Knowledge, assessment, and management of adults with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type among flemish physiotherapists

Abstract

Physiotherapy plays a fundamental role in managing adults with the joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type (JHS/EDS-HT). However, it is a challenge for both the patient and the physiotherapist as the condition is poorly understood and treatment for JHS/EDS-HT is currently undefined. Insight into current practice is, therefore, necessary in order to establish baseline knowledge in this area and in the long term to improve the standard of patient care. Therefore, the purpose of this study was to evaluate current physiotherapists' knowledge of JHS/EDS-HT and to gain insight into current physiotherapy practice with emphasis on assessment, management, and treatment efficacy. Three hundred twenty-five Flemish physiotherapists participated in the study by filling out electronically a modified version of the "Hypermobility and Hypermobility Syndrome Questionnaire" (HHQ), which covered theoretical constructs such as general knowledge, assessment, management, and learning in relation to generalized joint hypermobility and JHS/EDS-HT. The results show that physiotherapists report a low level of confidence with regard to assessment and management of JHS/EDS-HT. Knowledge of hypermobility and JHS/EDS-HT is weak, especially regarding the features associated with JHS/EDS-HT. Many treatment approaches are used by physiotherapists with the majority showing preference for education, reassurance, muscle strengthening, proprioceptive and core stability training. Almost all approaches were perceived as being clinically effective by the physiotherapists, highlighting a lack of consensus. In conclusion, this study in Flemish physiotherapists confirms that JHS/EDS-HT is under-recognized, not well known and deemed difficult to treat. Further education is required and sought by the physiotherapists surveyed, and future research is needed.

Ehlers-Danlos syndrome hypermobility type is associated with rheumatic diseases

“…To date, the genetic basis of HEDS has not been elucidated and molecular diagnosis is not possible. HEDS patients may see multiple subspecialists without realizing a connection between their joint symptoms and multi-systemic involvement of the disease; they are often dismissed as hypochrondriacs, and report feelings of isolation from the lack of diagnosis49.…”

Ability of the Bristol Impact of Hypermobility questionnaire to discriminate between people with and without Joint Hypermobility Syndrome: a known‐group validity study

“…Despite its likely prevalence, there is poor understanding of the condition by physiotherapists and other health professionals (Rombaut et al, ). For example, 33.5% of Flemish physiotherapists reported having no idea about the impact of JHS on patients' lives (Rombaut et al, ) and 51% of UK physiotherapists reported having no training in hypermobility (Lyell, Simmonds, & Deane, ). When diagnosing JHS, physiotherapists most frequently used the Beighton score in conjunction with other assessment questions, with only 31% using the Brighton criteria (Palmer et al, ).…”

“…People with JHS present with such a wide array of signs and symptoms that they cannot be treated with one singular intervention (Malfait et al, ). Indeed, current treatment options include a very wide variety of pharmacological and non‐pharmacological interventions (Castori et al, ; Rombaut et al, ; Smith, Easton, et al, ). Evidence for the effectiveness of many interventions is either non‐existent or very limited (Castori et al, ; Engelbert et al, ; Palmer, Bailey, Barker, Barney, & Elliott, ; Smith, Easton, et al, ) but they are still frequently used (Rombaut et al, ), mainly based on clinical experience and patient feedback (Keer & Simmonds, ).…”

“…Indeed, current treatment options include a very wide variety of pharmacological and non‐pharmacological interventions (Castori et al, ; Rombaut et al, ; Smith, Easton, et al, ). Evidence for the effectiveness of many interventions is either non‐existent or very limited (Castori et al, ; Engelbert et al, ; Palmer, Bailey, Barker, Barney, & Elliott, ; Smith, Easton, et al, ) but they are still frequently used (Rombaut et al, ), mainly based on clinical experience and patient feedback (Keer & Simmonds, ). JHS is considered difficult to manage (Castori et al, ; Engelbert et al, ) but physiotherapy is a mainstay of treatment and aims to reduce pain, improve joint stability and facilitate self‐management (Keer & Simmonds, ).…”

The views of people with joint hypermobility syndrome on its impact, management and the use of patient‐reported outcome measures. A thematic analysis of open‐ended questionnaire responses

“…Physiotherapy is the mainstay of treatment for JHS (Palmer et al, ). However, few physiotherapists have received JHS‐specific training, and so they are unfamiliar with its presentation and lack confidence in its management (Lyell, Simmonds, & Deane, ; Palmer, Cramp, Lewis, Muhammad, & Clark, ; Rombaut et al, ). Physiotherapists also reported limited use of validated diagnostic and assessment tools (Palmer et al, ).…”