Recorded mental health recovery narratives for people with mental health problems and informal carers: the NEON research programme including 3 RCTs

Background: Personal narratives describing recovery from mental health problems are widely available to the public. We developed theory on the characteristics and impact of recovery narratives, developed curation procedures for the NEON Collection of 659 recovery narratives and developed and evaluated the NEON Intervention, a theory-informed web application providing access to the NEON Collection. Objectives: To evaluate the effectiveness and cost-effectiveness of the NEON Intervention as compared to usual care and whether this varies by prior health service usage. Design: Three pragmatic parallel-group randomised controlled trials of the NEON Intervention. Intervention arm participants received immediate access. Control arm participants received access after a 52-week follow-up. The effectiveness analysis was a linear regression model of outcome at 52 weeks. The cost-effectiveness analysis compared the incremental cost-effectiveness ratio to the £20,000–30,000 threshold defined in the National Institute for Health and Care Excellence reference case. All analyses were intention-to-treat and baseline-adjusted, with multiple imputation for missing data. Setting: England. Participants: All trials recruited people who were aged 18+ years, resident in England, capable of accessing or being supported to access the internet, able to understand written and spoken English and capable of providing online informed consent. NEON Trial participants also had experience of mental health-related distress in the last 6 months, and psychosis in the previous 5 years. NEON-O (i.e. non-psychosis) Trial participants also had experience of mental health-related distress in the last 6 months, but with no psychosis in the previous 5 years. People identifying as informal carers for people affected by mental health problems but not eligible for the NEON Trial or NEON-O Trial were recruited to the NEON-C feasibility trial. All inclusion criteria were self-rated. Recruitment was from March 2020 to March 2021, through public communications by the central study team, and the work of clinical support officers at 11 secondary care research sites. Interventions: The NEON Intervention has four narrative access mechanisms: theory-informed algorithmic recommendation, random selection, self-selection by narrative category and return to impactful narratives. Participants used the NEON Intervention as much as they wished. Main outcome measures: Primary outcome: quality of life (Manchester Short Assessment). Secondary outcomes: distress, hope, self-efficacy, meaning in life and health status. Results: For the NEON-O (i.e. non-psychosis) Trial, we found a significant baseline-adjusted difference of 0.13 (95% confidence interval 0.01 to 0.26, p = 0.041) in the Manchester Short Assessment score between intervention and control, and a significant baseline-adjusted difference of 0.22 (95% confidence interval 0.05 to 0.40, p = 0.014) in the presence subscale of the Meaning in Life Questionnaire. The incremental cost-effectiveness ratio was £12,526 per quality-adjusted life-year, lower than a threshold of £30,000 per quality-adjusted life-year used for health service commissioning in England. For participants who had used specialist mental health services at baseline, the intervention appeared to reduce cost, although confidence intervals were wide and results were not statistically significant (–£98, 95% credible interval –£606 to £309). It also improved quality-adjusted life-years (0.0165, 95% credible interval 0.0057 to 0.0273) per participant. Hence, for this subgroup of participants, it dominated usual care. For the NEON Trial, no significant baseline-adjusted differences in outcome were found. An incremental cost-effectiveness ratio of £110,501 was found for the NEON Intervention. A subgroup analysis provided preliminary evidence for greater cost-effectiveness for current mental health service users, with an incremental cost-effectiveness ratio of £35,013. The NEON-C Trial showed acceptability and feasibility for informal carers. It recommended integration of carer narratives and creation of an online carer community. Limitations: Participants were recruited during a period in which movement and social interaction were widely affected by the COVID-19 pandemic, with the potential to influence generalisability. For the NEON-O Trial, we had an unrepresentative proportion of female-gendered participants (79.3%). Therefore, our NEON-O Trial findings cannot be generalised. Conclusions: This research programme has shown promising findings from the testing of the NEON Intervention. There is further research to do before implementation can be suggested. Future work: The NEON Intervention should be evaluated through a randomised controlled trial with people experiencing psychosis and using mental health services. The NEON Intervention should be refined to suit the needs of carers and then evaluated through a randomised controlled trial. The NEON-O Trial should be repeated with narrower mental health populations (e.g. mood disorders, eating disorders) to refine knowledge on effectiveness and cost-effectiveness. This may include refining the narrative collection used with these populations. If the NEON Intervention is implemented on a larger scale for people with non-psychosis mental health problems, then studies should be conducted to monitor benefits, continuously assess safety and documentation implementation processes. Future studies should consider alternative forms for presenting recovery narratives, including through multilanguage or multiculture support, and addressing digital exclusion by providing access through widely available technologies, such as smartphones and text messaging. Longitudinal designs are needed to document the short-term, medium-term and long-term impacts of recovery narratives. Trial registration: This trial is registered as NEON Trial ISRCTN11152837, NEON-O Trial ISRCTN63197153 and NEON-C Trial ISRCTN76355273.