The need for primary care providers in the clinical management of hypermobility spectrum disorders and ehlers-danlos syndrome: a call to action

• Published in: Rheumatology international 2024-11, Vol.44 (11), p.2273-2278
• Main Authors: Black, William R., Black, Lora L., Goldstein-Leever, Alana, Fox, Lisa S., Pratt, Laura R., Jones, Jordan T.
• Format: Article
• Language: English
• Subjects: Collaboration; Ehlers-Danlos Syndrome - diagnosis; Ehlers-Danlos Syndrome - therapy; Expert Opinion; Humans; Joint Instability - diagnosis; Joint Instability - therapy; Medicine; Medicine & Public Health; Patient Care Team; Patients; Primary care; Primary Health Care; Rheumatology
• ISSN: 1437-160X; 0172-8172; 1437-160X
• DOI: 10.1007/s00296-024-05676-4

Patients with joint-hypermobility and joint-hypermobility spectrum disorders (HSD), including hypermobile Ehlers-Danlos Syndromes (EDS) present numerous co-morbid concerns, and multidisciplinary care has been recommended. The complexity of these patient’s needs and increased demand for medical services have resulted in long delays for diagnosis and treatment and exhausted extant clinical resources. Strategies must be considered to ensure patient needs are met in a timely fashion. This opinion piece discusses several potential models of care for joint-hypermobility disorders, several ways in which primary providers can be involved, and argues that primary providers should be an essential and integrated part of the management of these patients, in collaboration with multidisciplinary teams and pediatric subspecialists. We review several strategies and educational opportunities that may better incorporate primary providers into the care and management of these patients, and we also discuss some of the limitations and barriers that need to be addressed to improve provision of care. This includes establishing primary care physicians as the medical home, providing initial diagnostic and treatment referrals while connecting patients with specialty care, and collaboration and coordination with multi-disciplinary teams for more complex needs. Several barriers exist that may hamper these efforts, including a lack of available specialty trainings for providers interested in providing care to patients with EDS and HSD, a lack of expertly derived consensus guidelines, and limited time resources in extant primary care practices. Also, primary providers should have an active voice in the future for the further consideration and development of these presented strategies.