A web-based, peer-supported self-management intervention to reduce distress in relatives of people with psychosis or bipolar disorder: the REACT RCT

Abstract

<jats:sec id="abs1-1"> <jats:title>Background</jats:title> <jats:p>Relatives caring for people with severe mental health problems find information and emotional support hard to access. Online support for self-management offers a potential solution.</jats:p> </jats:sec> <jats:sec id="abs1-2"> <jats:title>Objective</jats:title> <jats:p>The objective was to determine the clinical effectiveness and cost-effectiveness of an online supported self-management tool for relatives: the Relatives’ Education And Coping Toolkit (REACT).</jats:p> </jats:sec> <jats:sec id="abs1-3"> <jats:title>Design and setting</jats:title> <jats:p>This was a primarily online (UK), single-blind, randomised controlled trial, comparing REACT plus a resource directory and treatment as usual with the resource directory and treatment as usual only, by measuring user distress and other well-being measures at baseline and at 12 and 24 weeks.</jats:p> </jats:sec> <jats:sec id="abs1-4"> <jats:title>Participants</jats:title> <jats:p>A total of 800 relatives of people with severe mental health problems across the UK took part; relatives who were aged ≥ 16 years, were experiencing high levels of distress, had access to the internet and were actively seeking help were recruited.</jats:p> </jats:sec> <jats:sec id="abs1-5"> <jats:title>Intervention</jats:title> <jats:p>REACT comprised 12 psychoeducation modules, peer support through a group forum, confidential messaging and a comprehensive resource directory of national support. Trained relatives moderated the forum and responded to messages.</jats:p> </jats:sec> <jats:sec id="abs1-6"> <jats:title>Main outcome measure</jats:title> <jats:p>The main outcome was the level of participants’ distress, as measured by the General Health Questionnaire-28 items.</jats:p> </jats:sec> <jats:sec id="abs1-7"> <jats:title>Results</jats:title> <jats:p>Various online and offline strategies, including social media, directed potential participants to the website. Participants were randomised to one of two arms: REACT plus the resource directory (<jats:italic>n</jats:italic> = 399) or the resource directory only (<jats:italic>n</jats:italic> = 401). Retention at 24 weeks was 75% (REACT arm, <jats:italic>n</jats:italic> = 292; resource directory-only arm, <jats:italic>n</jats:italic> = 307). The mean scores for the General Health Questionnaire-28 items reduced substantially across both arms over 24 weeks, from 40.2 (standard deviation 14.3) to 30.5 (standard deviation 15.6), with no significant difference between arms (mean difference –1.39, 95% confidence interval –3.60 to 0.83; <jats:italic>p</jats:italic> = 0.22). At 12 weeks, the General Health Questionnaire-28 items scores were lower in the REACT arm than in the resource directory-only arm (–2.08, 95% confidence interval –4.14 to –0.03; <jats:italic>p</jats:italic> = 0.027), but this finding is likely to be of limited clinical significance. Accounting for missing data, which were associated with higher distress in the REACT arm (0.33, 95% confidence interval –0.27 to 0.93; <jats:italic>p</jats:italic> = 0.279), in a longitudinal model, there was no significant difference between arms over 24 weeks (–0.56, 95% confidence interval –2.34 to 1.22; <jats:italic>p</jats:italic> = 0.51). REACT cost £142.95 per participant to design and deliver (£62.27 for delivery only), compared with £0.84 for the resource directory only. A health economic analysis of NHS, health and Personal Social Services outcomes found that REACT has higher costs (£286.77), slightly better General Health Questionnaire-28 items scores (incremental General Health Questionnaire-28 items score adjusted for baseline, age and gender: –1.152, 95% confidence interval –3.370 to 1.065) and slightly lower quality-adjusted life-year gains than the resource directory only; none of these differences was statistically significant. The median time spent online was 50.8 minutes (interquartile range 12.4–172.1 minutes) for REACT, with no significant association with outcome. Participants reported finding REACT a safe, confidential environment (96%) and reported feeling supported by the forum (89%) and the REACT supporters (86%). No serious adverse events were reported.</jats:p> </jats:sec> <jats:sec id="abs1-8"> <jats:title>Limitations</jats:title> <jats:p>The sample comprised predominantly white British females, 25% of participants were lost to follow-up and dropout in the REACT arm was not random.</jats:p> </jats:sec> <jats:sec id="abs1-9"> <jats:title>Conclusions</jats:title> <jats:p>An online self-management support toolkit with a moderated group forum is acceptable to relatives and, compared with face-to-face programmes, offers inexpensive, safe delivery of National Institute for Health and Care Excellence-recommended support to engage relatives as peers in care delivery. However, currently, REACT plus the resource directory is no more effective at reducing relatives’ distress than the resource directory only.</jats:p> </jats:sec> <jats:sec id="abs1-10"> <jats:title>Future work</jats:title> <jats:p>Further research in improving the effectiveness of online carer support interventions is required.</jats:p> </jats:sec> <jats:sec id="abs1-11"> <jats:title>Trial registration</jats:title> <jats:p>Current Controlled Trials ISRCTN72019945.</jats:p> </jats:sec> <jats:sec id="abs1-12"> <jats:title>Funding</jats:title> <jats:p>This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in <jats:italic>Health Technology Assessment</jats:italic>; Vol. 24, No. 32. See the NIHR Journals Library website for further project information.</jats:p> </jats:sec>

Community‐based social interventions for people with severe mental illness: a systematic review and narrative synthesis of recent evidence

“…In total, 11 papers assessing family interventions were identified, of which four reported on quantitative studies [84][85][86][87] , three of which were RCTs 84,85,87 , and one described a programme development and implementation 86 . One study was qualitative in design 88 , and the remaining six employed mixed methods [89][90][91][92][93][94] .…”

“…Of the mixed methods papers, two reported on the EOLAS (Eolas is the Irish word for knowledge) family information programme study 90,91 , and two on the REACT (Relatives' Education And Coping Toolkit) RCT 92,93 . Two studies were conducted in the UK 89,92,93 , and one each in India 84 , Iran 86 , Ireland 90,91 Spain and Portugal 85 , the US 87 and Vietnam 94 . The mean Kmet score for quantitative papers was 75 and ranged from 100 92,93 (one study) to 45 90 .…”

“…Two studies were conducted in the UK 89,92,93 , and one each in India 84 , Iran 86 , Ireland 90,91 Spain and Portugal 85 , the US 87 and Vietnam 94 . The mean Kmet score for quantitative papers was 75 and ranged from 100 92,93 (one study) to 45 90 . The mean score for qualitative papers was 59 and ranged from 85 88 to 45 94 .…”

“…The evaluated family interventions were varied, although all included psychoeducational elements. A number also included cognitive behavioral strategies 85,87,89,92,93 . The interventions were typically delivered in secondary or tertiary community care settings, mostly outpatient or community clinics [84][85][86][87][89][90][91] .…”

Investigation on the Status Quo of Self-Health Management of Patients with Bipolar Disorder and Analysis of Influencing Factors

“…Studies have found that personalized education combined with peer support can improve the patient's condition and enhance their overall functions and self-management capabilities [10,11], but this conclusion remains to be verified. Self-health management refers to the whole process of analyzing, predicting, and preventing one's own health information and risk factors.…”