Abstract

Severe and Enduring Eating Disorders (SEED), in particular SEED-Anorexia Nervosa (SE-AN), may represent the most difficult disorder to treat in psychiatry. Furthermore, the lack of empirical research in this patient group, and, consequently the lack of guidelines, call for an urgent increase in research and discussion within this field. Meanwhile experts concur that effective care should be structured in a collaborative manner. To identify the challenges in providing care to patients with SE-AN in the Dutch healthcare context, and propose a collaborative care treatment model to address these issues. A pragmatic mixed-method approach was used, structured as follows: (1) Identifying perceived barriers and treatment needs from the viewpoint of both patients and eating disorder healthcare professionals through an evaluation questionnaire; (2) Investigating current treatment practices for SEED/SE-AN via benchmarking; (3) Gaining insight into the optimal structure and content of care by interviewing network partners and experts-by-experience. Based on these findings, and drawing from literature on severe and enduring disorders, a treatment model for SE-AN was proposed and implemented. The key challenges identified included a lack of knowledge about eating disorders among network partners, treatment ambivalence among patients and poor collaboration between professionals. The proposed model enhances self-management and collaborative relationships with healthcare providers, offers user-friendly and practical guidance, and aims at stabilization, reducing relapses, deterioration, and readmissions, thereby being cost-effective. Importantly, the model operates across levels of care (primary, secondary, tertiary). This study, describing a collaborative care program for SE-AN, developed and implemented in a highly specialized treatment center for eating disorders, sets the stage for further explanatory/efficacy research to build on the findings in this study, with the following aims: addressing the critical gap in care for SEED/SE-AN, improving better healthcare organization, reducing relapse rates, and lowering costs for this often overlooked patient group.

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