Abstract
BackgroundThe 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.AimsOur aim was to determine clinical and cost-effectiveness of REACT including a Resource Directory (RD), versus RD-only.MethodsA 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.ResultsWe 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.ConclusionsREACT 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 registrationISRCTN72019945 prospectively registered 19/11/2015.
Highlights
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 National Institute for Health and Care Excellence (NICE) recommended information and emotional support
Sample estimates of levels of clinically significant distress and burden in relatives of people with psychosis range from a third [4], to more than 60% of those in early intervention in psychosis (EIP) services [6, 7], with almost half reporting post-traumatic stress symptoms associated with their caring roles [8], linked to episodes of violence, disruptive behaviour and forced admission [9]
Particular challenges for relatives of people with bipolar experiences include high risk of suicide attempts [17], mania related extravagant spending, irritability and disinhibited behaviour [18,19,20], all of which are associated with feelings of helplessness, anger, and anxiety in their relatives [21, 22]
Summary
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. The UK Government recognises the need to support carers [30], and the National Institute for Health and Care Excellence (NICE) recommends that all relatives of people with psychosis or bipolar be given carerfocused education and support, and offered structured family intervention to enhance family coping and communication [31, 32]. A recent national audit of community mental health services in the UK showed poor implementation, with only 50% of relatives receiving carer-focused education and support and only 12% receiving structured family intervention [33]
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