Clinical effectiveness of a web-based peer-supported self-management intervention for relatives of people with psychosis or bipolar (REACT): online, observer-blind, randomised controlled superiority trial.

BACKGROUND: The Relatives Education And Coping Toolkit (REACT) is an online supported self-management toolkit for relatives of people with psychosis or bipolar designed to improve access to NICE recommended information and emotional support. AIMS: Our aim was to determine clinical and cost-effectiveness of REACT including a Resource Directory (RD), versus RD-only. METHODS: A primarily online, observer-blind randomised controlled trial comparing REACT (including RD) with RD only (registration ISRCTN72019945). Participants were UK relatives aged > = 16, with high distress (assessed using the GHQ-28), and actively help-seeking, individually randomised, and assessed online. Primary outcome was relatives' distress (GHQ-28) at 24 weeks. Secondary outcomes were wellbeing, support, costs and user feedback. RESULTS: We recruited 800 relatives (REACT = 399; RD only = 401) with high distress at baseline (GHQ-28 REACT mean 40.3, SD 14.6; RD only mean 40.0, SD 14.0). Median time spent online on REACT was 50.8 min (IQR 12.4-172.1) versus 0.5 min (IQR 0-1.6) on RD only. Retention to primary follow-up (24 weeks) was 75% (REACT n = 292 (73.2%); RD-only n = 307 (76.6%)). Distress decreased in both groups by 24 weeks, with no significant difference between the two groups (- 1.39, 95% CI -3.60, 0.83, p = 0.22). Estimated cost of delivering REACT was £62.27 per person and users reported finding it safe, acceptable and convenient. There were no adverse events or reported side effects. CONCLUSIONS: REACT is an inexpensive, acceptable, and safe way to deliver NICE-recommended support for relatives. However, for highly distressed relatives it is no more effective in reducing distress (GHQ-28) than a comprehensive online resource directory. TRIAL REGISTRATION: ISRCTN72019945 prospectively registered 19/11/2015.

Self-Report Measures Assessing Aspects of Personal Recovery in Relatives and Other Informal Carers of Those With Psychosis: A Systematic Review.

Background: Providing long-term care for a family member with psychosis can cause significant distress for informal carers due to the trauma of seeing their loved one in crisis, dealing with the difficult symptoms of psychosis and the burden of providing care. An important aspect of carers' adjustment can be construed as their personal recovery in relation to having a relative affected by psychosis. Self-report measures are increasingly used to assess personal recovery in service users, but less is known about the utility of such tools for carers. Aims: This review aimed to identify all self-report measures assessing aspects of carers' personal recovery, and to quality appraise them. Methods: Academic Search Ultimate, CINAHL, MEDLINE, PsychINFO and PubMed were searched for articles that reported the development of self-report measures created for carers of those with psychosis. Studies were appraised using the Consensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) checklist. A Levels of Evidence synthesis provided overall quality scores for each measure. Results: The search identified 3,154 articles for initial screening. From a total of 322 full text articles, 95 self-report measures were identified with a final 10 measures included for the quality assessment showing varying levels of psychometric rigor. Conclusions: The results show that no single self-report measure is currently available for use to comprehensively assess personal recovery for carers, highlighting the need for further research in this area and the development of a new measure.

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

BACKGROUND: 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. OBJECTIVE: 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). DESIGN AND SETTING: 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. PARTICIPANTS: 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. INTERVENTION: 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. MAIN OUTCOME MEASURE: The main outcome was the level of participants' distress, as measured by the General Health Questionnaire-28 items. RESULTS: 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 (n = 399) or the resource directory only (n = 401). Retention at 24 weeks was 75% (REACT arm, n = 292; resource directory-only arm, n = 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; p = 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; p = 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; p = 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; p = 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. LIMITATIONS: The sample comprised predominantly white British females, 25% of participants were lost to follow-up and dropout in the REACT arm was not random. CONCLUSIONS: 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. FUTURE WORK: Further research in improving the effectiveness of online carer support interventions is required. TRIAL REGISTRATION: Current Controlled Trials ISRCTN72019945. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 32. See the NIHR Journals Library website for further project information.

Relatives of people with severe mental health problems need better access to information and emotional support. The Relatives' Education And Coping Toolkit (REACT) is a website designed to do this. It includes lots of information presented in text and video, an online forum for relatives to share knowledge and experience, a messaging system where they can ask questions in confidence and a comprehensive directory of contact details for national organisations offering relevant support. Trained relatives support the forum and messaging. In the UK, we recruited 800 relatives of people with severe mental health problems: all were aged ≥ 16 years, had high levels of distress, had access to the internet and wanted help. We divided them into two equal groups: one group received REACT (including the resource directory), whereas the other group received the resource directory only. To ensure that there were no differences between groups at the start, relatives were allocated to the two groups randomly, so they had an equal chance of being in either group. We followed up with both groups at 12 and 24 weeks, and received data from approximately three-quarters of the participants. This trial found that REACT was acceptable, safe and inexpensive to deliver (£62.27 per relative), compared with face-to-face interventions, and that relatives using it felt well supported. However, once we accounted for missing data (relatives who dropped out of the trial or did not complete the follow-up questionnaires), there were no significant differences between the groups. There was no evidence that REACT increased relatives' quality of life or saved money for the NHS.

Measuring social and occupational functioning of people with bipolar disorder: A systematic review.

Previous literature has focused on impaired social and occupational functioning in Bipolar Disorder (BD), however this ignores people who may be functioning well or even exceptionally. This paper presents the first systematic review of how functioning is measured and the range of functioning observed in BD to aid applied research and practice in this area. Identified measures from studies reporting use of a social and/or occupational functioning measure in BD were organised according to frequency of use over the last 10 years, resulting in six measures (Global Assessment of Functioning (GAF), Functioning Assessment Short Test (FAST), Social and Occupational Functioning Scale (SOFAS), Social Adjustment Scale (SAS)), Social Functioning Scale (SFS) and LIFE-Range of Impaired Functioning (LIFE-RIFT). Descriptive statistics of sample scores were extracted and pooled to provide cross-study values for each measure. Around 16% of individuals with BD can be estimated to function at a high level, defined as those falling within two standard deviations of the mean score on each measure. Evidence of a ceiling effect for some measures suggests that BD functioning may have been underestimated during measure development. Future research is needed to further understand higher functioning in people with BD, and factors which may support this.

Improving access to psychological therapies (IAPT) for people with bipolar disorder: Summary of outcomes from the IAPT demonstration site.

Access to structured psychological therapy recommended for bipolar disorder (BD) is poor. The UK NHS Improving Access to Psychological Therapies initiative commissioned a demonstration site for BD to explore the outcomes of routine delivery of psychological therapy in clinical practice, which this report summarises. All clinically diagnosed patients with BD who wanted a psychological intervention and were not in acute mood episode were eligible. Patients were offered a 10-session group intervention (Mood on Track) which delivered NICE congruent care. Outcomes were evaluated using an open (uncontrolled), pre-post design. Access to psychological therapy increased compared to preceding 6 years by 54%. 202 people began treatment; 81% completed >5 sessions; median 9 sessions (range 6-11). Pre-post outcomes included personal recovery (primary outcome), quality of life, work and social functioning, mood and anxiety symptoms (secondary outcomes). Personal recovery significantly improved from pre to post-therapy; medium effect-size (d = 0.52). Secondary outcomes all improved (except mania symptoms) with smaller effect sizes (d = 0.20-0.39). Patient satisfaction was high. Use of crisis services, and acute admissions were reduced compared to pre-treatment. It is possible to deliver group psychological therapy for bipolar disorder in a routine NHS setting. Improvements were observed in personal recovery, symptoms and wider functioning with high patient satisfaction and reduced service use.