Perceptions and experiences of allied health professionals of fabric orthoses for people with joint hypermobility syndromes: a qualitative study

Abstract

Background/Aims Hypermobility spectrum disorders and hypermobile Ehlers–Danlos syndrome are multisystem, connective tissue disorders, associated with problems such as joint hyperextensibility, tissue fragility, poor proprioception and pain. Fabric orthoses might improve proprioception and assist with joint protection. No previous research has investigated this possibility. This study aimed to explore the perceptions and experiences of experts with experience of fabric orthoses who have used fabric orthoses with individuals with hypermobility spectrum disorders and hypermobile Ehlers–Danlos syndrome. Methods A total of six experts in fabric orthoses and hypermobility spectrum disorders/hypermobile Ehlers–Danlos syndrome participated in semi-structured interviews. A thematic analysis was undertaken by two analysers. Themes were validated with a member checking exercise involving three of the original participants. Results Three themes were identified. The first theme, ‘it is immediate’, described the reported positive effects when the orthosis is first donned. The second theme described a proposed mechanism of effect in which improved proprioception and realignment work together to support improved joint stability. The third theme, ‘tips for success’, captured ways in which effectiveness and acceptability are maximised, with importance ascribed to collaborative assessment. Conclusions Fabric orthoses have the potential to be effective in people with hypermobile Ehlers–Danlos syndrome or hypermobility spectrum disorders. This study is to inform futher research into the use of fabric orthoses. Further research could prioritise short-term effect, using mixed methods to explore users’ experiences alongside measures of pain, joint stability and function. Crossover studies could compare custom-made orthoses vs off-the-shelf, or orthoses with directional support vs compression alone. If short-term studies support effectiveness and acceptability, longer-term studies could include the role of fabric orthoses in prevention of disability.