Affiliation:
1. Royal Free London NHS Foundation Trust
2. Royal Free Hampstead NHS Trust: Royal Free London NHS Foundation Trust
3. Haemnet
4. The Haemophilia Society
5. East Kent Hospitals University NHS Foundation Trust
6. Kingston University Faculty of Health Social Care and Education: Kingston and St George's Faculty of Health Social Care and Education
Abstract
Abstract
Background Chronic pain is reported by between 30–71% of people with haemophilia (PWH). Exercise is shown to be effective for pain management in both osteo- and rheumatoid arthritis, but it remains unclear if such an approach is effective or acceptable to PWH. The aim of this study was to evaluate the feasibility and acceptability of a telerehabilitation exercise intervention for PWH living with chronic pain.Methods This was a non-randomised, pre-post feasibility design, with a nested qualitative study. People with severe haemophilia > 18 years, living with chronic pain were recruited. The intervention comprised low impact/ moderate intensity, individualised exercises (6 individual, 6 group sessions) focussed on cardiovascular and strengthening activity and three knowledge sharing and discussion sessions. Primary objectives relating to feasibility and acceptability included recruitment rate, safety, adherence, fidelity of delivery and acceptability of the intervention. Preliminary evaluation of pain, function and quality of life was a secondary objective. In keeping with feasibility design, descriptive statistics were used.Results Ten PWH were recruited and completed the intervention. Nine agreed to be interviewed post intervention. Attendance at individual sessions was 84.5% compared to 52.1% for the group sessions (feasibility partially achieved). Outcome measures were successfully completed for 100% at baseline, 70% at intervention end and 60% at 3 month follow up (feasibility not achieved). No serious adverse events were recorded (feasibility achieved). Group median values in outcome measures (pain, function, quality of life) showed minimal change post intervention. Participant interviews highlighted high levels of enjoyment, confidence in continuing exercises independently, and positive views of virtual delivery and condition specific exercise (intervention was acceptable). Participants reported that outcome measures failed to capture changes that mattered to them.Conclusions An exercise based telerehabilitation intervention for PWH who live with chronic pain is safe, feasible and acceptable. This study furthers the evidence base for non-medical approaches for pain management in PWH. Further work is needed to refine the usefulness and content of the knowledge sharing sessions, and to determine what outcome measures are best suited for rehabilitation interventions such as this.Trial registration : Study was prospectively registered on 9 July 2021: International Standard Randomised Controlled Trial Number ISRCTN 17454597.
Publisher
Research Square Platform LLC
Reference60 articles.
1. Berntorp E, Fischer K, Hart DP, Mancuso ME, Stephensen D, Shapiro AD, et al. Haemoph Nat Reviews Disease Primers. 2021;7(1):45.
2. The Hemophilias — From Royal Genes to Gene Therapy;Mannucci PM;N Engl J Med,2001
3. Bolton-Maggs PHB, Pasi KJ, Haemophilias A. and B The Lancet. 2003;361(9371):1801–9.
4. Diagnosis and care of patients with mild haemophilia: practical recommendations for clinical management;Benson G;Blood Transfus,2018
5. Haemophilia and joint disease: pathophysiology, evaluation, and management;Knobe K;J Comorb,2011