Recovery beyond clinical improvement - Recovery outcomes measured for people with bipolar disorder between 1980 and 2020.

BACKGROUND: Outcome measurement in bipolar disorder (BD) traditionally focused on clinical improvement without considering other domains. Improvement trajectories in clinical and social-functional domains are different and can simultaneously appear in one while not in other domains. Measuring personal recovery (PR) has become a priority internationally. This review explored the shift in research investigating operational recovery definitions and underpinning factors of recovery in BD over the past four decades. METHODS: Studies defining recovery domains (other than clinical recovery) in BD were systematically reviewed; operational recovery definitions and factors assessed in association with recovery were thematically categorised and integrated in a narrative synthesis. RESULTS: Thirty-three studies, comprising 3638 participants from 19 countries were included. Identified operational recovery definition themes included i) PR ii) social-functional (SFR), and iii) occupational-residential (ORR) recovery. Examined factors were grouped as demographic, clinical and psychosocial factors. Predominantly demographic factors were linked to ORR and clinical factors to SFR. Depressive symptomatology was the only clinical factor associated with PR. Research investigating psychosocial factors in PR is emerging and has showed that resilience and appraisals of mood seem to be associated with PR. LIMITATIONS: Studies not available in English or examining functioning without defining recovery were excluded. CONCLUSIONS: Earlier operational recovery definitions of ORR and SFR were often arbitrary and inconsistent, and predominantly focused on clinical and demographic underpinning factors. While research attempts to follow the significant policy shifts towards personalised care by measuring what matters to individuals and exploring broader underpinning psychosocial factors, it is still lagging behind.

Psychological factors in personal and clinical recovery in bipolar disorder.

BACKGROUND: Research into bipolar disorder (BD) has primarily focused upon clinical recovery (CR), i.e. symptom reduction, and overlooked personally meaningful recovery outcomes emphasized by service users. Personal recovery (PR) has been a major focus in the formulation of mental health policies and guidelines, and yet, research into factors influencing PR in BD is in its infancy. METHODS: This study compared psychological associates of concurrent PR and CR, and determined psychological factors in PR prospectively at 6 months. RESULTS: 107 participants completed baseline assessments, of whom 84% completed follow-up at 6 months. Controlling for potential confounders, multiple linear and ordinal regression models showed that some psychological factors underpinned both CR and PR at baseline: worse PR and CR outcomes were associated with higher negative self-dispositional appraisals and dysfunctional attitudes. Better PR, but worse CR ([hypo]mania related) were associated with higher adaptive coping. Additionally, better PR (but not CR) was associated with higher concurrent risk taking at baseline and predicted at follow-up by higher levels of baseline rumination. Better CR ([hypo]mania related), but not PR, was associated with lower impulsivity, but higher BAS processes. LIMITATIONS: Psychological and clinical factors were not measured at follow up and may have changed over time. Participants were a convenience sample. CONCLUSIONS: Understanding psychological factors driving recovery in BD is essential for refining the conceptual framework of PR, and informing psychological models and related interventions for BD. The identified differences in psychological factors highlight the importance of more individualised, PR focused therapeutic approaches.

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.

Methodological Challenges in Web-Based Trials: Update and Insights From the Relatives Education and Coping Toolkit Trial.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2017-016965.

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.

IMPlementation of An online Relatives' Toolkit for psychosis or bipolar (IMPART study): iterative multiple case study to identify key factors impacting on staff uptake and use.

BACKGROUND: Despite the potential of digital health interventions to improve the delivery of psychoeducation to people with mental health problems and their relatives, and substantial investment in their development, there is little evidence of successful implementation into clinical practice. We report the first implementation study of a digital health intervention: Relatives Education And Coping Toolkit (REACT), into routine mental healthcare. Our main aim was to identify critical factors affecting staff uptake and use of this online self-management tool for relatives of people with psychosis or bipolar. METHODS: A mixed-methods, theory-driven (Normalisation Process Theory), iterative multiple case study approach using qualitative analysis of interviews with staff and quantitative reporting of uptake. Carer researchers were part of the research team. RESULTS: In all, 281 staff and 159 relatives from Early Intervention teams across six catchment areas (cases) in England registered on REACT; 129 staff took part in qualitative interviews. Staff were positive about REACT helping services improve support and meet clinical targets. Implementation was hindered by: high staff caseloads and difficulties prioritising carers; perception of REACT implementation as research; technical difficulties using REACT; poor interoperability with trust computer systems and care pathways; lack of access to mobile technology and training; restricted forum populations; staff fears of risk, online trolling, and replacement by technology; and uncertainty around REACT's long-term availability. CONCLUSIONS: Digital health interventions, such as REACT, should be iteratively developed, evaluated, adapted and implemented, in partnership with the services they aim to support, and as part of a long term national strategy to co-develop integrated technology-enabled mental healthcare. Implementation strategies must instil a sense of ownership for staff and ensure they have adequate IT training, appropriate governance protocols for online working, and adequate mobile technologies. Wider contextual factors including adequate funding for mental health services and prioritisation of carer support, also need to be addressed for successful implementation of carer focussed digital interventions. TRIAL REGISTRATION: Study registration: ISCTRN 16267685.

Bounce Forward: A School-Based Prevention Programme for Building Resilience in a Socioeconomically Disadvantaged Context.

Socioeconomic status is a strong predictor of normative development and well-being in young people. It is well-known that growing up in a socioeconomically disadvantaged context may lead to negative outcomes, both in childhood and in adulthood. Early intervention and prevention programmes are crucial for building resilience and improving health, well-being and equity. Bounce Forward is a school-based prevention programme implemented in Blackpool, a town in the United Kingdom facing multiple challenges. It was part of a whole town resilience approach and nascent global social movement known as the "Resilience Revolution." Between 2017 and 2019, the programme was delivered in all Year 5 classes at every primary school in Blackpool (n school = 36), reaching out to 3,134 students (ages 9-10; 50.4% male). The programme aimed to increase resilience in young people by building knowledge and skills about mental health and resilience through 10 sessions. In the current study, we longitudinally examined a range of protective factors, which are relevant to young people's resilience, as well as their mental health outcomes at three time points: before they participated in Bounce Forward, at the end of the programme, and 3-5 months later, when they started Year 6. The current sample included 441 Year 5 students (54.2% male) from 11 primary schools in Blackpool. Nineteen teaching staff also participated in the study and provided qualitative data regarding the impact of the programme on their students. Results showed improvement in some areas of young people's resilience after taking part in Bounce Forward. We also identified gender differences in several protective factors, indicating that boys may need further support. Teaching staff highlighted improvements in various areas; and also observed that their students have been using the strategies that they learnt from the programme. Altogether, findings suggested that young people benefitted from Bounce Forward. The programme is sustainable, offering a free to download teacher resource pack that allows schools to self-deliver it.

IMPlementation of A Relatives' Toolkit (IMPART study): an iterative case study to identify key factors impacting on the implementation of a web-based supported self-management intervention for relatives of people with psychosis or bipolar experiences in a National Health Service: a study protocol.

BACKGROUND: Web-based interventions to support people to manage long-term health conditions are available and effective but rarely used in clinical services. The aim of this study is to identify critical factors impacting on the implementation of an online supported self-management intervention for relatives of people with recent onset psychosis or bipolar disorder into routine clinical care and to use this information to inform an implementation plan to facilitate widespread use and inform wider implementation of digital health interventions. METHODS: A multiple case study design within six early intervention in psychosis (EIP) services in England, will be used to test and refine theory-driven hypotheses about factors impacting on implementation of the Relatives' Education And Coping Toolkit (REACT). Qualitative data including behavioural observation, document analysis, and in-depth interviews collected in the first two EIP services (wave 1) and analysed using framework analysis, combined with quantitative data describing levels of use by staff and relatives and impact on relatives' distress and wellbeing, will be used to identify factors impacting on implementation. Consultation via stakeholder workshops with staff and relatives and co-facilitated by relatives in the research team will inform development of an implementation plan to address these factors, which will be evaluated and refined in the four subsequent EIP services in waves 2 and 3. Transferability of the implementation plan to non-participating services will be explored. DISCUSSION: Observation of implementation in a real world clinical setting, across carefully sampled services, in real time provides a unique opportunity to understand factors impacting on implementation likely to be generalizable to other web-based interventions, as well as informing further development of implementation theories. However, there are inherent challenges in investigating implementation without influencing the process under observation. We outline our strategies to ensure our design is transparent, flexible, and responsive to the timescales and activities happening within each service whilst also meeting the aims of the project. TRIAL REGISTRATION: ISCTRN 16267685 (09/03/2016).

Protocol for an online randomised controlled trial to evaluate the clinical and cost-effectiveness of a peer-supported self-management intervention for relatives of people with psychosis or bipolar disorder: Relatives Education And Coping Toolkit (REACT).

INTRODUCTION: Despite clinical guidelines recommendations, many relatives of people with psychosis or bipolar disorder do not currently receive the support they need. Online information and support may offer a solution. METHODS AND ANALYSIS: This single-blind, parallel, online randomised controlled trial will determine clinical and cost-effectiveness of the Relatives Education And Coping Toolkit (REACT) (including an online resource directory (RD)), compared with RD only, for relatives of people with psychosis or bipolar disorder. Both groups continue to receive treatment as usual. Independent, web-based variable, block, individual randomisation will be used across 666 relatives. Primary outcome is distress at 24 weeks (measured by General Health Questionnaire; GHQ-28) compared between groups using analysis of covariance, adjusting for baseline score. Secondary clinical outcomes are carer well-being and support. Cost-effectiveness analysis will determine cost of a significant unit change (three-point reduction) in the GHQ-28. Costs include offering and supporting the intervention in the REACT arm, relevant healthcare care costs including health professional contacts, medications prescribed and time off (or ability to) work for the relative. Cost utility analysis will be calculated as the marginal cost of changes in quality-adjusted life years, based on EuroQol. We will explore relatives' beliefs, perceived coping and amount of REACT toolkit use as possible outcome mediators. We have embedded two methodological substudies in the protocol to determine the relative effectiveness of a low-value (£10) versus higher value (£20) incentive, and an unconditional versus conditional incentive, on improving follow-up rates. ETHICS AND DISSEMINATION: The trial has ethical approval from Lancaster National Research Ethics Service (NRES)Committee (15/NW/0732) and is overseen by an independent Data Monitoring and Ethics Committee and Trial Steering Committee. Protocol version 1.5 was approved on 9 January 2017. All updates to protocols are uploaded to the National Institute for Health Research (NIHR) Journals Library. A full statistical analysis plan is available at https://figshare.com/account/home#/projects/19975. Publications will be in peer-reviewed journals (open access wherever possible). Requests for access to the data at the end of the study will be reviewed and granted where appropriate by the Trial Management Group. TRIAL REGISTRATION NUMBER: ISRCTN72019945, pre-results.

Psychological mechanisms and the ups and downs of personal recovery in bipolar disorder.

BACKGROUND: Personal recovery is recognized as an important outcome for individuals with bipolar disorder (BD) and is distinct from symptomatic and functional recovery. Recovery-focused psychological therapies show promise. As with therapies aiming to delay relapse and improve symptoms, research on the psychological mechanisms underlying recovery is crucial to inform effective recovery-focused therapy. However, empirical work is limited. This study investigated whether negative beliefs about mood swings and self-referent appraisals of mood-related experiences were negatively associated with personal recovery. DESIGN: Cross-sectional online survey. METHOD: People with a verified research diagnosis of BD (n = 87), recruited via relevant voluntary sector organizations and social media, completed online measures. Pearson's correlations and multiple regression analysed associations between appraisals, beliefs, and recovery. RESULTS: Normalizing appraisals of mood changes were positively associated with personal recovery. Depression, negative self-appraisals of depression-relevant experiences, extreme positive and negative appraisals of activated states, and negative beliefs about mood swings had negative relationships with recovery. After controlling for current mood symptoms, negative illness models (relating to how controllable, long-term, concerning, and treatable mood swings are; ß = -.38), being employed (ß = .39), and both current (ß = -.53) and recent experience of depression (ß = .30) predicted recovery. LIMITATIONS: Due to the cross-sectional design, causality cannot be determined. Participants were a convenience sample primarily recruited online. Power was limited by the sample size. CONCLUSIONS: Interventions aiming to empower people to feel able to manage mood and catastrophize less about mood swings could facilitate personal recovery in people with BD, which might be achieved in recovery-focused therapy. PRACTITIONER POINTS: Personal recovery is an important outcome for people living with bipolar disorder More positive illness models are associated with better personal recovery in bipolar disorder, over and above mood symptoms Recovery-focused therapy should focus on developing positive illness models Recovery-focused therapy should address personally meaningful goals such as gaining employment.