Objective: The Canadian Eating Disorder Priority Setting Partnership was established to identify and prioritize the top 10 research priorities for females, 15 years or older, with anorexia nervosa, by incorporating equal input from those with lived experience, families, and healthcare professionals.
Method: This project, which closely followed the James Lind Alliance guidelines, solicited research priorities from the Canadian eating disorder community by means of a five-step process including use of a survey, response collation, literature checking, interim ranking survey, and in-person prioritization workshop.
Results: The initial survey elicited 897 priorities from 147 individuals, with almost equal representation from all three stakeholder groups. From this, 603 responses aligned with the project objectives and were collapsed into 71 broader indicative questions. Based on available systematic reviews, 18 indicative questions were removed as they were considered answered by existing literature while 8 indicative questions were added from the recommendations of the reviews. In total, 61 indicative questions were ranked in an interim ranking survey, where 21 questions were prioritized as important by at least 20% of respondents. As a final step, 28 individuals from across Canada attended the prioritization workshop to coestablish the top 10 research priorities.
Discussion: Top priorities were related to treatment gaps and the need for more surveillance data. This systematic methodology allowed for a transparent and collaborative approach to identifying current priorities from both the service user and provider perspective. Wide dissemination is anticipated to promote work that is of high relevance to patients, families, and clinicians.
Keywords: James Lind Alliance; Priority Setting Partnership; anorexia nervosa; patient partners; research priorities.
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