City Research Online

Abstract

Background: Haemophilia is a rare and lifelong bleeding disorder. In its untreated state it is associated with musculoskeletal bleeding, which leads to the development of painful haemophilic arthritis. Chronic pain associated with arthritis is reported by between 30-71% of people with haemophilia (PWH), yet there remains limited guidance on management approaches, including physiotherapy. It is unclear if an approach using exercise could be effective or acceptable to PWH.

Methods: In keeping with the Medical Research Council’s framework for developing complex interventions, an extensive literature review and a qualitative study with PWH and healthcare professionals identified key uncertainties in the current evidence base. A stakeholder-informed theory of change approach that integrated behavioural theory, created a programme theory. This informed the development of a novel, mixed methods, exercise based, telerehabilitation intervention for use in people with severe haemophilia and chronic pain.

Results: The systematic review found low quality of evidence of effect for physiotherapy interventions on pain, function, and quality of life. The qualitative study highlighted that pain existed in an uneasy coalition with haemophilia, PWH wanted support to be able to do more despite their pain, and exercise as an approach was broadly acceptable. The programme theory identified key enablers, activities and behaviour change techniques likely to achieve the outcomes of the study. Ten PWH participated in a multi-site, non randomised study with a nested semi-structured interview. Over 6 weeks, a real time telerehabilitation intervention was delivered using the MS Teams platform by specialist haemophilia physiotherapists known to the participants. The mixed method data analysis confirmed that the intervention was feasible, acceptable, and safe for PWH.

Conclusions: This thesis adds to understanding of the pain experiences in PWH. It furthers the evidence base for non-medical approaches for pain management in PWH and has identified areas of future research need.

Publication Type:	Thesis (Doctoral)
Subjects:	Q Science > Q Science (General) R Medicine > R Medicine (General) R Medicine > RZ Other systems of medicine
Departments:	School of Health & Medical Sciences > Institute of Medical, Biomedical and Allied Health Education School of Health & Medical Sciences > School of Health & Medical Sciences Doctoral Theses Doctoral Theses

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