Gaining consensus on clinical quality outcomes for eating disorders: Framework for the development of an Australian national minimum dataset

OBJECTIVES: Eating disorders (EDs) are complex psychiatric illnesses requiring multidisciplinary care across both mental and medical healthcare settings. Currently, no nationally comprehensive, consistent, agreed on or mandated data set or data collection strategy exists for EDs in Australia: thus, little is known about the outcomes of care nor treatment pathways taken by individuals with EDs. InsideOut Institute was contracted by the Australian Government Department of Health to develop a minimum dataset (MDS) for the illness group with consideration given to data capture mechanisms and the scoping of a national registry. DESIGN: A four-step modified Delphi methodology was used, including national consultations followed by three rounds of quantitative feedback by an expert panel. SETTING: Due to social distancing protocols throughout the global SARS-CoV-2 pandemic, the study was conducted online using video conferencing (Zoom and Microsoft Teams) (Step 1), email communication and the REDCap secure web-based survey platform (Steps 2–4). PARTICIPANTS: 14 data management organisations, 5 state and territory government departments of health, 2 Aboriginal and Torres Strait Islander advising organisations and 28 stakeholders representing public and private health sectors across Australia participated in consultations. 123 ED experts (including lived experience) participated in the first quantitative round of the Delphi survey. Retention was high, with 80% of experts continuing to the second round and 73% to the third. MAIN OUTCOME MEASURES: Items and categories endorsed by the expert panel (defined a priori as >85% rating an item or category ‘very important’ or ‘imperative’). RESULTS: High consensus across dataset items and categories led to the stratification of an identified MDS. Medical status and quality of life were rated the most important outcomes to collect in an MDS. Other items meeting high levels of consensus included anxiety disorders, depression and suicidality; type of treatment being received; body mass index and recent weight change. CONCLUSIONS: Understanding presentation to and outcomes from ED treatment is vital to drive improvements in healthcare delivery. A nationally agreed MDS has been defined to facilitate this understanding and support improvements.