Stynke Castelein

Background: Hope and confidence support personal recovery by helping individuals with mental illness to rediscover meaning, enhance social connections, and build fulfilling lives. Digital recovery narrative interventions may help stimulate these recovery processes by providing access to hopeful lived-experience stories. Objective: This pilot feasibility randomized controlled trial evaluated the feasibility, acceptability, and exploratory outcome signals of STORY MINE, a novel digital intervention based on hopeful recovery narratives, to support personal recovery among adult service users receiving specialized mental health care at a Dutch psychiatric institute. Methods: Adult service users receiving outpatient specialized mental health care were recruited through clinician referral and self-enrollment. Participants (N=28) were randomized (1:1) to either intervention (STORY MINE access for 12 wk alongside care as usual) or control (care as usual only). Feasibility and acceptability were assessed via platform usage data, evaluation questions embedded within the intervention, and postintervention feedback. Quantitative outcomes were assessed at baseline and postintervention using validated self-report questionnaires on mental health confidence, hope, self-stigma, and personal recovery. Descriptive statistics and exploratory effect sizes with 95% CIs were calculated. Qualitative feedback was analyzed thematically to explore user experiences and perceived impact. Results: All participants (N=28) completed self-report questionnaires, while 13 of 14 participants in the intervention group provided evaluation feedback. Feasibility and acceptability were rated positively (mean 7.7, SD 2.52). Engagement was low, with a mean of 2.77 (SD 1.49) active login days per participant over 12 weeks, with some participants reporting minor technical barriers to use. Participants reported mixed perceived recognition (identification with narratives) and relevance (perceived applicability), but qualitative findings indicated perceived benefits including increased meaning-making, inspiration, and connectedness to recovery narratives. Some reported STORY MINE contributed to their recovery process (eg, narratives provided practical tips and evoked meaning-making and more positive self-evaluation). However, mixed emotional responses were reported; one participant reported narratives triggered distressing memories. Exploratory analyses showed small negative effect sizes for mental health confidence (Cohen d =−0.32, 95% CI −1.07 to 0.42), hope (Cohen d =−0.45, 95% CI −1.20 to 0.30), and self-stigma (Cohen d =−0.33, 95% CI −1.08 to 0.42), and a medium negative effect size for personal recovery (Cohen d =−0.53, 95% CI −1.28 to 0.22). These effect estimates decreased after excluding 2 participants experiencing an acute mental health crisis during the study period. Conclusions: STORY MINE appears feasible and acceptable as a supplement to specialized mental health care, although low engagement and mixed emotional responses highlight the need for refinement, particularly to improve user engagement, emotional safety, perceived relevance, and accessibility of the intervention. Findings should be interpreted cautiously given the pilot design and small sample size. A fully powered randomized controlled trial is warranted to evaluate effectiveness.

A new Dutch screening questionnaire for autism (16+) was developed to better capture the experiences of women with autism: the Autistic Women’s Experience (AWE). Its psychometric properties were tested in a group of autistic adults (n=79 women and n=59 men) and a group of adults from the general population (n=238 women and n=236 men). Th e AWE consists of 49 items (22 items from the Autism-spectrum Questionnaire (AQ) and 27 newly developed items). Surprisingly, no gender diff erences were found on the AWE total score, either within the autism group or the group from the general population. Both AQ and AWE appeared to be excellent measures for assessing autistic traits in both men and women. Th e AWE adds additional clinical value for gender-sensitive autism care.

Peer support can be described as a recovery-oriented collaborative practice where individuals with lived experiences with mental health conditions engage in the support of others experiencing simil...

BACKGROUND Hope and confidence support personal recovery by helping individuals with mental illness to rediscover meaning, enhance social connections, and build fulfilling lives. Recovery narrative interventions might help to promote these processes in people with mental illness. OBJECTIVE This pilot study evaluated the feasibility, acceptability, and preliminary effects of a novel digital intervention, based on hopeful recovery narratives (STORY MINE), to support personal recovery in service users receiving specialized mental health care. METHODS Twenty-eight participants were randomly assigned to intervention (STORY MINE access for 12 weeks) or control (care as usual). Feasibility and acceptability were assessed via usage data, evaluation questions embedded in the intervention, and data collected at baseline and post-intervention, using validated questionnaires on mental health confidence, hope, self-stigma, and personal recovery. RESULTS Most participants rated STORY MINE as feasible and acceptable (7.7/10), although perceived recognition was mixed, and some technical barriers were reported by participants. Overall usage of narratives was low (2.77 average active logins per participant). Nevertheless, the majority of participants reported positive impact, such as increased meaning-making, inspiration, and connectedness to the narratives. Some reported STORY MINE contributed to their recovery process (e.g. narratives provided practical tips and evoked meaning-making, and more positive self-evaluation). One participant reported narratives triggered distressing memories. Initial small (mental health confidence, hope, self-stigma) to medium (personal recovery) negative effect sizes were observed, which disappeared after excluding two outliers due to a mental health crisis. CONCLUSIONS STORY MINE appears feasible and acceptable as a supplement to routine care, but refinements are recommended to improve adherence, safety, relevance, and accessibility. A larger trial is warranted.

Background: Antipsychotics are used to manage symptoms and reduce the risk of relapse. However, the antipsychotic side effects are associated with a lower quality of life and are seen as major barriers to achieving societal recovery by antipsychotic users. In this study, we investigate the association of side effects, antipsychotic dose, and antipsychotic polypharmacy with societal recovery and happiness. Study Design: Data were used from a large, naturalistic, longitudinal cohort of people using an antipsychotic in long-term care (Pharmacotherapy Monitoring and Outcome Survey [PHAMOUS], 2013-2021). The association between subjective antipsychotic side-effect burden (measured with the Subjective Response to Antipsychotics questionnaire), antipsychotic dose, and antipsychotic polypharmacy with societal recovery and happiness was investigated using mixed-effect linear regression models. In an exploratory analysis, the associations between individual side effects with societal recovery and happiness were assessed. Study Results: Data from 5971 observations nested in 2490 participants were used. The subjective antipsychotic side-effect burden, total antipsychotic dose, and antipsychotic polypharmacy were significantly negatively associated with societal recovery. Subjective antipsychotic side-effect burden and total antipsychotic dose were significantly negatively associated with happiness, but antipsychotic polypharmacy was not. Cognitive, mood, and physical anticholinergic side effects were most strongly negatively associated with societal recovery. Mood-, sedation-, cognitive-, and sexual-related side effects were most strongly negatively associated with happiness. Conclusions: These results show that side effects and a higher dose of antipsychotic medication are negatively associated with societal functioning and happiness. Future research should focus on whether dose reduction is beneficial for societal recovery and happiness in the long-term.

Background: Harmonization of research methodology, measures, and existing cohort data is needed to advance the field of psychosis epidemiology. The International Psychosis Epidemiology Consortium (IPEC) has been initiated to create a data-sharing platform for psychosis cohorts globally and provide infrastructure for data harmonization. This profile paper describes the design and data harmonization process, and the technical, ethical, and legal steps taken to set up the IPEC virtual databank, as well as the organizational structure we developed for IPEC. Study Design: An international group of researchers, collaborating in the Schizophrenia International Research Society—Epidemiology Research Harmonization Group, drafted inclusion and exclusion criteria for participating cohorts and selected, among others, sociodemographic, socioeconomic, and clinical variables for harmonization. Drawing upon current guidelines for data harmonization, a guideline specifically for psychosis cohorts and a software architecture for federated analysis were developed. Finally, as proof of principle, all steps of data harmonization were applied to 2 cohorts, and summary statistics on core variables were calculated. Study Results: A platform for remote and nondisclosive analyses of multisite individual-level data and a data catalog with information on IPEC’s variables and harmonization procedures were built. The 6-step design, harmonization procedure, ethical and legal procedures, future organizational structure and how to join IPEC were described. Data harmonization of variables of the 2 proof-of-principle cohorts was successful. Conclusions: IPEC has created a virtual databank for individual-level data of psychosis cohorts and implemented a technical infrastructure for remote federated analysis. This databank facilitates future large-scale collaborative international psychosis epidemiology research.

Background: Due to the side effects of antipsychotics, overtreatment is an important concern. Previous research focused on antipsychotic polypharmacy and excessively high doses. In this study, the aim is to map changes over the years in potential overtreatment, antipsychotic polypharmacy, total antipsychotic dose, and subjective side effect burden. Moreover, the association of the total dose and antipsychotic polypharmacy with the subjective side effect burden will be investigated. Study design: Data from a naturalistic longitudinal cohort were used (PHAMOUS, 2013–2021). Potential overtreatment was defined as a antipsychotic dose equivalent to > 5 mg risperidone or antipsychotic polypharmacy, in combination with a high subjective side effect burden. Mixed effect models were used to investigate trends in potential overtreatment, antipsychotic polypharmacy, total antipsychotic dose, and subjective side effect burden and to assess the association of total dose and antipsychotic polypharmacy with subjective side effect burden. Study results: Overall, 15,717 observations nested in 5,107 participants were used. One-third of the participants were potentially overtreated, which did not change over time. The prevalence of a dose above the equivalent of 5 mg risperidone decreased, antipsychotic polypharmacy prevalence increased, and the subjective side effect burden decreased. A higher dose and antipsychotic polypharmacy were associated with higher subjective side effect burden. Conclusion: Potentially overtreated patients should be revaluated to assess whether changes are needed. To assess whether a patient is truly overtreated, their clinical history, number of relapses, patients’ preferences, overall functioning, previous attempts to reduce antipsychotic treatment, and previous severity of disease should be taken into account.

In deze bijdrage wordt verslag gedaan van een studie die onderzoekt of het CHIME-raamwerk voor herstel mogelijk ook geschikt is om persoonlijk herstel, behalve bij mensen met psychotische klachten, te onderzoeken bij mensen met andere diagnoses, zoals stemmingsgerelateerde klachten en autisme. Dit werd onderzocht door dertig herstel- en ervaringsverhalen uit de ‘Verhalenbank Psychiatrie’ (UMC Utrecht) binnen verschillende diagnostische groepen te analyseren op de elementen van het CHIME-raamwerk. De conclusie is dat persoonlijk herstel inderdaad een transdiagnostisch concept is.