Patient education interventions for the management of inflammatory bowel disease

BACKGROUND: Inflammatory bowel disease (IBD) is a life‐long condition for which currently there is no cure. Patient educational interventions deliver structured information to their recipients. Evidence suggests patient education can have positive effects in other chronic diseases. OBJECTIVES: To identify the different types of educational interventions, how they are delivered, and to determine their effectiveness and safety in people with IBD. SEARCH METHODS: On 27 November 2022, we searched CENTRAL, Embase, MEDLINE, ClinicalTrials.gov, and WHO ICTRP with no limitations to language, date, document type, or publication status. Any type of formal or informal educational intervention, lasting for any time, that had content focused directly on knowledge about IBD or skills needed for direct management of IBD or its symptoms was included. Delivery methods included face‐to‐face or remote educational sessions, workshops, guided study via the use of printed or online materials, the use of mobile applications, or any other method that delivers information to patients. SELECTION CRITERIA: All published, unpublished and ongoing randomised control trials (RCTs) that compare educational interventions targeted at people with IBD to any other type of intervention or no intervention. DATA COLLECTION AND ANALYSIS: Two review authors independently conducted data extraction and risk of bias assessment of the included studies. We analysed data using Review Manager Web. We expressed dichotomous and continuous outcomes as risk ratios (RRs) and mean differences (MDs) with 95% confidence intervals (CIs). We assessed the certainty of the evidence using GRADE methodology. MAIN RESULTS: We included 14 studies with a total of 2708 randomised participants, aged 11 to 75 years. Two studies examined populations who all had ulcerative colitis (UC); the remaining studies examined a mix of IBD patients (UC and Crohn's disease). Studies considered a range of disease activity states. The length of the interventions ranged from 30 minutes to 12 months. Education was provided in the form of in‐person workshops/lectures, and remotely via printed materials or multimedia, smartphones and internet learning. Thirteen studies compared patient education interventions plus standard care against standard care alone. The interventions included seminars, information booklets, text messages, e‐learning, a multi professional group‐based programme, guidebooks, a staff‐delivered programme based on an illustrated book, a standardised programme followed by group session, lectures alternating with group therapy, educational sessions based on an IBD guidebook, internet blog access and text messages, a structured education programme, and interactive videos. Risk of bias findings were concerning in all judgement areas across all studies. No single study was free of unclear or high of bias judgements. Reporting of most outcomes in a homogeneous fashion was limited, with quality of life at study end reported most commonly in six of the 14 studies which allowed for meta‐analysis, with all other outcomes reported in a more heterogeneous manner that limited wider analysis. Two studies provided data on disease activity. There was no clear difference in disease activity when patient education (n = 277) combined with standard care was compared to standard care (n = 202). Patient education combined with standard care is probably equivalent to standard care in reducing disease activity in patients with IBD (standardised mean difference (SMD) ‐0.03, 95% CI ‐0.25 to 0.20), moderate‐certainty evidence. Two studies provided continuous data on flare‐up/relapse. There was no clear difference for flare‐ups or relapse when patient education (n = 515) combined with standard care was compared to standard care (n = 507), as a continuous outcome. Patient education combined with standard care is probably equivalent to standard care in reducing flare‐ups or relapse in patients with IBD (MD ‐0.00, 95% CI ‐0.06 to 0.05; moderate‐certainty evidence). Three studies provided dichotomous data on flare‐up/relapse. The evidence is very uncertain on whether patient education combined with standard care (n = 157) is different to standard care (n = 150) in reducing flare‐ups or relapse in patients with IBD (RR 0.94, 95% CI 0.41 to 2.18; very low‐certainty evidence). Six studies provided data on quality of life. There was no clear difference in quality of life when patient education combined with standard care (n = 721) was compared to standard care (n = 643). Patient education combined with standard care is probably equivalent to standard care in improving quality of life in patients with IBD (SMD 0.08, 95% CI ‐0.03 to 0.18; moderate‐certainty evidence). The included studies did not report major differences on healthcare access. Medication adherence, patient knowledge and change in quality of life showed conflicting results that varied between no major differences and differences in favour of the educational interventions. Only five studies reported on adverse events. Four reported zero total adverse events and one reported one case of breast cancer and two cases of surgery in their interventions groups, and zero adverse events in their control group. Two studies compared delivery methods of patient education, specifically: web‐based patient education interventions versus colour‐printed books or text messages; and one study compared frequency of patient education, specifically: weekly educational text messages versus once every other week educational text messages. These did not show major differences for disease activity and quality of life. Other outcomes were not reported. AUTHORS' CONCLUSIONS: The ways in which patient educational support surrounding IBD may impact on disease outcomes is complex. There is evidence that education added to standard care is probably of no benefit to disease activity or quality of life when compared with standard care, and may be of no benefit for occurrence of relapse when compared with standard care. However, as there was a paucity of specific information regarding the components of education or standard care, the utility of these findings is questionable. Further research on the impact of education on our primary outcomes of disease activity, flare‐ups/relapse and quality of life is probably not indicated. However, further research is necessary, which should focus on reporting details of the educational interventions and study outcomes that educational interventions could be directly targeted to address, such as healthcare access and medication adherence. These should be informed by direct engagement with stakeholders and people affected by Crohn's and colitis.