The effectiveness of group physiotherapy interventions for hypermobile ehlers-danlos syndrome (heds) and hypermobility spectrum disorders (hsd): a service evaluation project

Paxton, Dolcie M., Lewis, Rachel, Palmer, Shea and Clark, Emma M. 2020. The effectiveness of group physiotherapy interventions for hypermobile ehlers-danlos syndrome (heds) and hypermobility spectrum disorders (hsd): a service evaluation project. Rheumatology 59 (Supple) , keaa111.083,. 10.1093/rheumatology/keaa111.083

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Abstract

Background HSD and hEDS are complex and multisystemic disorders of connective tissue with arthralgia and other musculoskeletal features being acknowledged in the 2017 diagnostic criteria. Physiotherapy is a core component of management but there is no clear consensus regarding its effectiveness. For the last 21/2 years we have run an NHS group-based physiotherapy intervention consisting of four sessions focussing on patient education, exercises and lifestyle advice. The aim of this medical student-led project was to evaluate this service by canvassing patients' opinions and experiences and asking them to propose ways of improving care. Methods The physiotherapy intervention is open to all adults diagnosed with HSD and hEDS by rheumatologists or physiotherapists. 90 patients were invited to attend, and eleven groups were run between July 2017 and February 2019. To evaluate the service, patients were asked to complete an anonymised questionnaire which contained Likert scales (poor, average, good, very good or excellent) for four areas: (1) information on hypermobility; (2) pace of sessions; (3) physiotherapist's knowledge; and (4) relevance. In addition, free-text boxes asked about the patients' experiences of the course (likes, dislikes and suggested changes for future courses), and lessons learnt (lifestyle changes implemented, and take-home messages from the course). Results were recorded and analysed for recurring themes. Results 43 patients attended all four classes and 40 questionnaires were completed and returned. 100% rated the information on hypermobility and physiotherapist's knowledge as good, very good or excellent. Similarly, 94% rated the pace of sessions, and 97% the relevance of sessions as good, very good or excellent. Analysis of the free-text fields revealed three major themes: meeting people; effectiveness of the course; and lack of written information. Patients found it particularly valuable to meet others with similar concerns and experiences. They felt able to support each other by sharing and learning together, making them feel more comfortable with their condition. In terms of effectiveness of the course, they valued the information delivered about the condition and fatigue management. Patients reported benefit from learning exercises and relaxation techniques that they have built into their daily routines. Some patients came to realise that they can be active without causing injury and therefore incorporated regular exercise into their lifestyle. All patients reported actively implementing advice provided throughout the course. However, there was a lack of written information: patients requested leaflets relevant to the contents of classes. They also highlighted lack of information about the widespread effects of HSD/hEDS that they could share with friends, family and work colleagues. Conclusion Patients particularly valued learning alongside others with the same condition, and many reported actively implementing advice provided. An important area for development was written patient education and a resource pack needs generating to improve this.

Item Type:	Article
Date Type:	Published Online
Status:	Published
Schools:	Healthcare Sciences
Last Modified:	05 Apr 2023 15:15
URI:	https://orca.cardiff.ac.uk/id/eprint/158209

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