Treatment outcomes for eating disorders in Sweden: data from the national quality registry

OBJECTIVE: To report the outcomes of eating disorders treatment in Sweden in 2012–2016. DESIGN: The number of patients treated and the number of patients not fulfilling an eating disorders diagnosis (remission) at 1 year of follow-up at the clinics listed in the National Quality Registry for Eating Disorders Treatment were analysed. The published outcomes at three clinics, which used survival analysis to estimate outcomes, were compared with their outcomes in the registry. Outcomes at the three biggest clinics were compared. SETTING: All eating disorders clinics. PARTICIPANTS: All patients treated at eating disorders clinics. INTERVENTION: Cognitive–behavioural therapy at most clinics and normalisation of eating behaviour at the three clinics with published outcomes. OUTCOME MEASURE: Proportion of patients in remission. RESULTS: About 2600 patients were treated annually, fewer than half were followed up and remission rates decreased from 21% in 2014 to 14% in 2016. Outcomes, which differed among clinics and within clinics over time, have been publicly overestimated by excluding patients lost to follow-up. The published estimated rate of remission at three clinics that treated 1200 patients in 1993–2011 was 27%, 28% and 40% at 1 year of follow-up. The average rate of remission over the three last years at the biggest of these clinics was 36% but decreased from 29% and 30% to 16 and 14% at the two other of the biggest clinics. CONCLUSIONS: With more than half the patients lost to follow-up and no data on relapse in the National Quality Registry, it is difficult to estimate the effects of eating disorders treatment in Sweden. Analysis of time to clinically significant events, including an extended period of follow-up, has improved the quality of the estimates at three clinics. Overestimation of remission rates has misled healthcare policies. The effect of eating disorders treatment has also been overestimated internationally.