Diagnosis, Management and Assessment of Adults with Joint Hypermobility Syndrome: A UK-Wide Survey of Physiotherapy Practice

Abstract

Joint hypermobility syndrome (JHS) is a heritable disorder associated with excessive joint range of motion and pain in the absence of inflammatory joint disease. It is a relatively common cause of musculoskeletal pain but is generally understood to be under‐recognized and poorly managed in clinical practice. The present study therefore aimed to identify how JHS is diagnosed, managed and assessed in routine physiotherapy practice. A survey tool was developed from similar physiotherapy surveys of musculoskeletal practice, a review of the literature, and consultation with researchers and clinicians. Paper copies of the final survey were sent to 201 randomly selected secondary care organizations across the UK and an electronic version was advertised through physiotherapy professional networks. A total of 66 responses (80% women) were received from physiotherapists, with a wide range of clinical experience. Only 32% of respondents reported that they had received formal training in JHS management. The Brighton diagnostic criteria for JHS were not often used (only 31% of respondents). The stated aims of physiotherapy and the specific interventions employed seem well matched, with a focus on advice, education, exercise and self‐management. Although pain relief was not reported as a high priority in terms of treatment aims, pain was most often assessed as an outcome, suggesting a mismatch between what clinicians aim to achieve and what they measure. The results suggest that reported management strategies are broadly appropriate to long‐term musculoskeletal conditions but additional training specific to JHS may be required, particularly in diagnosis and assessment. Copyright © 2015 John Wiley & Sons, Ltd.

The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

“…A subsequent UK-wide survey conducted by the research team has revealed that this pattern of care fits very well with what is delivered by physiotherapists nationally. 39 By agreeing such broad guiding principles, the research team wanted to ensure that the physiotherapy intervention package developed stood the best chance of being adopted in practice, should it ultimately prove to be beneficial.…”

“…These were related primarily to the resource context within which most physiotherapy services operate 39 but also mirrored best practice as conducted at North Bristol NHS Trust. First, it was agreed that the intervention would be delivered on a one-to-one basis, as the needs of individual patients were considered to be so varied.…”

“…Detailed 'speaker notes' to supplement the training slides were developed. The training package was refocused to emphasise diagnosis and to incorporate findings from our UK-wide survey of physiotherapy practice 39 and findings from the stage 2 pilot of the intervention.…”

“…A 30-minute follow-up appointment reflected usual practice within the two trusts and is also typical of that delivered across the UK. 39 The spacing of the sessions was agreed with each patient on an individual basis, allowing some flexibility in delivery.…”

Symptoms in Daily Life and Activity Level of Women with and without Hypermobility

“…The results of the current study and the descriptions reported in the literature may indicate that the treatment of hypermobile persons should not be too localized or guided by a biomechanical approach only. There are some current studies, which took this into consideration such as Palmer et al [37]. They concluded in their study that the physiotherapeutic management of persons experiencing a hypermobility syndrome should be focused on advice, education, exercise and self-management, but more specific research is still required [21,37].…”