What does taking olanzapine mean to young people with anorexia nervosa and their families? Findings from the OPEN feasibility trial.

Background: Olanzapine is a second-generation antipsychotic medication often prescribed for young people with Anorexia Nervosa (AN), though supporting evidence is limited. The OPEN feasibility trial of olanzapine for young people (12-24 years) with AN, explored the feasibility of a future definitive trial on olanzapine in young people. Qualitative interviews examined the acceptability of olanzapine and trial design among young people with AN and their families. Here, we explore: what does taking olanzapine mean to young people with AN and their families, specifically regarding decisions to take or decline it?

Methods: Twelve young people who agreed to take olanzapine, two who declined, and four parents took part in semi-structured qualitative interviews, which were conducted and analysed by lived-experience researchers using reflexive thematic analysis. Four young people who agreed to take olanzapine also took part in follow-up interviews, totalling 23 interviews with 16 participants. Of the interviewed parents, three had a child who consented to olanzapine and one had a child who declined. Lived-experience-led analysis, influenced by the survivor research tradition, is novel as applied to this topic.

Results: We constructed four themes: (1) Moving away from illness in contexts of desperation, moving towards recovery as broader life goals; (2) Parents and young people critically evaluate multiple information sources on olanzapine; (3) Consent versus coercion in olanzapine decision-making are determined by treatment history and clinical power dynamics; (4) Ambivalence around recovery can be heightened regarding medication. Across themes, young people and parents showed their decision-making to be careful and context-bound, factoring in: concerns around treatment delays; trusting or mistrustful relationships to clinicians or the broader system; peer experiences; and fears around recovery alongside goals for improved quality-of-life. Reported clinical conversations about weight gain did not always reflect olanzapine's evidence base. Important risks included unsupervised olanzapine cessation where wishes to stop were not accommodated clinically, and increased food restriction on starting olanzapine.

Conclusions: Views and experiences of olanzapine are inseparable from young people's clinical and social contexts. Clinicians should consider discussing these contexts alongside medication, bearing in mind clinical encounters' complex power dynamics, and should be clear about olanzapine's association with weight gain.

Trial registration: ISRCTN80075010.