Learning from Patients with Longstanding Anorexia Nervosa

“We’re using the language that best fits the lived experience of patients, who feel that the term ‘enduring’ creates a sense of hopelessness and finality,” says Rebecca Boswell, PhD, Director of Princeton Center for Eating Disorders and Administrative Director of Psychiatric Services at Penn Medicine Princeton Medical Center. “Through our research, we’ve found that many patients with longstanding anorexia nervosa want to maintain hope about the possibility of recovery – and we do, too.”

This clinical research protocol – which began recruiting patients in January 2023 and will continue through early 2025 – focuses on how to better adapt treatment approaches to the individual based on insight gained through interviews on the lived experience of longstanding anorexia nervosa among patients at Princeton Center for Eating Disorders. Based on study data, the following adaptive strategies have been implemented for participants:

Patients are considered integral members of the treatment team. Goals are set collaboratively through weekly team meetings.

Patients have more flexibility. For example, if a patient has difficulty completing meals, more options are available in menu planning. Choices might include increasing supplementation, repeating certain menu items more often, or tube feeding so patients don’t have to navigate oral intake before they’re ready.

The therapeutic viewpoint focuses on both clinical and quality of life goals. Discussions center around the type of changes patients want to see in their lives from week to week across the course of treatment, and how to build in flexibility that can be maintained upon discharge.

Dr. Boswell notes that the team has gained several key insights thus far, including a greater need for trauma-informed care than anticipated to help patients engage more meaningfully in their recovery.

“We’ve also learned that when patient needs for comfort and safety are accommodated, they tend to stay in treatment longer – and that leads to improved medical and psychiatric stability,” adds Dr. Boswell. “In addition, these adjustments to the treatment plan for individuals with longstanding anorexia nervosa have not disrupted the overall treatment milleu."