Mind the gaps: therapists’ experiences of managing symptomatic hypermobility in Scotland

Abstract

Objectives To ascertain OT and PT experiences of managing Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) patients, specifically the training and confidence levels of therapists, use of evidence-based practice, accessibility of pain management and clinical psychology services, and perceived usefulness of a specialist centre in Scotland. Methods A mixed-method survey was distributed to Rheumatology OTs/PTs in Scotland. It included multiple choice and open text questions, which were analysed to reflect therapist’s experiences and perception of service need. Results We found that therapists in Scotland do have expertise in the management of HSD/hEDS patients; however, this expertise tends to be concentrated in secondary care, which makes it difficult for patients who are managed in primary care to access. The majority of respondents reported lack of access to external training (80%). There was difficulty in referral to pain management services (55%), and clinical psychology (28%) amongst adult therapists. Paediatric services provided considerably better access to these disciplines. Of note, the majority of respondents were in favour of a specialist centre in Scotland for the training and education of therapists (94.7%) and the diagnosis and management of complex HSD/hEDS patients (73.7%). Conclusion More research is urgently needed to evaluate the effectiveness of therapy interventions to underpin a national guideline so that we can improve outcomes for HSD/hEDS patients. A specialist centre with expert and engaged clinicians would be a valuable asset in coordinating patient focused research and conducting good quality clinical trials.

Hypermobility spectrum disorders: A review

“…A survey distributed to rheumatology occupational and physical therapists in Scotland found that they had expertise in the management of HSD/hEDS patients however, the expertise was concentrated in higher levels of care, making it a challenge for patients managed at a primary care level to access. [ 56 ] Training was cited as a significant issue, with most respondents citing a lack of access to external training (80%). [ 56 ] Second, patients with a subtype of the HSDs will likely have challenges establishing a meaningful relationship with health care providers.…”

“…[ 56 ] Training was cited as a significant issue, with most respondents citing a lack of access to external training (80%). [ 56 ] Second, patients with a subtype of the HSDs will likely have challenges establishing a meaningful relationship with health care providers. A lack of familiarity with the concept of HSDs (still referred to as BJHS in electronic medical records), the debilitating effect of chronic pain, extra-articular manifestations that mimic a systemic autoimmune or inflammatory arthritis, and years of diagnostic delay make it challenging for a patient to place trust in health care providers when for months or years they have been diagnosed with other pain syndromes.…”