Hypermobility-related conditions are a commonly overlooked cause of chronic pain, disability and multimorbidity; average diagnosis takes 16 years. Hypermobility-related conditions affect all bodily systems – neurological, gastrointestinal, immunological, vascular, skin, joints. Chronic multimorbidity is a priority area for the health system, affecting one in four young adults and three in four older adults. Working-age women are overrepresented, with a life expectancy that is 15.2 years shorter than healthy women, and 40% higher work absenteeism. Multimorbidity is commonly considered in paediatric and geriatric populations, but remains under-recognised in working-age adults. High clinical prevalence and impact of multimorbidity is not reflected in healthcare services or most clinical guidelines.
While exercise prescription, for example, is an important part of chronic pain management and musculoskeletal bone health, it is often treated as a panacea, even in patient populations with known contraindications. In these patients, evidence-based management of pain and other individual conditions can be iatrogenic, typically informed by guidelines based on research that explicitly excludes patients with multiple diagnoses, medications, or recent surgeries. This international Delphi study aims to identify what helps and harms and top priorities in the management of hEDS and related multimorbidity from patients and expert clinicians.
Consensus was established among patients and expert clinicians on many priorities. However this consensus is not reflected in the clinical guidelines that the majority of health professional use to guide management decisions for this patient population, indicating that unrecognised/unmanaged hypermobility may be contributing to the global burden of multimorbidity and chronic pain. These findings expose the gaps between clinical guidelines and clinical reality for patients and clinicians who are managing hypermobility-related multimorbidity and pain. They also highlight the need to embed hypermobility- and multimorbidity-informed evidence in pain management, guidelines, education, screening programs, and the importance of clinically-relevant representation in health data and research sampling.