Psychosocial effects of attending educational and support conferences on adults with rare diseases: A pre-post study.

Background For adults with rare diseases (RDs), education and support conferences may serve as important platforms for disease-specific information and psychosocial support. This study examined the effects of RD conferences on psychosocial health, specifically self-efficacy, perceived stigma, social comfort and social support, among adults with RDs. Methods This pre-post quasiexperimental study recruited adults with RDs from three RD resource centres and 14 patient organisations in Norway. Participants self-selected to either attend an invited onsite conference (attendees) or not (nonattendees) between April 2022 and August 2023. Data were collected through online surveys administered four weeks before the conferences (Time 1) and six weeks after (Time 2). Changes over time in self-efficacy (General Self-Efficacy Scale, GSE), perceived stigma (Perceived Stigma Questionnaire, PSQ), social comfort (Social Comfort Questionnaire, SCQ) and social support (Duke-UNC Functional Social Support Questionnaire, FSSQ) were evaluated using hierarchical linear models (HLM). Outcomes were analysed separately among participants attending conferences organised by resource centres and by patient organisations. Results The sample comprised 274 participants, of whom 148 (54%) attended conferences and 126 (46%) served as nonattenders. The mean age was 49.2 years (range 16─84), with 59.9% females and 40.1% males. Attendees were significantly younger than controls and reported significantly lower GSE scores at Time 1. HLM showed a significant improvement in general self-efficacy among participants attending conferences at resource centres ( p  < 0.05, effect size ηp² =0.050), but no significant changes were observed in perceived stigma, social comfort, or social support ( p  > 0.05, effect sizes ηp² <0.02). Male participants and those with higher levels of education at the resource centres reported higher self-efficacy scores at both time points than females and those with lower levels of education ( p  = 0.020 and p  = 0.010, respectively). No significant improvements were found for any outcome among participants attending conferences organised by patient organisations (all effect sizes ηp² <0.03). Conclusions Educational and support conferences organised by resource centres were associated with modest improvements in general self-efficacy six weeks after attendance, however, no broader psychosocial effects were detected. Future research should determine which conference psychosocial components are essential to achieve meaningful improvements in adults with RDs.