Agreeing a set of biopsychosocial variables for collection across the UK Eating Disorders Clinical Research Network (EDCRN)

Background: Eating disorders are serious psychiatric disorders associated with high levels of co-occurring physical and mental health conditions, high rates of relapse and poor treatment outcomes. The collection of standardised, routinely collected data within clinical services holds promise to improve patient care. Proposals for standardised variables for collection in eating disorders services have been made, but not implemented, and have included limited biological measures. Given emerging evidence about the importance of metabolism and other biological factors in eating disorders, there is a need for such measures to be integrated into routine data collection. Objective: To agree on a set of biopsychosocial variables for routine data collection within eating disorder services in the United Kingdom.Methods: Two online workshops were conducted using an adapted nominal group technique to agree priorities for data collection in adult (n= 20) and child/adolescent (n=23) eating disorder services (n = 43 participants, comprised of people with lived experience, carers, clinicians and researchers). Two researchers independently conducted a reflexive thematic analysis of the workshop transcripts to identify qualitative priorities for data collection. Descriptive statistics were used to analyse the results of online voting. Measures and variables were chosen based on the priority-setting workshops, informed by prior work on psychometric properties of relevant measures. Findings: Thematic analysis identified four superordinate themes for data collection in eating disorder services: (1) a mutually valued and beneficial collaboration; (2) a holistic approach; (3) a balance between standardisation and individualisation; (4) doing no harm. Quantitative analysis of voting identified priorities across a range of domainsConclusions: This project agreed a set of biopsychosocial variables which have been implemented for routine data collection as part of the Eating Disorders Clinical Research Network. Further research should investigate the implementation of these variables for data collection in eating disorder services and identify priorities for data collection in under-represented groups such as people with experience of binge eating disorder.Clinical implications: Patients, caregivers, and clinicians support routine data collection in eating disorders services so long as the measures used are considered meaningful, not overly burdensome, non-stigmatising and collected as a collaboration between patients and treatment providers.