MENDING THE NET WITH THOSE LIVING AT RISK: GAINING A BETTER UNDERSTANDING OF THE PATIENT AND PARENT EXPERIENCE OF MEDICAL MANAGEMENT FOR EATING DISORDERS

Purpose: Medical input for eating disorder (ED) care is often most critical when a patient is struggling with treatment. Little is known about how patients and parents experience ED medical management. Clinical practice suggests that for many, it is fraught with emotion and ambivalence. Given their different perspectives on the ED, patients and parents are likely to have differing feedback about the experience of medical care. Improved awareness of the patient and parent experience in this setting might enhance support and impact engagement in treatment. The purpose of this investigation was to better understand the patient and parent experience of attending medical appointments in an outpatient Adolescent Medicine ED subspecialty clinic, with the goal of improving the clinical experience. Methods: A sample of patients and parents presenting to ED clinic completed optional surveys including responses on duration of ED care; the interpersonal experience in clinic on a 4-point Likert scale (i.e. "I believe my child feels supported"); and open-ended questions regarding likes/dislikes about coming to clinic. Open-ended questions were independently coded by co-authors; discrepancies were resolved using consensus. Data were collected as part of a larger quality improvement project, and exempted by the hospital's IRB. Results: Sixty-one patients and 60 parents of patients ages 11-22 completed optional surveys during regular clinic visits over a 2month period. Most respondents (67% of patients, 70% of parents) had been coming to clinic for under a year. Even if they did not agree with recommendations, patients felt that their medical providers were working in their best interest (84%), and parents agreed (92%). Fewer parents believed their child felt supported by the medical team (75%). Among the open-ended responses, only 9% of patients' and 2% of parents' comments reflected appreciation for physical function-related factors discussed during appointments. More often, patients and parents appreciated having a pleasant experience in clinic (35% and 34% of comments received, respectively); validation/ caring from staff (20% and 26%); encouragement in recovery (20% and 16%); and supportive problem solving/treatment recommendations (15% and 22%). Patients and parents disliked the demands of time/ scheduling (39% and 56%); unrealistic recommendations/services provided (36% and 15%); feeling stress/exclusion from the plan (16% and 17%); and some did not want to be in tr