Addressing the Gap: Establishing an Integrated Program for Ehlers-danlos Syndrome (EDS) Care

Research Objectives: To evaluate the effectiveness of an integrated program for Ehlers-Danlos syndromes (EDS) care in improving patient outcomes and enhancing their quality of life. Specifically, we aimed to assess the impact of the program on symptom management, functional status, and overall well-being among individuals diagnosed with EDS. Additionally, we sought to explore the feasibility and acceptability of implementing a multidisciplinary care approach tailored to the unique needs of EDS patients within our healthcare setting.

Design: Prospective observational study

Setting: Outpatient rehabiliation hospital

Participants: Patients diagnosed with Ehlers-Danlos syndromes

Interventions: The integrated EDS care program comprised a multidisciplinary team of healthcare professionals, including physicians, physical therapists, occupational therapists, and mental health specialists, who collaborated to provide comprehensive care tailored to the unique needs of each patient. Interventions included a combination of medical management, rehabilitation therapies, psychosocial support, and patient education aimed at improving symptom management, functional abilities, and overall quality of life.

Main Outcome Measures: The main outcome measures assessed in this study included changes in symptom severity, functional status, and quality of life among participants receiving care through the integrated program. Symptom severity was evaluated using validated assessment tools specific to EDS-related symptoms, while functional status and quality of life were assessed using standardized outcome measures.

Results: Preliminary results indicate significant improvements in symptom management, functional abilities, and overall quality of life among participants receiving care through the integrated EDS program. Specific outcome measures revealed reductions in pain intensity, improvements in joint stability and mobility, and enhanced psychosocial well-being among program participants.

Conclusions: The findings of this study suggest that the integrated program for EDS care implemented at Casa Colina Hospital and Centers for Healthcare has the potential to positively impact patient outcomes and enhance their overall quality of life. By adopting a multidisciplinary approach tailored to the unique needs of individuals with EDS, healthcare providers can effectively address the complex challenges associated with this condition and improve long-term outcomes for patients.

Author(s) Disclosures: The authors report no conflicts of interest related to this study. The research was supported by funding from the Casa Colina Foundation, which played no role in the study design, data collection, analysis, interpretation, or writing of the manuscript.