Patient Education in Inflammatory Bowel Disease: A Patient-Centred, Mixed Methodology Study

McDermott, Edel; Healy, Gerard M.; Mullen, Georgina; Keegan, Denise; Byrne, Kathryn R.; Guerandel, Allys; Forry, M.; Moloney, Jenny; Doherty, Glen; Cullen, G.; Malone, Kevin; Mulcahy, Hugh

doi:10.1093/ecco-jcc/jjx175

Cited by 29 publications

(36 citation statements)

References 21 publications

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“…A Spanish study found that 84% of patients showed an interest in IBD websites supported by the physicians of their referral centre [14]. Studies from Ireland and the UK showed that IBD patients preferred getting face-to-face information from specialist doctors or nurses rather than the internet [15, 16]. In our study, verbal teaching from gastroenterologists, communication with other IBD patients and online searches were the top three information sources for IBD patients, and this finding is consistent with those from previous studies.…”

Section: Discussionmentioning

confidence: 99%

“…A study from Spain suggested that IBD patients expected to be fully informed about their social and work rights, cancer and mortality risk and research trials [19]. Another study in Ireland showed that IBD patients were most eager to obtain knowledge on medication, ‘what to expect in the future’, living with IBD, and diet [15]. In addition, a study in Canada found that long-term prognosis and guidance on diet, topics that were regarded as important, were the least adequately addressed [20].…”

Section: Discussionmentioning

confidence: 99%

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Internet and WeChat used by patients with Crohn’s disease in China: a multi-center questionnaire survey

et al. 2019

BMC Gastroenterol

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Background Currently, WeChat is widely used in disease education for patients with Crohn’s disease (CD) in China. It is beneficial for the patients to actively engage in their disease management. Methods In this study, we examined the source and expectations of disease information for Chinese CD patients, analysing the content of popular WeChat public accounts and their potential association with medication adherence. Results Between November 24th, 2017 and April 10th, 2018, online questionnaires were sent to CD patients from eight different large urban hospitals in China. In all, 436 patients with CD were surveyed, and 342 patients responded. Patients most frequently visited Baidu (65%) , WeChat (61%) and medical websites such as Haodaifu (35%) when searching for IBD-related information. Among ten WeChat IBD public accounts, the China Crohn’s and Colitis Foundation (CCCF) (73%), “ IBD Academic Officer ” (21%) and “ IBD in love ” (21%) were the most popular. CD patients were most interested in information from the internet about diet and day-to-day health-related living with IBD (83%), an introduction to the disease (80%), and medication advances and side effects (80%). The correlation between the information provided by the top five WeChat public accounts and patients’ expectations was low. Additionally, most patients (64%) had greater confidence in overcoming the disease after learning about CD through their internet searches. Medical adherence was also related to internet access and income ( p < 0.05). Conclusions WeChat has become a major source of information for IBD education in China, but the content of WeChat didn’t fully meet patients’ expectations. Therefore, future initiatives should aim to provide high-quality information that based on patients’ demands.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Internet and WeChat used by patients with Crohn’s disease in China: a multi-center questionnaire survey

et al. 2019

BMC Gastroenterol

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“…Patient-centered care, patient participation, and shared decision-making are important in the active partnership that patients have in their care [67]. However, without relevant information that is tailored to individual needs, patients cannot make informed choices or participate in decision-making and/or self-management [67,68]. This review demonstrated that tailored patient education plus counseling resulted in improved disease severity and control, inhaler usage, and technique for patients with asthma.…”

Section: Discussionmentioning

confidence: 99%

A Role for Primary Care Pharmacists in the Management of Inflammatory Bowel Disease? Lessons from Chronic Disease: A Systematic Review

et al. 2020

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Background and aims: Chronic disease, particularly inflammatory bowel disease (IBD), requires a multifaceted approach to managing patients, but it is apparent that primary care pharmacists are being underutilized. To demonstrate the benefits of pharmacist interventions in primary care, a systematic review was conducted of interventions in asthma and type 2 diabetes where pharmacists have a defined role in chronic disease management. We also explored potential opportunities for primary care pharmacists to deliver tailored care to patients with inflammatory bowel disease. Methods: The search strategy retrieved original research articles from seven databases; eligible articles were assessed for inclusion. Quality appraisal was performed independently by two reviewers. Results: Thirty-seven included studies were grouped into four categories of interventions: education/counseling (43%), medication management (34%), monitoring/follow-up (17%), and screening/risk prevention (6%). Education plus counseling was reported as the main intervention delivered by pharmacists. Three measurable outcomes were identified: clinical, humanistic (e.g., quality of life), and economic. Clinical outcomes (63%) were reported more commonly than humanistic (26%) and economic (11%) outcomes. Pharmacist interventions led to statistically significant improvements in control of disease, severity, and medication adherence, as well as improvements in overall patient satisfaction, quality of life among patients with asthma and type 2 diabetes. Conclusion: As one of the most accessible sources of primary health care, pharmacists are well-placed to minimize the impact of chronic diseases on patients and communities. Evidence suggests there are opportunities for primary care pharmacists to play a more active role in the management of chronic diseases such as IBD.

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“…disability, nancial aid management, tax bene ts…), work right, risk of cancer and/or of death. They prefer to have the opportunity to talk to the Gastroenterologist than to the General Practitioner or the Surgeon, consider a rate of satisfaction of 96% (57,58). In this life phase, a series of questions are also related to treatment failure and response with rst-line and second-line biologic therapy with these two anti-TNFα agents (59).…”

Section: Needs Of Informationmentioning

confidence: 99%

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

Volpato

Bosio

Previtali³

et al. 2020

Preprint

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Background: The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working and interpersonal.Aims: In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement and the psychosocial and medical needs of people affected by IBD across the lifecycle. Methods: Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo.Results: We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detect the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style and support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kind of challenges across the life cycle. Conclusions: The literature shows the relevance of organising a flexible, personalised health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

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Patient Education in Inflammatory Bowel Disease: A Patient-Centred, Mixed Methodology Study

Cited by 29 publications

References 21 publications

Internet and WeChat used by patients with Crohn’s disease in China: a multi-center questionnaire survey

Internet and WeChat used by patients with Crohn’s disease in China: a multi-center questionnaire survey

A Role for Primary Care Pharmacists in the Management of Inflammatory Bowel Disease? Lessons from Chronic Disease: A Systematic Review

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

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