Lived experience perspectives on eating disorder research: The use of adaptive trials and research priorities

Abstract

ObjectiveThis novel study sought to understand lived experience and carer perspectives on the use of adaptive trials to evaluate interventions for eating disorders, in addition to understanding the factors and outcomes of most importance in eating disorder research and treatments from a lived experience perspective.MethodA total of 73 people with either lived or carer experience consented, 70 started the questionnaire, and 36 (51%) completed all questions. Participants were asked Likert scale and open‐ended questions to understand what factors and outcomes of eating disorder interventions were most important to them and understand their pre‐existing knowledge of clinical trials. Two videos were then used to explain randomized controlled trials (RCTs) and adaptive trials and participants were asked their opinions, including perceived benefits and concerns, of each trial type.ResultsThe thematic analysis found two key themes regarding factors important in eating disorder treatment: Person‐centred care and Evidence‐based and effective treatment; and two key themes regarding outcomes of treatment: Sustained, full recovery and The bigger picture. Both RCTs and adaptive trials were viewed favorably, however, there was a slight preference for adaptive trials. Key themes for both demonstrated perceived benefits and ethical, practical, and scientific considerations unique to each.DiscussionFindings demonstrate the support of adaptive trials in eating disorder interventions from people with lived experience and their carers. It is recommended that researchers consider the use of adaptive designs and the incorporation of lived experience perspectives when designing future intervention trials.Public SignificanceThis novel study found that the use of adaptive trials in eating disorder intervention research is supported by people with lived experience and carers. Furthermore, the factors and outcomes of most importance to participants in this study are comparable to those previously identified in the emerging literature. The use of adaptive designs and the incorporation of lived experience are recommended in further clinical trials.

Adaptive design trials in eating disorder research: A scoping review

“…Furthermore, a paper in this special issue identified that individuals with a lived experience of an eating disorder preferred adaptive design over fixed trials once they had received information on the key differences between them (Pellizzer et al, 2024). Earlier inclusion of the lived experience perspective could improve study design, methods, effectiveness, enrolment and adherence, and for adaptive design trials, individuals with a lived experience can additionally be involved in informing pre-specified boundary rules for trial adaptations to ensure they represent meaningful change and that modifications are acceptable and relevant to patients and their careers.…”