Measuring eating disorder outcome definitions, dropout and patients' perspectives

Sammanfattning: Background: Despite a plethora of research, there are serious limitations in our knowledge of outcome in eating disorders. Almost all studies have been compromised by the problem of treatment dropout or non-participation in follow-ups. There exists a lack of consensus in definitions of outcome and choice of outcome measures, and there is a dearth of studies focusing on how patients subjectively perceive recovery. The overall aim of this thesis was to address problems in measuring outcome after treatment for eating disorders, with an emphasis on methodological issues. Specific areas of investigation included non-participation in long-term follow-ups, the role of self-image in treatment dropout, outcome among patients who drop out, patients’ subjective perspectives of recovery, and the impact of different methods of measuring outcome.Method: Four quantitative studies (I, II, III and V) were conducted within the framework of a large Swedish multi-centre study of eating disorders, which adopted a prospective, longitudinal and naturalistic design. Study IV was a qualitative investigation encompassing interviews with former ex-patients who were considered recovered.Results: Study I suggested that the reasons for non-participation in research were mainly patient related (69%). Those declining further participation in follow-ups were reported significantly lower levels of obsession-compulsion and anxiety, while those not traceable reported significantly higher levels of hostility at admission. Study II suggested that patients who dropped out from treatment initially presented with less negative self-image and fewer psychological problems compared to those who remained in treatment. Low levels of self-blame discriminated dropouts from completers and remainers, and significantly predicted treatment dropout. Study III found no significant differences between dropouts and completers at follow-up, with the exception that dropouts were more dissatisfied with treatment. However, patterns of treatment response revealed that those who completed treatment made significantly greater changes in terms of reduced eating disorder symptoms, fewer psychological problems and a more positive self-image compared to dropouts. Study IV found that patients who had recovered from an eating disorder tended to describe other dimensions of outcome than those usually reported in follow-ups. Patients tended to view recovery in terms of being able to relate in a relaxed and accepting manner to food, their bodies, themselves as individuals, and their social environment. Some perceived recovery in terms of coping better with emotions, while others experienced themselves as healthier than people generally regarding food and weight. Study V applied some of the most frequently used outcome measures for eating disorders and found marked variations in the number of patients who could be considered in remission. Overall remission rates varied from 24.3% to 77.8%, depending on the outcome measure used.Discussion: The results suggest that non-participation and dropout are not unitary phenomena. There is also a need for greater consensus on how eating disorder outcome should be measured. This is necessary in order to make comparisons between different outcome studies meaningful, and to elucidate the overall picture of eating disorders outcome.