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Duan R, Mei W, Lei M, Chen D, Pan T, Kong F, Chen Y. Care needs profiles of Crohn's disease patients and their associations with symptom clusters, post-traumatic growth, and family function: a latent profile analysis. BMC Gastroenterol 2025; 25:351. [PMID: 40346452 PMCID: PMC12063445 DOI: 10.1186/s12876-025-03953-5] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/13/2025] [Accepted: 04/29/2025] [Indexed: 05/11/2025] Open
Abstract
BACKGROUND AND AIMS The care needs of patients with Crohn's disease (CD) may be heterogeneous. This study aimed to explore the latent class of care needs of patients with CD and differences in their characteristics and to analyze the factors influencing the different latent classes. METHODS A convenience sampling method was used to select 250 patients with CD who attended a tertiary-level hospital in Nanjing from August to November 2024 for the study. They were surveyed via the General Information Questionnaire, the Crohn's Disease Care Needs Scale (CD-CNS), the Inflammatory Bowel Disease (IBD) Patient Symptom Clusters Assessment Scale, the Family Adaptability and Cohesion Scale (FACES), and the Post-traumatic Growth Inventory (PTGI). The latent classes of care needs of CD patients were identified via latent profile analysis (LPA), and the factors influencing their latent classes were analyzed via multiple logistic regression analyses. RESULTS (1) The LPA results revealed that the care needs of CD patients were divided into three profiles as the best model fitting indicators: the "low-care-needs-adaptation group" (n = 96, 38.4%), the "moderate-care-needs-growth group" (n = 81, 32.4%), and the "high-care-needs-distress group" (n = 73, 29.2%). (2) Regression analyses revealed that current disease status, the presence of a stoma, symptom burden, family adaptability and cohesion, and post-traumatic growth (PTG) were influential factors in different latent classes. CONCLUSION There is significant heterogeneity in the care needs of CD patients. Care needs to focus on patients with high care needs and enhance their symptom management and psychological interventions to improve their PTG and reduce their disease burden.
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Affiliation(s)
- Rongfei Duan
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, 210023, China
| | - Wan Mei
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, 210023, China
| | - Ming Lei
- Jiangsu Health Vocational College, Nanjing, 211800, China
| | - Danlei Chen
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, 210023, China
| | - Ting Pan
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, 210023, China
| | - Fang Kong
- Gastroenterological Disease Diagnosis and Treatment Centre, The Second Hospital of Nanjing, Affiliated to Nanjing University of Chinese Medicine, Nanjing, 210003, China
| | - Yan Chen
- Department of Nursing, The Second Hospital of Nanjing, Nanjing University of Chinese Medicine, 1 Zhongfu Road, Gulou District, Nanjing, 210003, Jiangsu Province, China.
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Luo A, Yao D, Wang M, Jin L, Ran Z. Global and Chinese Burden of Inflammatory Bowel Disease From 1990 to 2021: A Systematic Analysis and Prediction of Disease Burden. JGH Open 2025; 9:e70160. [PMID: 40343158 PMCID: PMC12059552 DOI: 10.1002/jgh3.70160] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/20/2024] [Revised: 03/23/2025] [Accepted: 03/31/2025] [Indexed: 05/11/2025]
Abstract
Background Recent shifts in the global epidemiology of inflammatory bowel disease (IBD), particularly in emerging industrialized nations like China, underscore the need for in-depth analysis. Methods Utilizing the Global Burden Of Disease (GBD) 2021 database, we systematically examined IBD incidence, prevalence, death rates, and disability-adjusted life years (DALYs) across Global, different social development index (SDI) regions, and countries from 1990 to 2021. Age-standardized rates (ASR) and statistical metrics (APC, EAPC, AAPC) were employed to assess trends in IBD development, and a Bayesian age-period-cohort (BAPC) model was used to forecast future scenarios. Results In 2021, the highest IBD incidence rates were observed in Canada (26.83/100000), Greenland (24.57/100000), and New Zealand (23.69/100000), markedly contrasting China's rate of 1.4/100000. Globally, IBD incidence increased modestly from 4.22/100000 in 1990 to 4.45/100000 in 2021 (EAPC = 0.29%). China experienced a more pronounced rise, with incidence jumping from 0.74/100000 to 1.4/100000 (EAPC = 2.93%). Notably, China also witnessed substantial declines in IBD deaths (56.00%) and DALYs (58.22%). The Middle SDI region exhibited a greater magnitude of change than Global and other SDI regions. The temporal trends in the incidence and prevalence of IBD in the countries are predominantly influenced by the period up to the year 2015. In China, between the ages of 15 and 49, the incidence and prevalence of IBD are projected to remain consistent with current standards, while the death rate and DALYs are predicted to exhibit a sustained decline. Conclusion Despite the notable increase in IBD incidence in China, significant reductions in mortality and morbidity demonstrate the effectiveness of medical interventions and health system improvements.
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Affiliation(s)
- An Luo
- Department of GastroenterologyZhou Pu Hospital Affiliated to Shanghai University of Medicine & Health SciencesShanghaiChina
| | - Dongying Yao
- Department of GastroenterologyZhou Pu Hospital Affiliated to Shanghai University of Medicine & Health SciencesShanghaiChina
| | - Miao Wang
- Department of GastroenterologyZhou Pu Hospital Affiliated to Shanghai University of Medicine & Health SciencesShanghaiChina
| | - Liwen Jin
- Department of GastroenterologyZhou Pu Hospital Affiliated to Shanghai University of Medicine & Health SciencesShanghaiChina
| | - Zhihua Ran
- Department of GastroenterologyZhou Pu Hospital Affiliated to Shanghai University of Medicine & Health SciencesShanghaiChina
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3
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Napolitano D, Lo Cascio A, Bozzetti M, Povoli A, Grubissa S, Molino L, Marino M, Berretti D, Puca P, Lavigna DIR, Grilli F, Antonelli G, Calvez V, Di Petrillo A, Onali S, Gasbarrini A, Fiorino G, Scaldaferri F. Patient Satisfaction with IBD Undergoing Colonoscopy: A Multicenter Cross-Sectional Study. J Clin Med 2025; 14:2562. [PMID: 40283393 PMCID: PMC12027919 DOI: 10.3390/jcm14082562] [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: 03/12/2025] [Revised: 03/30/2025] [Accepted: 04/03/2025] [Indexed: 04/29/2025] Open
Abstract
Background: Colonoscopy is crucial for diagnosing and monitoring inflammatory bowel disease (IBD), assessing disease activity, and detecting dysplasia. However, patient adherence to surveillance remains suboptimal due to discomfort, anxiety, and concerns about bowel preparation. Methods: This multicenter cross-sectional study assessed patient satisfaction with colonoscopy in IBD patients across three Italian centers. Participants completed pre- and post-examination questionnaires, including the Endoscopy Customer Satisfaction Questionnaire (ECSQ) and Perceived Stress Scale (PSS-10). Clinical factors, bowel preparation methods, and healthcare provider expertise were analyzed. Results: Among 444 enrolled patients, overall satisfaction was high (98.8%) but varied across procedural phases. Higher satisfaction was predicted by expert endoscopists (β = 2.11, p = 0.012), disease remission (β = 1.70, p = 0.020), and frequent endoscopic procedures in the last 24 months (β = 0.46, p = 0.041). Conversely, severe disease activity (β = -3.87, p < 0.001) was associated with lower satisfaction. Deep sedation and high-volume bowel preparation negatively impacted satisfaction. Conclusions: Optimizing bowel preparation, enhancing healthcare provider expertise, and implementing stress-reducing strategies could improve patient adherence to surveillance guidelines in IBD care.
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Affiliation(s)
- Daniele Napolitano
- CEMAD—Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy; (D.N.); (D.I.R.L.); (F.G.); (V.C.); (A.G.); (F.S.)
| | - Alessio Lo Cascio
- Department of Nursing Research and Management, La Maddalena Cancer Center, 90146 Palermo, Italy;
| | - Mattia Bozzetti
- Direction of Health Professions, ASST Cremona, 26100 Cremona, Italy
| | - Arianna Povoli
- Department of Gastroenterology, Azienda Sanitaria Universitaria Friuli Centrale, 33100 Udine, Italy; (A.P.); (S.G.); (M.M.); (D.B.)
| | - Simonetta Grubissa
- Department of Gastroenterology, Azienda Sanitaria Universitaria Friuli Centrale, 33100 Udine, Italy; (A.P.); (S.G.); (M.M.); (D.B.)
| | - Luca Molino
- School of Medicine, Faculty of Medicine, Università Cattolica del Sacro Cuore, Largo Francesco Vito, 1, 00168 Rome, Italy;
| | - Marco Marino
- Department of Gastroenterology, Azienda Sanitaria Universitaria Friuli Centrale, 33100 Udine, Italy; (A.P.); (S.G.); (M.M.); (D.B.)
| | - Debora Berretti
- Department of Gastroenterology, Azienda Sanitaria Universitaria Friuli Centrale, 33100 Udine, Italy; (A.P.); (S.G.); (M.M.); (D.B.)
| | - Pierluigi Puca
- CEMAD—Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy; (D.N.); (D.I.R.L.); (F.G.); (V.C.); (A.G.); (F.S.)
| | | | - Fabio Grilli
- CEMAD—Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy; (D.N.); (D.I.R.L.); (F.G.); (V.C.); (A.G.); (F.S.)
| | - Giulio Antonelli
- Gastroenterology Unit, Nuovo Regina Margherita Hospital, 00153 Rome, Italy
| | - Valentin Calvez
- CEMAD—Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy; (D.N.); (D.I.R.L.); (F.G.); (V.C.); (A.G.); (F.S.)
| | - Amalia Di Petrillo
- Department of Medical Sciences and Public Health, University of Cagliari, 09142 Cagliari, Italy; (A.D.P.); (S.O.)
| | - Sara Onali
- Department of Medical Sciences and Public Health, University of Cagliari, 09142 Cagliari, Italy; (A.D.P.); (S.O.)
| | - Antonio Gasbarrini
- CEMAD—Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy; (D.N.); (D.I.R.L.); (F.G.); (V.C.); (A.G.); (F.S.)
- Department of Medical and Surgical Sciences, Fondazione Policlinico Universitario A. Gemelli IRCCS, Università Cattolica del Sacro Cuore, 00168 Rome, Italy
| | - Gionata Fiorino
- IBD Unit, Department of Gastroenterology and Digestive Endoscopy, San Camillo-Forlanini Hospital, 00152 Rome, Italy;
| | - Franco Scaldaferri
- CEMAD—Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy; (D.N.); (D.I.R.L.); (F.G.); (V.C.); (A.G.); (F.S.)
- Department of Medical and Surgical Sciences, Fondazione Policlinico Universitario A. Gemelli IRCCS, Università Cattolica del Sacro Cuore, 00168 Rome, Italy
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Jones K, Baker K, Tew GA, Naisby J. Reactions, Reality, and Resilience in Adults with Crohn's Disease: A Qualitative Study. CROHN'S & COLITIS 360 2025; 7:otaf003. [PMID: 39917030 PMCID: PMC11799741 DOI: 10.1093/crocol/otaf003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/12/2024] [Indexed: 02/09/2025] Open
Abstract
Background Crohn's disease (CD) is a lifelong condition that poses unique challenges. This study reports findings from a person's perspective of living with CD to help enhance the understanding of an individual's specific care and support needs. Methods Semi-structured telephone interviews were conducted with a convenience sample of adults with Crohn's disease recruited from Newcastle Hospitals NHS Foundation Trust. Data were analyzed after data collection using thematic analysis. Results Forty-one (68% female) participants aged 49.1 ± 12 years with a disease duration between 1 and 55 years were interviewed. Three overarching themes emerged, along with 12 subthemes: (1) reactions to presenting symptoms, emotions, and challenges at diagnosis; (2) reality of living with the condition, seeking information, decision making, psychological challenges, experiencing symptoms/complications during remission and the impact on social life, education, employment, and relationships; (3) Resilience involving emotional adaptations, strategies on self-management, social comparisons as a means of coping and barriers to resilience. Conclusions The results highlight the complex health journey and challenges faced by people living with Crohn's disease and provide health care professionals with a greater insight into the psychological challenges and emotional complexities of the condition to facilitate a more holistic approach to planning care.
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Affiliation(s)
- Katherine Jones
- Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Coventry CV4 7AL, UK
| | - Katherine Baker
- Department of Sport, Exercise and Rehabilitation, University of Northumbria at Newcastle, Newcastle Upon Tyne NE7 7YT, UK
| | - Garry A Tew
- Institute for Health and Care Improvement, York St John University, Lord Mayor’s Walk, York YO31 7EX, UK
| | - Jenni Naisby
- Department of Sport, Exercise and Rehabilitation, University of Northumbria at Newcastle, Newcastle Upon Tyne NE7 7YT, UK
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De Souza V, Cruz MDP, Mello DC, Oliveira APLD, Martins RÁBL, Longo L, Parizotto NA, Marcos RL. Exploring photobiomodulation in the management of bowel diseases: a concise critical review. Lasers Med Sci 2024; 39:265. [PMID: 39463190 DOI: 10.1007/s10103-024-04217-6] [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: 06/26/2024] [Accepted: 10/17/2024] [Indexed: 10/29/2024]
Abstract
The complexity of the gastrointestinal system plays a crucial role in coordinating essential processes such as digestion, nutrient absorption, and waste elimination. inflammatory bowel diseases (IBD) pose significant treatment challenges due to their complex aetiology and varied symptoms. Conventional therapeutic approaches often involve pharmacological interventions, which may have side effects and limited efficacy. Photobiomodulation (PBM), also known as low-level light therapy, has emerged as a promising therapeutic or adjunctive alternative in the treatment of intestinal diseases. The search was conducted in the MEDLINE database via PubMed, SCOPUS, covering the period from 1990 to 2024. A total of 72 studies were selected, of which 9 focused on inflammatory bowel diseases IBD, including ulcerative colitis (UC) and Crohn's disease (CD). Among these studies, 1 was clinical protocol while eight experimental. The results showed that PBM has a significant positive effect in IBD studies in rats, with reduction of intestinal inflammation, improvement of mucosal integrity, and modulation of the immune response. However, no clinical studies were found necessary to obtain results and establish effective and safe treatment protocols. Nevertheless, PBM holds potential as a non-invasive and complementary therapeutic approach for managing IBD, offering new perspectives for the treatment of chronic intestinal diseases. Therefore, this brief review emphasizes the need to transition from preclinical research to clinical research on this topic and highlights the scarcity of clinical studies.
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Affiliation(s)
- Vanessa De Souza
- Program in Medicine - Biophotonics, University Nove de Julho (UNINOVE), Rua Vergueiro, 239/245, São Paulo, SP, 01504-000, Brazil.
| | - Marlon da Palma Cruz
- Program in Medicine - Biophotonics, University Nove de Julho (UNINOVE), Rua Vergueiro, 239/245, São Paulo, SP, 01504-000, Brazil
| | - Dominique Cavalcanti Mello
- Program in Medicine - Biophotonics, University Nove de Julho (UNINOVE), Rua Vergueiro, 239/245, São Paulo, SP, 01504-000, Brazil
| | - Ana Paula Ligeiro de Oliveira
- Program in Medicine - Biophotonics, University Nove de Julho (UNINOVE), Rua Vergueiro, 239/245, São Paulo, SP, 01504-000, Brazil
| | - Rodrigo Álvaro Brandão Lopes Martins
- Laboratory of Biophotonics and Experimental Therapeutics - LABITEX, Universidade Evangélica de Goiás - UniEvangélica, Av. Universitária S/N, Anápolis, GO, Brazil
| | | | - Nivaldo Antonio Parizotto
- Biomedical Engineering, University Brasil, Rua Carolina Fonseca, 584 - Itaquera, São Paulo, SP, 08230-030, Brazil
| | - Rodrigo Labat Marcos
- Program in Medicine - Biophotonics, University Nove de Julho (UNINOVE), Rua Vergueiro, 239/245, São Paulo, SP, 01504-000, Brazil
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6
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Phuong-Nguyen K, McGee SL, Aston-Mourney K, Mcneill BA, Mahmood MQ, Rivera LR. Yoyo Dieting, Post-Obesity Weight Loss, and Their Relationship with Gut Health. Nutrients 2024; 16:3170. [PMID: 39339770 PMCID: PMC11435324 DOI: 10.3390/nu16183170] [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: 08/21/2024] [Revised: 09/13/2024] [Accepted: 09/18/2024] [Indexed: 09/30/2024] Open
Abstract
Excessive body weight is associated with many chronic metabolic diseases and weight loss, so far, remains the gold standard treatment. However, despite tremendous efforts exploring optimal treatments for obesity, many individuals find losing weight and maintaining a healthy body weight difficult. Weight loss is often not sustainable resulting in weight regain and subsequent efforts to lose weight. This cyclic pattern of weight loss and regain is termed "yoyo dieting" and predisposes individuals to obesity and metabolic comorbidities. How yoyo dieting might worsen obesity complications during the weight recurrence phase remains unclear. In particular, there is limited data on the role of the gut microbiome in yoyo dieting. Gut health distress, especially gut inflammation and microbiome perturbation, is strongly associated with metabolic dysfunction and disturbance of energy homeostasis in obesity. In this review, we summarise current evidence of the crosstalk between the gastrointestinal system and energy balance, and the effects of yoyo dieting on gut inflammation and gut microbiota reshaping. Finally, we focus on the potential effects of post-dieting weight loss in improving gut health and identify current knowledge gaps within the field, including gut-derived peptide hormones and their potential suitability as targets to combat weight regain, and how yoyo dieting and associated changes in the microbiome affect the gut barrier and the enteric nervous system, which largely remain to be determined.
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Affiliation(s)
- Kate Phuong-Nguyen
- Institute for Mental and Physical Health and Clinical Translation (IMPACT), School of Medicine, Deakin University, Waurn Ponds, VIC 3216, Australia
| | - Sean L McGee
- Institute for Mental and Physical Health and Clinical Translation (IMPACT), School of Medicine, Deakin University, Waurn Ponds, VIC 3216, Australia
| | - Kathryn Aston-Mourney
- Institute for Mental and Physical Health and Clinical Translation (IMPACT), School of Medicine, Deakin University, Waurn Ponds, VIC 3216, Australia
| | - Bryony A Mcneill
- Institute for Mental and Physical Health and Clinical Translation (IMPACT), School of Medicine, Deakin University, Waurn Ponds, VIC 3216, Australia
| | - Malik Q Mahmood
- School of Medicine, Deakin University, Waurn Ponds, VIC 3216, Australia
| | - Leni R Rivera
- Institute for Mental and Physical Health and Clinical Translation (IMPACT), School of Medicine, Deakin University, Waurn Ponds, VIC 3216, Australia
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Wilkin K, Evans S, Van Niekerk L, Romano D, Fuller-Tyszkiewicz M, Knowles S, Chesterman S, Raven L, Mikocka-Walus A. Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation. J Clin Psychol Med Settings 2024; 31:245-257. [PMID: 38347385 PMCID: PMC11102374 DOI: 10.1007/s10880-023-09999-5] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 12/15/2023] [Indexed: 05/20/2024]
Abstract
The current study explored perspectives of those with inflammatory bowel disease (IBD) and comorbid anxiety and/or depression on a hybrid acceptance and committment therapy (ACT) intervention, compared to an active control. This qualitative study was nested within a randomized controlled trial (RCT) where an experimental group received an 8-week blended delivery ACTforIBD intervention (four sessions telehealth, four sessions pre-recorded self-directed), while an active control group received a psychoeducation program of similar intensity. Semi-structured interviews were conducted post-intervention and at a 3-month follow-up. Themes were interpreted using reflexive thematic analysis. Twenty individuals participated; ten in each condition. Seven themes were constructed, including three shared themes between groups: I Am Worth Advocating For, Present Moment Is My Biggest Ally, and Ambivalence About Self-Directed Modules. Two themes were identified for the ACTforIBD group: Symptoms Are Going to Happen and Moving Toward Values while two themes identified from the ActiveControl group were: Reset and Refresh and It's Ok to Say No. Acceptance and values modules from ACTforIBD were perceived as useful in reducing psychological distress for those with IBD, while the ActiveControl group felt their program affirmed existing effective coping strategies. Access to external resources for self-directed modules and networking may increase engagement with content long term.
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Affiliation(s)
- Kathryn Wilkin
- School of Psychology, Deakin University, Geelong, Melbourne, VIC, Australia
| | - Subhadra Evans
- School of Psychology, Deakin University, Geelong, Melbourne, VIC, Australia
| | - Leesa Van Niekerk
- School of Psychological Sciences, University of Tasmania, Churchill Avenue, Sandy Bay, Hobart, TAS, Australia
| | - Daniel Romano
- School of Psychology, Deakin University, Geelong, Melbourne, VIC, Australia
| | | | - Simon Knowles
- Department of Psychological Sciences, Swinburne University of Technology, Melbourne, VIC, Australia
| | - Susan Chesterman
- School of Psychology, Deakin University, Geelong, Melbourne, VIC, Australia
| | - Leanne Raven
- Crohn's & Colitis Australia, Melbourne, VIC, Australia
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Norouzkhani N, Faramarzi M, Bahari A, Shirvani JS, Eslami S, Tabesh H. Inflammatory bowel disease patients' perspectives of non-medical needs. BMC Gastroenterol 2024; 24:134. [PMID: 38615013 PMCID: PMC11016217 DOI: 10.1186/s12876-024-03214-x] [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: 09/18/2023] [Accepted: 03/26/2024] [Indexed: 04/15/2024] Open
Abstract
BACKGROUND Inflammatory bowel disease (IBD) imposes a huge burden on the healthcare systems and greatly declines the patient's quality of life. However, there is a paucity of detailed data regarding information and supportive needs as well as sources and methods of obtaining information to control different aspects of the disease from the perspectives of the patients themselves. This study aimed to establish the IBD patients' preferences of informational and supportive needs through Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA). METHODS IBD patients were recruited from different centers. Considering inclusion and exclusion criteria, 521 participants were filled a predefined questionnaire. This questionnaire was prepared through literature review of the recent well-known guidelines on the needs of IBD patients, which was further approved by the experts of IBD area in three rounds of Delphi consensus. It includes 56 items in four sections of informational needs (25), supportive needs (15), sources of information (7), and methods of obtaining information (9). RESULTS In particular, EFA was used to apply data reduction and structure detection. Given that this study tries to identify patterns, structures as well as inter-relationships and classification of the variables, EFA was utilized to simplify presentation of the variables in a way that large amounts of observations transform into fewer ones. Accordingly, the EFA identified five factors out of 25 items in the information needs section, three factors out of 15 items in the supportive needs section, two factors out of 7 items in the information sources section, and two factors out of 9 items in the information presentation methods. Through the CFA, all 4 models were supported by Root Mean Squared Error of Approximation (RMSEA); Incremental Fit Index (IFI); Comparative Fit Index (CFI); Tucker-Lewis Index (TLI); and SRMR. These values were within acceptable ranges, indicating that the twelve factors achieved from EFA were validated. CONCLUSIONS This study introduced a reliable 12-factor model as an efficient tool to comprehensively identify preferences of IBD patients in informational and supportive needs along with sources and methods of obtaining information. An in-depth understanding of the needs of IBD patients facilitates informing and supporting health service provision. It also assists patients in a fundamental way to improve adaptation and increase the quality of life. We suggest that health care providers consider the use of this tool in clinical settings in order to precisely assess its efficacy.
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Affiliation(s)
- Narges Norouzkhani
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, 13944-91388, Iran
| | - Mahbobeh Faramarzi
- Population, Family and Spiritual Health Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran
| | - Ali Bahari
- Department of Internal Medicine, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, 13944- 91388, Iran
| | - Javad Shokri Shirvani
- Department of Internal Medicine, Babol University of Medical Sciences, Babol, 47176-47754, Iran
| | - Saeid Eslami
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, 13944-91388, Iran
| | - Hamed Tabesh
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, 13944-91388, Iran.
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9
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Miglioretto C, Beck E, Lambert K. A scoping review of the dietary information needs of people with inflammatory bowel disease. Nutr Diet 2024; 81:79-93. [PMID: 37806663 DOI: 10.1111/1747-0080.12843] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/03/2023] [Revised: 08/25/2023] [Accepted: 08/31/2023] [Indexed: 10/10/2023]
Abstract
AIMS This review aimed to explore and describe the dietary information needs of individuals with inflammatory bowel disease and sources of information. METHODS A scoping review of English language articles and grey literature, using electronic databases with a predefined search strategy was undertaken. Data were synthesised based on the identified variables (e.g. dietary information needs and sources of dietary information) corresponding to the aims of this review. RESULTS Forty-six studies were included, reporting data from 7557 people with inflammatory bowel disease, of which 58.6% had Crohn's disease and 60.1% were males. Dietary information was rated very important and appeared to be influenced by the disease course. The need to discuss it is heightened at important stages, namely diagnosis and relapse. Dietary information was described broadly and included advice about foods to avoid and dietary advice for symptoms management. No major differences were noted in the dietary information needs of people with Crohn's disease compared to ulcerative colitis. The main sources of dietary information were the gastroenterologist (36%-98%), the internet (9%-60%) and non-dietetic professionals (84.7%). CONCLUSION This review highlights limited literature describing the dietary information needs of people with inflammatory bowel disease. Importantly, the limited access to specialised dietary advice for this cohort is concerning. Future studies are required to explore not only the nuances in the needs of those with active disease and in remission, but to further understand issues of access to specialised dietary advice to provide holistic person-centred care desired by this cohort.
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Affiliation(s)
- Chiara Miglioretto
- School of Medical, Indigenous and Health Sciences, University of Wollongong, Wollongong, New South Wales, Australia
| | - Eleanor Beck
- School of Medical, Indigenous and Health Sciences, University of Wollongong, Wollongong, New South Wales, Australia
- School of Health Sciences, University of New South Wales, Kensington, New South Wales, Australia
| | - Kelly Lambert
- School of Medical, Indigenous and Health Sciences, University of Wollongong, Wollongong, New South Wales, Australia
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10
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Ni Z, Zhu L, Li S, Zhang Y, Zhao R. Characteristics and associated factors of health information-seeking behaviour among patients with inflammatory bowel disease in the digital era: a scoping review. BMC Public Health 2024; 24:307. [PMID: 38279086 PMCID: PMC10821566 DOI: 10.1186/s12889-024-17758-w] [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: 07/07/2023] [Accepted: 01/12/2024] [Indexed: 01/28/2024] Open
Abstract
BACKGROUND Health Information-Seeking Behaviour (HISB) is necessary for self-management and medical decision-making among patients with inflammatory bowel disease (IBD). With the advancement of information technology, health information needs and seeking are reshaped among patients with IBD. This scoping review aims to gain a comprehensive understanding of HISB of people with IBD in the digital age. METHODS This scoping review adhered to Arksey and O'Malley's framework and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews frameworks (PRISMA-ScR). A comprehensive literature search was conducted in PubMed, Embase, Web of Science, PsycINFO, CINAHL, and three Chinese databases from January 1, 2010 to April 10, 2023. Employing both deductive and inductive content analysis, we scrutinized studies using Wilson's model. RESULTS In total, 56 articles were selected. Within the information dimension of HISB among patients with IBD, treatment-related information, particularly medication-related information, was identified as the most critical information need. Other information requirements included basic IBD-related information, daily life and self-management, sexual and reproductive health, and other needs. In the sources dimension, of the eight common sources of information, the internet was the most frequently mentioned source of information, while face-to-face communication with healthcare professionals was the preferred source. Associated factors were categorized into six categories: demographic characteristics, psychological aspects, role-related or interpersonal traits, environmental aspects, source-related characteristics, and disease-related factors. Moreover, the results showed five types of HISB among people with IBD, including active searching, ongoing searching, passive attention, passive searching, and avoid seeking. Notably, active searching, especially social information seeking, appeared to be the predominant common type of HISB among people with IBD in the digital era. CONCLUSION Information needs and sources for patients with IBD exhibit variability, and their health information-seeking behaviour is influenced by a combination of diverse factors, including resource-related and individual factors. Future research should focus on the longitudinal changes in HISB among patients with IBD. Moreover, efforts should be made to develop information resources that are both convenient and provide credible information services, although the development of such resources requires further investigation and evaluation.
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Affiliation(s)
- Zijun Ni
- Nursing Department, The Second Affiliated Hospital of Zhejiang University School of Medicine, No.88 Jiefang Road, Hangzhou, 310009, China
- Department of Nursing, School of Medicine, Zhejiang University, Hangzhou, China
| | - Lingli Zhu
- Nursing Department, The Second Affiliated Hospital of Zhejiang University School of Medicine, No.88 Jiefang Road, Hangzhou, 310009, China
- Department of Nursing, School of Medicine, Zhejiang University, Hangzhou, China
| | - Shuyan Li
- Nursing Department, The Second Affiliated Hospital of Zhejiang University School of Medicine, No.88 Jiefang Road, Hangzhou, 310009, China
| | - Yuping Zhang
- Nursing Department, The Second Affiliated Hospital of Zhejiang University School of Medicine, No.88 Jiefang Road, Hangzhou, 310009, China
| | - Ruiyi Zhao
- Nursing Department, The Second Affiliated Hospital of Zhejiang University School of Medicine, No.88 Jiefang Road, Hangzhou, 310009, China.
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Norouzkhani N, Bahari A, Shirvani JS, Faramarzi M, Eslami S, Tabesh H. Expert opinions on informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease: a Delphi consensus study. Front Psychol 2023; 14:1224279. [PMID: 37809295 PMCID: PMC10557489 DOI: 10.3389/fpsyg.2023.1224279] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/17/2023] [Accepted: 08/23/2023] [Indexed: 10/10/2023] Open
Abstract
Background The present study introduces informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease (IBD) through a three-round Expert Delphi Consensus Opinions method. Methods According to our previous scoping review, important items in the area of informational and supportive needs and sources of obtaining information were elucidated. After omitting duplicates, 56 items in informational needs, 36 items in supportive needs, and 36 items in sources of obtaining information were retrieved. Both open- and close-ended questions were designed for each category in the form of three questionnaires. The questionnaires were sent to selected experts from different specialties. Experts responded to the questions in the first round. Based on the feedback, questions were modified and sent back to the experts in the second round. This procedure was repeated up to the third round. Results In the first round, five items from informational needs, one item from supportive needs, and seven items from sources of obtaining information were identified as unimportant and omitted. Moreover, two extra items were proposed by the experts, which were added to the informational needs category. In the second round, seven, three, and seven items from informational needs, supportive needs, and sources of obtaining information were omitted due to the items being unimportant. In the third round, all the included items gained scores equal to or greater than the average and were identified as important. Kendall coordination coefficient W was calculated to be 0.344 for information needs, 0.330 for supportive needs, and 0.325 for sources of obtaining information, indicating a fair level of agreement between experts. Conclusions Out of 128 items in the first round, the omission of 30 items and the addition of two items generated a 100-item questionnaire for three sections of informational needs, supportive needs, and sources of obtaining information with a high level of convergence between experts' viewpoints.
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Affiliation(s)
- Narges Norouzkhani
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Ali Bahari
- Department of Internal Medicine, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
| | | | - Mahbobeh Faramarzi
- Department of General Courses, Population, Family and Spiritual Health Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran
| | - Saeid Eslami
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
- Pharmaceutical Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Hamed Tabesh
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
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Ahola Kohut S, Keefer L. Building a Self-Management Toolkit for Patients with Pediatric Inflammatory Bowel Disease: Introducing the resilience 5. Gastroenterol Clin North Am 2023; 52:599-608. [PMID: 37543403 DOI: 10.1016/j.gtc.2023.05.005] [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
Transition from pediatric to adult health care is a complex process that calls for complex interventions and collaboration between health care teams and families. However, many inflammatory bowel disease (IBD) clinical care teams do not have the resources to implement rigorous transition programs for youth. This review provides a description of the Resilience5: self-efficacy, disease acceptance, self-regulation, optimism, and social support. The Resilience5 represents teachable skills to support IBD self-management, offset disease interfering behaviors, and build resilience in adolescents and young adults transitioning to adult health care systems. These skills can also be encouraged and reinforced during routine IBD clinical care.
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Affiliation(s)
- Sara Ahola Kohut
- Department of Gastroenterology, Hepatology, and Nutrition, Hospital for Sick Children, 555 University Avenue, Toronto, Onatrio, Canada.
| | - Laurie Keefer
- Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Place, New York, NY, USA
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Norouzkhani N, Faramarzi M, Ghodousi Moghadam S, Karimi MA, Shokri Shirvani J, Bahari A, ShojaeiBaghini M, Eslami S, Tabesh H. Identification of the informational and supportive needs of patients diagnosed with inflammatory bowel disease: a scoping review. Front Psychol 2023; 14:1055449. [PMID: 37251032 PMCID: PMC10211349 DOI: 10.3389/fpsyg.2023.1055449] [Citation(s) in RCA: 9] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/01/2022] [Accepted: 04/11/2023] [Indexed: 05/31/2023] Open
Abstract
Background Inflammatory Bowel Disease (IBD) affects the quality of life. Patient education and support needs are crucial components of comprehensive chronic illness care. The main purposes of this review were to (i) explore the informational and supportive needs of these patients to improve the quality of life in the existing literature and (ii) identify the gaps related to the needs of the patients in articles. Methods The scoping review is based on the Daudt methodological framework, a modified version of Arksey and O'Malley. Electronic databases were extensively searched from January 01, 2000 to April 30, 2022. Four electronic databases (PubMed/Medline, CINAHL, APA PsycInfo, Psychology and Behavioral Sciences Collection, APA PsycArticles, and ProQuest) were searched using controlled vocabulary, and specific keywords. The searched terms were matched to each database. We manually searched two key journals, namely the Journal of Inflammatory Bowel Disease and the Journal of Crohn's and Colitis. Results In the review, 75 studies on the assessment of the information and support needs of patients with IBD were reviewed. In this regard, 62 and 53 studies were regarding information needs and support needs, respectively. Most of the information needs of patients with IBD reported in the studies were related to diet needs, and educational needs were the most essential support needs. Conclusions Health policymakers and managers can develop care and educational programs related to this disease in health centers according to the needs of the patients. Health professionals, especially gastroenterologists, are the primary referral sources for information on patients. Therefore, gastroenterologists can take the lead in planning and educating the patients and sharing their decisions. Systematic review registration OSF, https://doi.org/10.17605/OSF.IO/3MWGJ.
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Affiliation(s)
- Narges Norouzkhani
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Mahbobeh Faramarzi
- Fatemeh Zahra Infertility and Reproductive Health Research Center, Babol University of Medical Sciences, Babol, Iran
| | - Sara Ghodousi Moghadam
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
- Technology, Neyshabur University of Medical Sciences, Neyshabur, Iran
| | - Mohammad Amin Karimi
- School of Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran
| | | | - Ali Bahari
- Department of Internal Medicine, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
| | - Mahdie ShojaeiBaghini
- Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran
| | - Saeid Eslami
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
- Pharmaceutical Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
- Department of Medical Informatics, Amsterdam UMC, University of Amsterdam, Amsterdam, Netherlands
| | - Hamed Tabesh
- Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
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Chen J, Geng J, Wang J, Wu Z, Fu T, Sun Y, Chen X, Wang X, Hesketh T. Associations between inflammatory bowel disease, social isolation, and mortality: evidence from a longitudinal cohort study. Therap Adv Gastroenterol 2022; 15:17562848221127474. [PMID: 36199290 PMCID: PMC9528002 DOI: 10.1177/17562848221127474] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/16/2022] [Accepted: 09/02/2022] [Indexed: 02/04/2023] Open
Abstract
Background Social well-being of patients with inflammatory bowel disease (IBD) is garnering increased attention; however, the impact of social isolation remained poorly understood. Objectives We investigated the joint association of social isolation and IBD with premature deaths to articulate the profound impact of social isolation in IBD prognosis. Design Longitudinal cohort study. Methods We leveraged data of 486,014 participants from UK Biobank (including 5791 with IBD), the mean follow-up was 11.84 years. Diagnoses of IBD and its subtypes of Crohn's disease (CD) and ulcerative colitis were confirmed with the combination of self-reporting, primary care, and hospital admission data. Social isolation was measured by the frequency of meeting family/friends, leisure and social activity, and communal/solitary living. Mortality was ascertained through data linkage with national death registries. Multivariable Cox regression models were conducted to estimate hazard ratio (HR) and 95% confidence interval (CI). Results Comparing non-isolated non-IBD population, the HRs of mortality in patients with IBD who were socially isolated or not were 2.06 (95% CI: 1.69, 2.51) and 1.33 (95% CI: 1.21, 1.45), respectively. The excess risk of death was observed in socially isolated patients with IBD (HR = 1.69, 95% CI: 1.36, 2.11), particularly among patients with CD (HR = 2.06, 95% CI: 1.48, 2.87) than their non-isolated counterparts. Data from subgroup and sensitivity analyses were consistent with those from the primary analysis. Conclusion Socially isolated patients with IBD especially CD increases the risk of premature death. Preventing social isolation might be a promising approach to improve IBD prognosis. Plain language summary Social isolation as a risk factor to excess mortality in patients with IBD: findings from a longitudinal cohort study Social isolation is prevalent in individuals with inflammatory bowel disease (IBD); however, its potential health impact on IBD prognosis has not been quantitatively well examined. In this study, we explored the association between social isolation and subsequent death, with the focus on patients with IBD.We leveraged data of 486,014 participants (including 5791 with IBD) from UK Biobank. We measured social isolation by the frequency of meeting family/friends, leisure and social activity, and communal/solitary living. We ascertained patients with IBD and mortality by self-report data and data linkage with primary care, hospital, and national death registry. Participants were followed up for a mean of 11.84 years.Comparing non-isolated non-IBD population, we found that patients with IBD who were deemed as socially isolated or not were associated with a 2.06-fold (1.69-2.51) and 1.33-fold (1.21-1.45) risk of death, respectively. Furthermore, we revealed that socially isolated patients with IBD and subtype Crohn's disease (CD) had 69% (36-111%) and 106% (48-187%) increased risk of premature death compared with their non-isolated counterparts, respectively.Social isolation merits attention in IBD care and management. Patients with IBD, especially CD, are more likely to be affected when socially isolated. Targeted social support strategies ought to be devised to improve IBD prognosis.
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Affiliation(s)
- Jie Chen
- Department of Gastroenterology, The Third Xiangya Hospital of Central South University, Changsha, China
- Center for Global Health, Zhejiang University, Hangzhou, China
| | - Jiawei Geng
- Center for Global Health, Zhejiang University, Hangzhou, China
| | - Jiayi Wang
- Department of Gastroenterology, The Third Xiangya Hospital of Central South University, Changsha, China
| | - Zhenhua Wu
- Zhejiang Provincial Hospital of Chinese Medicine, Hangzhou, China
| | - Tian Fu
- Department of Gastroenterology, The Third Xiangya Hospital of Central South University, Changsha, China
| | - Yuhao Sun
- Center for Global Health, Zhejiang University, Hangzhou, China
| | - Xuejie Chen
- Department of Gastroenterology, The Third Xiangya Hospital of Central South University, Changsha, China
| | - Xiaoyan Wang
- Department of Gastroenterology, The Third Xiangya Hospital, Central South University, 138 Tongzipo Road, Changsha, Hunan 410013, P.R. China
| | - Therese Hesketh
- Center for Global Health, Zhejiang University, Hangzhou, China
- Institute for Global Health, University College London, UK
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Graffigna G, Bosio C, Pagnini F, Volpato E, Previtali E, Leone S, D'Amico F, Armuzzi A, Danese S. Promoting psycho-social wellbeing for engaging inflammatory bowel disease patients in their care: an Italian consensus statement. BMC Psychol 2021; 9:186. [PMID: 34839834 PMCID: PMC8628380 DOI: 10.1186/s40359-021-00692-6] [Citation(s) in RCA: 16] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/03/2021] [Accepted: 11/11/2021] [Indexed: 12/11/2022] Open
Abstract
BACKGROUND Inflammatory bowel diseases (IBD) are remitting and relapsing diseases that mainly interest the gastrointestinal tract. IBD is associated with a condition of psycho-social discomfort that deeply compromises the quality of life and the competence of patient to be fully engaged in their self-management. As a consequence, effective care of IBD patients should include not only medical but also psychological support in order to improve patients' wellbeing. Although this, to date there is no standardized approach to promote psychological wellbeing of IBD patients in order to improve the perception of the quality of the care. To fill this gap, a consensus conference has been organized in order to define the psychosocial needs of IBD patients and to promote their engagement in daily clinical practice. This paper describes the process implemented and illustrates the recommendations deriving from it, which focus on the importance of a multidisciplinary approach in IBD management. RESULTS The consensus conference has been organized in three phases: (1) literature review about life experiences, engagement, and psychosocial needs of IBD patients; (2) workshops with IBD experts and patients' representatives; (3) drafting of statements and voting. Seventy-three participants were involved in the consensus conference, and sixteen statements have been voted and approved during the consensus process. CONCLUSIONS The main conclusion is the necessity of the early detection of - and, in case of need, intervention on- psycho-social needs of patients in order to achieve patient involvement in IBD care.
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Affiliation(s)
| | - Caterina Bosio
- EngageMindsHUB, Università Cattolica del Sacro Cuore Milan, Milan, Italy.
| | - Francesco Pagnini
- EngageMindsHUB, Università Cattolica del Sacro Cuore Milan, Milan, Italy
| | - Eleonora Volpato
- EngageMindsHUB, Università Cattolica del Sacro Cuore Milan, Milan, Italy
| | | | | | - Ferdinando D'Amico
- Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, Milan, Italy
| | | | - Silvio Danese
- Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, Milan, Italy
- IBD Center, Humanitas Research Hospital- IRCCS, Rozzano, Milan, Italy
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