% scored below medium adherence according to ProMAS. About 11.9%, 24.7%, and 23.1% reported failing to renew, purposely not taking, and stopping taking medications, respectively; 27.2% of those who reported having no issues taking medication scored below medium on the ProMAS. Older age was associated with higher ProMAS adherence score (Pearson's r = .25; P = .0014). There were no differences in medication adherence between the types of IBDs (P = .87), disease activity status (P = .70), or gender (P = .27). There was no correlation between the number of medications and level of adherence (Pearson's r = .09; P = .27). About 18.7%, 10.1%, and 5.0% of patients reported forgetting to take medications when traveling, when out of routine, and when busy, respectively. The most used strategies to remember medications included utilizing specific routines (40.1%) and keeping medications in specific locations (21.1%). Conclusions A third of IBD patients had below medium medication adherence. There were discrepancies between self-reported and tool-assessed medication adherence scores with over one-third of patients underestimating/overestimating their adherence.
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Affiliation(s)
- Kristina Aluzaite
- Gastroenterology Research Unit, Department of Medicine, DSM, University of Otago, Dunedin, New Zealand
| | - Rhiannon Braund
- Department of Preventive and Social Medicine, New Zealand Pharmacovigilance Centre, Dunedin School of Medicine, University of Otago, Dunedin, New Zealand
| | - Liam Seeley
- Gastroenterology Research Unit, Department of Medicine, DSM, University of Otago, Dunedin, New Zealand
| | | | - Michael Schultz
- Gastroenterology Research Unit, Department of Medicine, DSM, University of Otago, Dunedin, New Zealand,Gastroenterology Unit, Dunedin Hospital, Southern District Health Board, Dunedin, New Zealand,Address correspondence to: Michael Schultz, MD, PhD, FRACP, Department of Medicine, Dunedin School of Medicine, University of Otago, PO Box 913, Dunedin 9054, New Zealand ()
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Vernon-Roberts A, Rouse E, Gearry RB, Day AS. Systematic Review of Self-Management Assessment Tools for Children With Inflammatory Bowel Disease. JPGN REPORTS 2021; 2:e075. [PMID: 37205965 PMCID: PMC10191491 DOI: 10.1097/pg9.0000000000000075] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/04/2020] [Accepted: 02/24/2021] [Indexed: 05/21/2023]
Abstract
The relapsing pattern of illness and diverse management strategies for children with inflammatory bowel disease (IBD) may inhibit their opportunities to develop self-management skills. Interventions focused on the development of these skills require population-specific outcome measures. We provide a comprehensive overview of self-management skills assessment tools that are available for children with IBD that target processes and behaviors outlined as beneficial for the development of these skills. Seven health literature databases were searched using terms related to self-management, transition, IBD, Crohn's disease, ulcerative colitis, and children. Identified studies underwent a process of title and then full text review. Included studies underwent data extraction using a priori quality assessment criteria related to self-management skills, health literacy, suitability for the target population, validity and reliability testing. The searches identified 523 papers, 123 of which underwent full-text review and 10 included in the final analysis. The assessment tools identified showed great diversity in their development approach, content, methodological rigor, and health literacy considerations. The most frequently included self-management skills were related to adherence, communication, attending clinic, and disease/treatment knowledge. None of the tools satisfied the criteria of selection for use in the target population. While many chronic diseases of childhood follow a predictable disease course with established treatment pathways, IBD presents a unique set of challenges. The development of self-management skills is vital for successful disease management, but these skills should be assessed by a tool appropriate for the population and their diverse needs.
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Affiliation(s)
| | - Emma Rouse
- Department of Medicine, Otago University, Christchurch, New Zealand
| | | | - Andrew S. Day
- From the Department of Paediatrics, Otago University, Christchurch, New Zealand
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32
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Roberts CM, Addante SM, Baudino MN, Edwards CS, Gamwell KL, Jacobs NJ, Tung J, Grunow JE, Mullins LL, Chaney JM. Stigma Moderates the Relation Between Peer Victimization, Thwarted Belongingness, and Depressive Symptoms in Youth with Inflammatory Bowel Disease. J Pediatr Nurs 2021; 59:137-142. [PMID: 33878539 DOI: 10.1016/j.pedn.2021.04.011] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/09/2021] [Accepted: 04/10/2021] [Indexed: 10/21/2022]
Abstract
PURPOSE The stigmatizing nature of IBD symptoms may place youth at risk for being targets of peer victimization, potentially resulting in a decreased sense of social belongingness and poorer emotional adjustment. The present study tested a series of mediation and moderated mediation models examining the associations among peer victimization, thwarted social belongingness, and depressive symptoms, as well as the moderating role of IBD stigma in these associations. We hypothesized peer victimization would have an indirect effect on youth depressive symptoms through thwarted belongingness, and this effect would be amplified for youth endorsing greater IBD stigma. DESIGN AND METHODS Seventy-five youth (10-18 yrs.) diagnosed with IBD were recruited from a pediatric gastroenterology clinic. Participants completed self-report measures of IBD stigma, peer victimization, thwarted belongingness, and depressive symptoms. RESULTS As anticipated, mediation analyses revealed a significant peer victimization → thwarted belongingness → depressive symptoms indirect path. Moderated mediation analyses indicated that this indirect effect was moderated by IBD stigma and was significantly greater among youth reporting higher IBD stigma. CONCLUSIONS Youth who experience higher levels of IBD-related stigma are at increased risk for depressive symptoms as a function of the socially isolating effects of peer victimization. PRACTICE IMPLICATIONS Our findings highlight the need for routine screening and identification of the socioemotional challenges faced by youth with IBD. Clinical interventions that incorporate coping strategies aimed at minimizing youths' stigmatizing self-perceptions and improving overall social skills and social engagement may lessen the negative impact of peer victimization on youths' social and emotional adjustment.
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Affiliation(s)
- Caroline M Roberts
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University, USA.
| | - Samantha M Addante
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University, USA
| | - Marissa N Baudino
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University, USA
| | - Clayton S Edwards
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University, USA
| | | | - Noel J Jacobs
- University of Oklahoma Children's Physicians, General and Community Pediatrics, USA
| | - Jeanne Tung
- University of Oklahoma Children's Physicians, Pediatric Gastroenterology, USA
| | - John E Grunow
- University of Oklahoma Children's Physicians, Pediatric Gastroenterology, USA
| | - Larry L Mullins
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University, USA
| | - John M Chaney
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University, USA
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Vernon-Roberts A, Gearry RB, Day AS. Overview of Self-Management Skills and Associated Assessment Tools for Children with Inflammatory Bowel Disease. GASTROINTESTINAL DISORDERS 2021; 3:61-77. [DOI: 10.3390/gidisord3020007] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/19/2022] Open
Abstract
Self-management is a multi-modal approach for managing chronic conditions that encompasses a number of different elements; knowledge, adherence, self-regulation, communication, and cognitive factors. Self-management has been shown to be beneficial for adults with inflammatory bowel disease (IBD), and for children with IBD it may help them learn to take control of their complex treatment regimens and lead to positive disease outcomes. The development of self-management skills for children with IBD is vital in order to maximize their potential for health autonomy, but it is still an emergent field in this population. This review provides an over-arching view of the self-management elements specific to children with IBD, and highlights outcome measures that may be used to assess skills within each field as well as the efficacy of targeted interventions.
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Affiliation(s)
| | - Richard B. Gearry
- Department of Paediatrics, University of Otago, Christchurch 8011, New Zealand
| | - Andrew S. Day
- Department of Paediatrics, University of Otago, Christchurch 8011, New Zealand
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Differences in inflammatory bowel diseases between East and West: a Chinese perspective. J Public Health (Oxf) 2021. [DOI: 10.1007/s10389-019-01102-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/26/2022] Open
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Abstract
BACKGROUND It is not known if genetic background, characteristics at diagnosis, physical and psychological well-being, and adherence to a gluten-free diet are comparable between patients with familial or sporadic celiac disease. These issues were investigated in a follow-up study. METHODS Altogether 1064 patients were analyzed for celiac disease-associated serology, predisposing HLA-DQ, and non-HLA genotypes. Medical data were collected from patient records and supplementary interviews. Current symptoms and quality of life were further evaluated with the Gastrointestinal Symptom Rating Scale (GSRS), the Psychological General Well-Being questionnaire (PGWB), and Short Form 36 (SF-36) questionnaires. RESULTS Familial and sporadic groups differed (P < 0.001) in the reason for diagnosis and clinical presentation at diagnosis, familial patients being more often screen-detected (26% vs. 2%, P < 0.001) and having less often gastrointestinal (49% vs. 69%) and severe symptoms (47% vs. 65%). The groups were comparable in terms of histological damage, frequency of malabsorption, comorbidities, childhood diagnoses, and short-term treatment response. At the time of the study, familial cases reported fewer symptoms (21% vs. 30%, P = 0.004) and lower prevalence of all (78% vs. 86%, P = 0.007), neurological (10% vs. 15%, P = 0.013), and dermatological (9% vs. 17%, P = 0.001) comorbidities. Dietary adherence and GSRS scores were comparable, but familial cases had better quality of life according to PGWB and SF-36. High-risk genotype HLA-DQ2.5/DQ2.5 was more frequent among familial cases, and four non-HLA SNPs were associated with familial celiac disease. CONCLUSIONS Despite the greater proportion of high-risk genotypes, familial cases had milder symptoms at presentation than did sporadic cases. Worse experience of symptoms and poorer quality of life in sporadic disease indicate a need for intensified support.
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Roberts CM, Gamwell KL, Baudino MN, Grunow JE, Jacobs NJ, Tung J, Gillaspy SR, Hommel KA, Mullins LL, Chaney JM. The Contributions of Illness Stigma, Health Communication Difficulties, and Thwarted Belongingness to Depressive Symptoms in Youth with Inflammatory Bowel Disease. J Pediatr Psychol 2020; 45:81-90. [PMID: 31633787 DOI: 10.1093/jpepsy/jsz084] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/25/2019] [Revised: 09/21/2019] [Accepted: 09/22/2019] [Indexed: 01/16/2023] Open
Abstract
OBJECTIVE Youth with inflammatory bowel disease (IBD) often experience difficulties communicating about their disease. It is suspected that the stigmatizing nature of IBD symptoms contributes to youths' health communication difficulties, leaving youth feeling disconnected from their social environment and potentially resulting in decreased social belongingness and poorer emotional functioning. In this study, we tested an illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms serial mediation model. It was anticipated that youth illness stigma would confer a serial indirect effect on youth depressive symptoms through the sequential effects of stigma on health communication difficulties and thwarted social belongingness. METHODS Seventy-five youth with IBD between the ages of 10 and 18 completed measures of perceived illness stigma, health communication difficulties, thwarted belongingness, and depressive symptoms. RESULTS Results indicated a significant illness stigma → thwarted belongingness → depressive symptoms simple mediation path. Importantly, findings also revealed a significant serial mediation path for illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms. CONCLUSIONS Youth who perceive greater IBD stigma appear to experience increased difficulty communicating about their IBD with others, which in turn is associated with feelings of thwarted social belongingness and ultimately elevated depressive symptoms. These findings suggest that difficulty communicating about IBD is one potential route by which illness stigma has a negative impact on youth adjustment outcomes. Results could also inform clinical interventions to address IBD stigma and health communication difficulties associated with the social and emotional challenges in youth with IBD.
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Affiliation(s)
- Caroline M Roberts
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University
| | - Kaitlyn L Gamwell
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University
| | - Marissa N Baudino
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University
| | | | | | - Jeanne Tung
- University of Oklahoma Health Sciences Center
| | | | | | - Larry L Mullins
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University
| | - John M Chaney
- Center for Pediatric Psychology, Psychology Department, Oklahoma State University
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Factors Influencing Received Social Support Among Emerging Adults With Inflammatory Bowel Disease: A Cross-Sectional Study. Gastroenterol Nurs 2020; 43:429-439. [PMID: 33055542 DOI: 10.1097/sga.0000000000000483] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022] Open
Abstract
The majority of research among individuals with inflammatory bowel disease (IBD) focuses on perceived social support. A gap exists regarding the role of received social support in self-management enhancement. The purpose of this study was to examine specific contextual factors (individual, condition-specific, and emerging adulthood factors) that influence received social support (total, informational, emotional, and tangible) among emerging adults (ages 18-29 years) with IBD. A convenience sample of 61 emerging adults with a diagnosis of IBD was obtained. An association was found between high total received social support and several individual factors such as being closer to the younger end of the age range (ages 18-29 years), married, and fully employed. When controlling for time since diagnosis and symptom interference, high tangible received social support was associated with the use of immunomodulator and biological medications. Emerging adulthood factors were not associated with total or any types of received social support. Future research could examine differences between types of social support and self-management behaviors. These findings contribute a new direction for intervention development with a focus on individual and condition-specific factors to enhance received social support and ultimately health outcomes for individuals with IBD.
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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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Davis SP, Bolin LP, Crane PB, Wei H, Crandell J. Non-pharmacological interventions to manage fatigue in adults with inflammatory bowel disease: A systematic review and meta-analysis. Complement Ther Clin Pract 2020; 41:101229. [PMID: 32836107 DOI: 10.1016/j.ctcp.2020.101229] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/19/2020] [Revised: 08/03/2020] [Accepted: 08/08/2020] [Indexed: 12/30/2022]
Abstract
BACKGROUND AND PURPOSE The prevalence of fatigue is higher in adults with inflammatory bowel disease (IBD). There is limited information on the effectiveness of non-pharmacological interventions to manage fatigue. The purposes of this review is to evaluate the effectiveness of these interventions to manage fatigue in adults with IBD. MATERIALS AND METHODS A systematic review was conducted based on the PRISMA guidelines. Comprehensive Meta-Analysis software was used to compute metaanalysis. RESULTS Eleven studies were included in the review. The interventions to manage fatigue included problem-solving therapy, solution-focused therapy, cognitive behavioral therapy, psychoeducational intervention, exercise advice with omega-3 supplements, electro-acupuncture, and AndoSan. The pooled evidence from the metaanalysis demonstrated that non-pharmacological interventions could decrease IBDFatigue (SMD = 0.33, 95% CI [0.10, 0.55], p = 0.005). CONCLUSION The pooled data indicate that non-pharmacological interventions are helpful in managing IBD-Fatigue. Additionally, the non-pharmacological interventions reviewed could be utilized to promote self-management in IBD.
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Affiliation(s)
- Suja P Davis
- School of Nursing, UNC-CH, CB#7460, Chapel Hill, NC, 27599, USA.
| | - Linda P Bolin
- Department of Nursing Science, College of Nursing, East Carolina University, 2205 W 5th St, Greenville, NC, 27889, USA.
| | - Patricia B Crane
- Carol Grotnes Belk Endowed Chair, 9201, University City Blvd, Charlotte, NC, USA.
| | - Holly Wei
- College of Nursing, East Carolina University, 2205 W 5th St, Greenville, NC, 27889, USA.
| | - Jamie Crandell
- School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599, USA.
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Naeck-Boolauky P, Adio J, Burch J. Review of normal gastrointestinal tract, ulcerative colitis, proctitis and rectal medication adherence. BRITISH JOURNAL OF NURSING (MARK ALLEN PUBLISHING) 2020; 29:805-811. [PMID: 32697644 DOI: 10.12968/bjon.2020.29.14.805] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/07/2023]
Abstract
The gastrointestinal (GI) tract has a number of functions-ingestion, digestion, absorption and elimination. When the GI tract is working normally, it is efficient. However, this can change when disease, such as inflammatory bowel disease (IBD) occurs. IBD is a long-term relapsing and remitting autoimmune disease; it incorporates ulcerative colitis (UC). In UC, part or all the mucosa lining the rectum and colon becomes inflamed and ulcerated. UC that affects the rectum only is called proctitis. Effective treatment is essential. It is better to target the rectal mucosa directly in proctitis, using topical rectal medications in enemas or suppositories, as these have fewer side-effects and resolve symptoms more quickly than systemic drugs. However, patients may not feel clear about aspects of their IBD care and can find it difficult to initiate and comply with treatment and maintenance regimens. Nurses need to educate and support them to achieve optimal therapeutic outcomes in both the immediate and long terms.
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Affiliation(s)
| | - Jitka Adio
- Inflammatory Bowel Disease Clincial Nurse Specialist, St Mark's Hospital, Harrow, Middlesex
| | - Jennie Burch
- Head of Gastrointestinal Nurse Education, St Mark's Hospital, Harrow, Middlesex
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Plevinsky JM, Wojtowicz AA, Miller SA, Greenley RN. Longitudinal Barriers to Thiopurine Adherence in Adolescents With Inflammatory Bowel Diseases. J Pediatr Psychol 2020; 44:52-60. [PMID: 30137372 DOI: 10.1093/jpepsy/jsy062] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/14/2018] [Accepted: 07/20/2018] [Indexed: 01/29/2023] Open
Abstract
Objectives Cross-sectionally, more adherence barriers are associated with lower medication adherence. However, little is known about longitudinal associations between adherence barriers and adherence. Among adolescents with inflammatory bowel diseases (IBD), this study examined both (1) how time-varying self-reported adherence barriers affect daily thiopurine adherence and (2) how adherence barriers at baseline affect daily thiopurine adherence over a six-month period. Methods Eighty-one adolescents 11-18 years old prescribed a once-daily oral IBD maintenance medication participated in a six-month observational study. Adherence barriers were self-reported monthly via the Medication Adherence Measure (MAM): Medication Subscale. Daily adherence estimates were collected via Medication Event Monitoring System (MEMS) Track Caps. Results Generalized linear mixed modeling indicated that time alone did not significantly predict whether one was more likely to be adherent (p = .602). However, increasing adherence barriers lowered the likelihood that a participant would be adherent on a given day, and the interaction between time and barriers predicted likelihood of adherence on a given day (p < .01). Specifically, when participants reported no adherence barriers at baseline, adherence did not significantly change over time (p = .369). However, when barriers were endorsed, adherence decreased over time (p < .01). Conclusions Fewer adherence barriers over time predicted greater likelihood of adherence on a given day, which is consistent with previous cross-sectional research. Routine assessment of barriers to adherence over the course of adolescence is critical in addressing suboptimal adherence behavior in youth with IBD.
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Kubesch A, Boulahrout P, Filmann N, Blumenstein I, Hausmann J. Real-world data about emotional stress, disability and need for social care in a German IBD patient cohort. PLoS One 2020; 15:e0227309. [PMID: 31899780 PMCID: PMC6941800 DOI: 10.1371/journal.pone.0227309] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/11/2019] [Accepted: 11/23/2019] [Indexed: 12/25/2022] Open
Abstract
To date, there is insufficient insight into inflammatory bowel disease (IBD)-associated stress, recognized disability, and contact with the social care system. We aimed to assess these parameters in IBD patients and a non-IBD control group, who were invited to participate in an online survey developed specifically for this study (www.soscisurvey.de) with the help of IBD patients. 505 IBD patients and 166 volunteers (i.e., control group) participated in the survey. IBD patients reported significantly increased levels of stress within the last six months and five years (p<0.0001) and were more likely to have a recognized disability (p<0.0001). A low academic status was the strongest indicator of a disability (p = 0.006). Only 153 IBD patients (30.3%) reported contact with the social care system, and a disability was the strongest indicator for this (p<0.0001). Our study provides data on stress and disability in a large unselected German IBD cohort. We showed that patients with IBD suffer more often from emotional stress and more often have a recognized disability. As only about 1/3 of the patients had come into contact with the social care system and the corresponding support, this patient group is undersupplied in this area.
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Affiliation(s)
- Alica Kubesch
- Department of Internal Medicine 1, Goethe-University Hospital, Frankfurt, Germany
| | - Patric Boulahrout
- Department 4 Social Work and Health, Frankfurt University of Applied Sciences, Frankfurt, Germany
| | - Natalie Filmann
- Institute of Biostatistics and Math Modeling, Goethe-University Hospital, Frankfurt, Germany
| | - Irina Blumenstein
- Department of Internal Medicine 1, Goethe-University Hospital, Frankfurt, Germany
| | - Johannes Hausmann
- Department of Internal Medicine 1, Goethe-University Hospital, Frankfurt, Germany
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Makanjee CR, Xu D, Sarswat D, Bergh AM. 'It is just part of life': patient perspectives and experiences of diagnostic imaging referrals. Aust J Prim Health 2020; 26:507-513. [PMID: 33211998 DOI: 10.1071/py20146] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/17/2020] [Accepted: 09/24/2020] [Indexed: 11/23/2022]
Abstract
Referral for a medical imaging examination is an integral part of the medical consultation; however, not much is known about patients' experience of these referrals. The life-world experiences and perspectives of patients as 'persons' referred for an imaging investigation are explored through the lens of person-centred and whole-person care. Individual interviews were conducted with 22 patients referred for an imaging investigation. The findings were interpreted in terms of the journey of a patient; that is, the processes the patient undergoes as a person in the course of a referral for a diagnostic imaging investigation as part of the disease and its treatment. Participants' life and health journeys are described in terms of three themes: (1) events leading to an imaging examination; (2) the imaging referral experience embedded within the medical encounter; and (3) the integration of the findings of the imaging examination into their everyday life. Health practitioners should be mindful of the complexity of medical consultations that include a referral for an imaging investigation.
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Affiliation(s)
- Chandra Rekha Makanjee
- Department of Medical Radiation Science, University of Canberra, ACT 2617, Australia; and Corresponding author.
| | - Deon Xu
- Prince of Wales Hospital, Randwick, NSW 2031, Australia
| | | | - Anne-Marie Bergh
- Research Centre for Maternal, Fetal, Newborn and Child Health Care Strategies, University of Pretoria, South Africa
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The Role of an Inflammatory Bowel Disease Nurse in the Follow-Up of Patients From a Latin American Inflammatory Bowel Disease Program. Gastroenterol Nurs 2020; 43:E16-E23. [DOI: 10.1097/sga.0000000000000436] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/24/2022] Open
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Kamp KJ, Luo Z, Holmstrom A, Given B, Wyatt G. Self-Management Through Social Support Among Emerging Adults With Inflammatory Bowel Disease. Nurs Res 2019; 68:285-295. [PMID: 31265438 DOI: 10.1097/nnr.0000000000000354] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/14/2022]
Abstract
BACKGROUND Emerging adulthood is a unique developmental stage, which may affect individuals' self-management behaviors, social support, and the relationship between these two constructs. Among older adults, social support has been shown to improve self-management behaviors for individuals with chronic conditions; however, this relationship has not been examined with emerging adults (age 18-29 years) who have inflammatory bowel disease (IBD). OBJECTIVES The aim of the study was to examine the relationship between two conceptualizations of social support (received and perceived availability of social support) and IBD-related self-management behaviors among emerging adults with IBD. METHODS A convenience sample of emerging adult IBD individuals (currently prescribed medication to manage IBD) were recruited through ResearchMatch, Facebook, and word of mouth. The study was guided by key elements of the individual and family self-management theory. Participants responded to demographic and condition-specific questionnaires: the Inventory of Dimensions of Emerging Adulthood, the Inventory of Socially Supportive Behaviors, the Medical Outcomes: Social Support Survey, the Medication Adherence Report Scale, and the Dietary Screener Questionnaire. RESULTS Emerging adults with high received informational support reported greater medication adherence compared to those with low received informational support when controlling for biological medications, time since diagnosis, symptom frequency, and feeling in-between adolescence and adulthood. Neither type of social support was associated with diet modification. DISCUSSION Received informational social support, medication type, time since diagnosis, symptoms, and emerging adulthood factors have the potential to influence medication adherence. Received informational social support interventions, such as patient-to-patient or group-based mentoring, may serve to improve medication adherence among emerging adults with IBD.
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Affiliation(s)
- Kendra J Kamp
- Kendra J. Kamp, PhD, RN, is Post-Doctoral Fellow, Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle. At the time this research was completed, Kendra was a PhD candidate at the College of Nursing, Michigan State University, East Lansing. Zhehui Luo, PhD, is Associate Professor, Department of Epidemiology and Biostatistics, Michigan State University, East Lansing. Amanda Holmstrom, PhD, is Associate Professor, College of Communication Arts and Sciences, Michigan State University, East Lansing. Barbara Given, PhD, RN, FAAN, is Professor and Interim Associate Dean for Research, College of Nursing, Michigan State University, East Lansing. Gwen Wyatt, PhD, RN, FAAN, is Professor, College of Nursing, Michigan State University, East Lansing
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Abstract
BACKGROUND Inflammatory bowel disease (IBD) is an incurable autoimmune disease causing overwhelming physical distress and psychological adaptation. PURPOSE To explore the associations between foundational influences and personal characteristics predictors to the achievement of mastery of health in patients with IBD. THEORY Orem's Theory of Self-Care, Resnick's Theory of Self-Efficacy, and Pearlin and Schooler's study of the structure of coping guided this study. The conceptual framework used was the Functional Mastery of Health Ownership (FMHO) model. METHODS A predictive correlational study design using self-administered questionnaires was used. A convenience sample of 151 adults with a diagnosis of IBD for at least 1 year was recruited from the patient population of a gastroenterology medical practice. RESULTS Data were analyzed using multiple regression with standard entry factor loading. Portions of the model were found to be significant and account for 44% of the variance (p < .001; R 2 = .44, Adjusted R 2 = .41). Significant relationships were found among mastery and IBD self-efficacy, perception of mastery, and current health status. Females had higher mastery scores than males. SIGNIFICANCE These findings support the use of a modified FMHO model to predict needs that enable individualized stewardship of health for patients with IBD.
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Substance Use in Adolescents and Young Adults With Inflammatory Bowel Diseases: An Exploratory Cluster Analysis. J Pediatr Gastroenterol Nutr 2019; 69:324-329. [PMID: 30985442 DOI: 10.1097/mpg.0000000000002365] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
OBJECTIVES Adolescents and young adults (AYAs) with chronic illnesses use substances at similar, if not greater, rates compared to healthy peers. The present study aimed to examine rates and patterns of tobacco use, marijuana use, and binge drinking in AYAs with inflammatory bowel diseases. We expected that substance use would be associated with poorer physical health, psychosocial functioning, and disease management. METHODS One hundred thirty-two AYAs completed a single set of surveys assessing demographics, disease activity, healthcare utilization, health-related quality of life (HRQoL), inflammatory bowel disease-specific self-efficacy, adherence barriers, disease management skills, and substance use in the last 30 days (eg, tobacco use, marijuana use, binge drinking). Exploratory cluster analyses, followed by chi-square tests and analyses of variance examined patterns of substance use and correlates of cluster membership. RESULTS Four patterns emerged from the sample: Global Users (n = 17), Marijuana Users Engaging in Binge Drinking (n = 18), Exclusive Binge Drinkers (n = 21), and Global Abstainers (n = 76). Groups differed by age, gender, disease activity, healthcare utilization, HRQoL, self-efficacy, and adherence barriers with medium and large effect sizes (P < .05). CONCLUSIONS Older age, male gender, active disease, at least 1 hospitalization in the past year, low self-efficacy, low HRQoL, and high adherence barriers were significantly more likely for those reporting multisubstance use. In addition, all those reporting both marijuana use and binge drinking also reported tobacco use. Future research ought to examine these associations longitudinally and throughout the transition to adult care.
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Kamp KJ, West P, Holmstrom A, Luo Z, Wyatt G, Given B. Systematic Review of Social Support on Psychological Symptoms and Self-Management Behaviors Among Adults With Inflammatory Bowel Disease. J Nurs Scholarsh 2019; 51:380-389. [PMID: 31119856 DOI: 10.1111/jnu.12487] [Citation(s) in RCA: 19] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/09/2019] [Indexed: 12/14/2022]
Abstract
PURPOSE The purpose was to determine the relationship between social support, psychological symptoms and self-management behaviors among adults with inflammatory bowel disease (IBD) and examine the influence of types of social support and patient age. DESIGN This was a systematic review. PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Communication and Mass Media Complete, and Communication Abstracts were searched. Publication dates were limited to January 2000 to August 2018. METHODS The systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement, and quality was appraised based on the Critical Appraisal Skills Programme for cohort studies tool. The data were synthesized using narrative synthesis techniques. FINDINGS The literature review yielded 458 results. Eight articles met inclusion criteria. Articles utilized a variety of conceptualizations of both social support and self-management behaviors, making comparisons difficult. Findings demonstrated an inverse relationship between social support and psychological symptoms, and in one study only when social support buffered high stress. Studies with significant relationships between age and self-management behaviors indicated that a lower age was associated with decreased self-management behaviors. CONCLUSIONS Social support has the potential to influence psychological symptoms among patients with IBD. Future research should examine types of social support (i.e., emotional, informational, and tangible support) and measure levels of received social support. CLINICAL RELEVANCE Social support may serve as a modifiable factor to improve psychological symptoms among adults with IBD. Younger adults (age <40 years) may benefit from specialized interventions to address self-management behaviors.
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Affiliation(s)
- Kendra J Kamp
- Psi , Postdoctoral Fellow, University of Washington, Department of Biobehavioral Nursing and Health Informatics, Seattle, WA,, USA
| | - Patricia West
- Alpha Psi , PhD Student, Michigan State University, East Lansing, MI, USA
| | - Amanda Holmstrom
- Associate Professor, Michigan State University, East Lansing, MI, USA
| | - Zhehui Luo
- Associate Professor, Michigan State University, East Lansing, MI, USA
| | - Gwen Wyatt
- Alpha Psi , Professor, Michigan State University, East Lansing, MI, USA
| | - Barbara Given
- Alpha Psi , Professor, Interim Associate Dean for Research, East Lansing, MI, USA
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Stewart JC, Lewthwaite R, Rocktashel J, Winstein CJ. Self-efficacy and Reach Performance in Individuals With Mild Motor Impairment Due to Stroke. Neurorehabil Neural Repair 2019; 33:319-328. [PMID: 30880592 DOI: 10.1177/1545968319836231] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/20/2022]
Abstract
BACKGROUND Persistent deficits in arm function are common after stroke. An improved understanding of the factors that contribute to the performance of skilled arm movements is needed. One such factor may be self-efficacy (SE). OBJECTIVE To determine the level of SE for skilled, goal-directed reach actions in individuals with mild motor impairment after stroke and whether SE for reach performance correlated with actual reach performance. METHODS A total of 20 individuals with chronic stroke (months poststroke: mean 58.1 ± 38.8) and mild motor impairment (upper-extremity Fugl-Meyer [FM] motor score: mean 53.2, range 39 to 66) and 6 age-matched controls reached to targets presented in 2 directions (ipsilateral, contralateral). Prior to each block (24 reach trials), individuals rated their confidence on reaching to targets accurately and quickly on a scale that ranged from 0 ( not very confident) to 10 ( very confident). RESULTS Overall reach performance was slower and less accurate in the more-affected arm compared with both the less-affected arm and controls. SE for both reach speed and reach accuracy was lower for the more-affected arm compared with the less-affected arm. For reaches with the more-affected arm, SE for reach speed and age significantly predicted movement time to ipsilateral targets ( R2 = 0.352), whereas SE for reach accuracy and FM motor score significantly predicted end point error to contralateral targets ( R2 = 0.291). CONCLUSIONS SE relates to measures of reach control and may serve as a target for interventions to improve proximal arm control after stroke.
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Affiliation(s)
| | - Rebecca Lewthwaite
- 2 Rancho Los Amigos National Rehabilitation Center, Downey, CA, USA.,3 University of Southern California, Los Angeles, CA, USA
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Tran L, Mulligan K. A Systematic Review of Self-Management Interventions for Children and Adolescents With Inflammatory Bowel Disease. Inflamm Bowel Dis 2019; 25:685-698. [PMID: 30295786 DOI: 10.1093/ibd/izy299] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/27/2018] [Indexed: 12/13/2022]
Abstract
BACKGROUND Self-management of inflammatory bowel disease is complex. Children and adolescents (CA) with inflammatory bowel disease (IBD) often have difficulty with managing aspects of their condition, resulting in treatment nonadherence and impaired psychosocial function. Self-management interventions are developed to help support patients and their parents/carers to effectively self-manage. The aim of this systematic review was to evaluate the efficacy of self-management interventions in children and adolescents with IBD. METHODS The review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search of the following databases was conducted to identify controlled trials of interventions aiming to enhance IBD self-management in CA: Medline, Embase, Cochrane, CINAHL, and PsychINFO. Two reviewers screened articles for inclusion. RESULTS Nine trials (11 articles) met the inclusion criteria. Most were underpowered, with 7 recruiting fewer than 50 participants. The interventions aimed to enhance psychological well-being (n = 5), medication adherence (n = 3), or calcium intake (n = 1). There was considerable heterogeneity in intervention content and outcomes assessment. Some benefits were reported in disease activity, adherence, and psychological well-being, but findings were inconsistent. CONCLUSIONS Self-management is difficult for CA with IBD; however, this review identified only a small number of interventions to support self-management, most of which were underpowered and only 1 that was conducted outside the United States. Clinical consensus is required on which self-management activities should be recommended to patients and targeted in interventions and which core outcomes should be assessed. Adequately powered trials of interventions are required to identify how best to support self-management in CA with IBD.
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Affiliation(s)
- Lien Tran
- Centre for Health Services Research, School of Health Sciences, City, University of London, London, UK
| | - Kathleen Mulligan
- Centre for Health Services Research, School of Health Sciences, City, University of London, London, UK.,East London NHS Foundation Trust, London, UK
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