Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
Clinical Trials Research Centre, Department of Biostatistics, University of Liverpool (a member of Liverpool Health Partners), Liverpool, UK.
Health Technol Assess. 2020 Jun;24(32):1-142. doi: 10.3310/hta24320.
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.
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).
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.
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.
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.
The main outcome was the level of participants' distress, as measured by the General Health Questionnaire-28 items.
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 ( = 399) or the resource directory only ( = 401). Retention at 24 weeks was 75% (REACT arm, = 292; resource directory-only arm, = 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; = 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; = 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; = 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; = 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.
The sample comprised predominantly white British females, 25% of participants were lost to follow-up and dropout in the REACT arm was not random.
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.
Further research in improving the effectiveness of online carer support interventions is required.
Current Controlled Trials ISRCTN72019945.
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in ; Vol. 24, No. 32. See the NIHR Journals Library website for further project information.
照顾严重精神健康问题患者的亲属很难获得信息和情感支持。在线自我管理支持为他们提供了潜在的解决方案。
旨在确定在线支持自我管理工具对亲属的临床效果和成本效益：亲属教育和应对工具包（REACT）。
这是一项主要在英国进行的在线（英国）、单盲、随机对照试验，通过在基线和 12 周及 24 周时测量用户的痛苦和其他福祉指标，比较了 REACT 加资源目录与仅资源目录和常规治疗。
共有 800 名英国严重精神健康问题患者的亲属参与；招募的亲属年龄≥16 岁，处于高压力状态，能够使用互联网并积极寻求帮助。
REACT 包括 12 个心理教育模块、通过小组论坛提供的同伴支持、机密消息传递和全面的国家支持资源目录。经过培训的亲属主持论坛并回复消息。
主要结局指标是参与者痛苦程度的衡量，使用一般健康问卷-28 项（General Health Questionnaire-28 items）进行衡量。
各种在线和离线策略，包括社交媒体，将潜在参与者引导到该网站。参与者被随机分配到两个臂之一：REACT 加资源目录（n=399）或仅资源目录（n=401）。24 周时的保留率为 75%（REACT 臂，n=292；资源目录仅臂，n=307）。在 24 周内，两个臂的一般健康问卷-28 项的平均得分都显著降低，从 40.2（标准差 14.3）降至 30.5（标准差 15.6），两个臂之间没有显著差异（平均差异-1.39，95%置信区间-3.60 至 0.83；=0.22）。在 12 周时，REACT 臂的一般健康问卷-28 项得分低于仅资源目录臂（-2.08，95%置信区间-4.14 至-0.03；=0.027），但这种发现可能具有有限的临床意义。考虑到与 REACT 臂中较高痛苦相关的缺失数据（0.33，95%置信区间-0.27 至 0.93；=0.279），在纵向模型中，24 周内两个臂之间没有显著差异（-0.56，95%置信区间-2.34 至 1.22；=0.51）。REACT 的设计和交付费用为每位参与者 142.95 英镑（仅交付费用为 62.27 英镑），而仅资源目录的费用为 0.84 英镑。对 NHS、卫生和个人社会服务结果的健康经济分析发现，REACT 的成本更高（286.77 英镑），一般健康问卷-28 项得分略好（调整基线、年龄和性别后的增量一般健康问卷-28 项得分：-1.152，95%置信区间-3.370 至 1.065），而质量调整生命年的收益略低，仅资源目录；这些差异均无统计学意义。REACT 的在线时间中位数为 50.8 分钟（四分位距 12.4-172.1 分钟），与结果无显著关联。参与者报告称，他们发现 REACT 是一个安全、保密的环境（96%），并报告说他们从论坛（89%）和 REACT 支持者（86%）那里得到了支持。没有报告严重不良事件。
样本主要由白种英国女性组成，25%的参与者失访，REACT 臂的辍学不是随机的。
带有经过培训的 moderators 的在线自我管理支持工具包对于亲属来说是可以接受的，与面对面的计划相比，它以低廉的价格、安全的方式提供了国家卫生保健卓越研究所推荐的支持，使亲属能够作为同伴参与护理提供。然而，目前，REACT 加资源目录在减轻亲属痛苦方面并不比仅资源目录更有效。
需要进一步研究如何提高在线护理人员支持干预措施的效果。
当前对照试验 ISRCTN72019945。
该项目由英国国家卫生研究院（NIHR）健康技术评估计划资助，将在 ；第 24 卷，第 32 期全文发表。有关该项目的更多信息，请访问 NIHR 期刊库网站。
