From efficacy to effectiveness: child and adolescent eating disorder treatments in the real world (Part 2): 7-year follow-up

Background Eating disorders are often characterised as disabling, chronic or relapsing conditions with high mortality rates. This study reports follow-up outcomes for patients seen at the Maudsley Centre for Child and Adolescent Eating Disorders (MCCAED), whose end of treatment outcomes are reported in a separate paper. Methods Three-hundred-and-fifty-seven former patients, who received evidence-based treatment for an eating disorder as a child or adolescent in MCCAED between 2009 and 2014 were eligible to participate. Current contact information was available for 290, of whom 149 (51.4%) consented to follow-up. Participants were sent links to online questionnaires, with additional demographic information extracted from medical records. Descriptive analyses of key socioeconomic and health outcomes were performed on data collected. Results Mean length of follow-up was 6 years 11 months. Ten (6.7%) participants reported a current diagnosis of an eating disorder at follow-up. The great majority reported no (63.8%) or minimal (26.8%) interference from eating disorder difficulties. More than half (53.6%) reported other mental health diagnoses with most reporting no (33.8%) or minimal (50.7%) interference from those difficulties. One third (33.3%) had sought help for an eating disorder and around 20% received prolonged/intensive treatment during the follow-up period. Approximately 70% had sought treatment for other mental health difficulties (mostly anxiety or depression) and 35.4% had substantial treatment. At follow-up more than half (55.5%) reported doing generally well, and around two-thirds reported general satisfaction with their social well-being (65%). The majority (62.7%) had a good outcome on the Morgan Russell criteria, which was consistent with low self-reported ratings on EDE-Q, and low impact of eating disorder or mental health symptoms on work and social engagement. Most of the former patients who had day and/or inpatient treatment as a part of their comprehensive integrated care at MCCAED did well at follow-up. Conclusions Young people seen in specialist eating disorder services do relatively well after discharge at longer-term follow-up especially regarding eating disorders but less favourably regarding other mental health difficulties. Few reported a diagnosable eating disorder, and the great majority went on to perform similarly to their peers in educational and vocational achievements. Plain English summary The aim of this study was to evaluate the long term outcome of children and adolescents who had received evidence-based treatments for an eating disorder in a specialist eating disorders service. The study was designed in collaboration with former service users, to ensure that measures of recovery were relevant to people with lived experience. One-hundred-and-forty-nine former patients consented to participate and completed online questionnaires. Very few (6.7%) reported having an eating disorder at follow-up, however, more than half (53.6%) reported other mental health difficulties during the follow up period. One third sought help for an eating disorder and around 20% had prolonged and intensive eating disorder treatment. Approximately 70% sought help for other mental health difficulties and nearly a third had substantial treatment for these during the follow-up period. Regarding education and work, most participants were functioning equivalently to their peers. More than half (55.5%) reported doing generally well with respect to overall well-being, and around two-thirds reported general satisfaction with their social well-being and quality of life. The follow-up study suggests that most young people treated in specialist eating disorder services do relatively well at long-term follow-up, but many continue to need help with other mental health problems.

Automated summary

The study found that young people treated in specialist eating disorder services generally do well at long-term follow-up, especially regarding eating disorders, but less favorably regarding other mental health difficulties. Few reported a diagnosable eating disorder, and the majority performed similarly to their peers in educational and vocational achievements.