Long-Term, Complex Eating Disorders

Many people with EDs recover, but some go on to develop what are sometimes called severe and enduring eating disorders, or SEED. While recent work has called into question assumptions about the “untreatability” of longstanding EDs, a fuller understanding of best approaches to helping those who have had their EDs for a long time is needed. A team at the Oxford Health NHS Foundation Trust, Oxford, UK, devised a program involving a literature review, in-person interviews, and focus groups with staff members to help patients find a care “pathway” to recovery and weight restoration (J Eat Disord. 2022. 10:128).

Dr. Megan Reay and her colleagues sought to define, describe, and support patients with long-term complex eating disorders, and to identify ways to best support them. Their three-stage approach involved 12 patients who agreed to be interviewed, and 28 staff members, from varied specialties, who participated in one of three focus groups. The interviews and focus group sessions took place in person, by telephone, or via video calls.

What the researchers found

The mean length of eating disorders among the patients was more than 19 years. Five participants (42%) were inpatients, and seven (58%) were outpatients at the time they took part in the study.

Most of the patient participants preferred the term “long-term eating disorder” rather than SEED or chronic eating disorder, and did not like the use of arbitrary cutoffs, such as using body mass index (BMI), as one criterion for recovery. Many described feeling that their eating disorder had turned into a lifelong illness that had become more complex and more complicated with time. Many also felt they had no control over their eating disorder. They wished for personalized support and age-appropriate treatment. Many reported that the disease had a large impact on their day-to-day functioning; many also had a sense, as one patient expressed, that their “life has been lost.” Many of the participants also proposed having greater access to peer support groups, and using video access when needed.

Twenty-eight staff members took part in the focus groups; most were female, and they represented a wide range of professions. Many staff members wanted more flexibility, while others preferred the current structured approach. Some recommended promoting a more hopeful message to patients. Other recommendations included taking an individualized approach to treatment, with more patient choices in care, so that patients were not just passively receiving care without any controls. The staff members worked to prepare patients for their life after recovery and weight restoration. Other recommendations were helping patients learn to manage and maintain their weight and to improve their quality of life, as opposed to simply focusing on BMI. The need to build helpful connections outside mental health services was very clear to the patients and staff members.

A suggested pathway

The patients and ED staff participants offered a number of suggestions to improve long-term care. The authors propose that some patients with long-term illness who are not yet ready to work toward recovery might benefit from an alternate pathway that focuses on quality of life through individually centered support. The results also underscore the importance of promoting hope among patients.