Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study

被引:0
作者
Mclaughlin, Paul [1 ,2 ]
Chowdary, Pratima [1 ,2 ]
Khair, Kate [3 ]
Smith, Clive [4 ]
Stephensen, David [5 ]
Hurley, Michael [6 ]
机构
[1] Royal Free London NHS Fdn Trust, Katharine Dormandy Haemophilia Ctr & Thrombosis Un, London, England
[2] UCL, Dept Acad Haematol, London, England
[3] Haemnet, London, England
[4] Haemophilia Soc, London, England
[5] Canterbury Christ Church Univ, Sch Med Hlth & Social Care, Canterbury, Kent, England
[6] St Georges Univ London, London, England
基金
美国国家卫生研究院;
关键词
Haemophilia; Pain; Exercise; Rehabilitation; Telerehabilitation; Feasibility; QUALITY-OF-LIFE; REPORTED OUTCOME INSTRUMENTS; CHRONIC KNEE PAIN; FUNCTIONAL IMPAIRMENT; US ADULTS; ARTHROPATHY; PROGRAM; CARE;
D O I
10.1186/s40814-024-01550-z
中图分类号
R-3 [医学研究方法]; R3 [基础医学];
学科分类号
1001 ;
摘要
Background Chronic pain is reported by between 30 and 71% of people with haemophilia (PWH). Exercise is shown to be effective for pain management in other arthritides, 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 multisite, 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 12 low-impact/moderate intensity, individualised exercise sessions and 3 knowledge-sharing and discussion sessions. Primary objectives assessed according to predefined progression criteria were as follows: (a) recruitment rate (5 participants enrolled per site over 8 weeks), (b) adherence (>= 75% participants would adhere to >= 75% of sessions), (c) follow-up rate (>= 75% completion of self-reported measures), (d) fidelity (intervention delivered as described in protocol) and (e) safety (<= 30% participants would report adverse events). Acceptability was evaluated from thematic analysis of post-intervention participant interviews. Preliminary evaluation of self-reported pain, function and quality of life (QoL) was a secondary objective. Results were reported using descriptive statistics integrated with qualitative findings. 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. Outcome measures were successfully completed for 100% at baseline, 70% at intervention end and 60% at 3-month follow-up. No serious adverse events were recorded. Group median values in outcome measures (pain, function, QoL) 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. Conclusions Recruitment rate and safety met the predefined progression criteria. Fidelity partially met the progression criteria, but the follow-up rate for self-reported measures did not. The study was acceptable to both participants and physiotherapists. Further intervention development is needed to review approaches to outcome measure collection and refine the usefulness of the knowledge-sharing sessions.
引用
收藏
页数:23
相关论文
共 63 条
[1]   Safety and effectiveness of telerehabilitation program in people with severe haemophilia in Chile. A qualitative study [J].
Aliaga-Castillo, Veronica ;
Horment-Lara, Giselle ;
Contreras-Sepulveda, Felipe ;
Cruz-Montecinos, Carlos .
MUSCULOSKELETAL SCIENCE AND PRACTICE, 2022, 60
[2]  
[Anonymous], 2020, Inherited and Acquired Haemophilia and other Bleeding Disorders Peer Review ProgrammeOverview Report Report
[3]   Living with haemophilia and von Willebrand's: A descriptive qualitative study [J].
Barlow, Julie H. ;
Stapley, Jacqueline ;
Ellard, David R. .
PATIENT EDUCATION AND COUNSELING, 2007, 68 (03) :235-242
[4]   Construct validity of patient-reported outcome instruments in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study [J].
Batt, Katharine ;
Recht, Michael ;
Cooper, David L. ;
Iyer, Neeraj N. ;
Kempton, Christine L. .
PATIENT PREFERENCE AND ADHERENCE, 2017, 11 :1369-1380
[5]   An exploration of health-related quality of life in adults with haemophilia - a qualitative perspective [J].
Beeton, K ;
Neal, D ;
Lee, C .
HAEMOPHILIA, 2005, 11 (02) :123-132
[6]   Diagnosis and care of patients with mild haemophilia: practical recommendations for clinical management [J].
Benson, Gary ;
Auerswald, Guenter ;
Dolan, Gerry ;
Duffy, Anne ;
Hermans, Cedric ;
Ljung, Rolf ;
Morfini, Massimo ;
Salek, Silva Zupancic .
BLOOD TRANSFUSION, 2018, 16 (06) :535-544
[7]   Haemophilia [J].
Berntorp, Erik ;
Fischer, Kathelijn ;
Hart, Daniel P. ;
Mancuso, Maria Elisa ;
Stephensen, David ;
Shapiro, Amy D. ;
Blanchette, Victor .
NATURE REVIEWS DISEASE PRIMERS, 2021, 7 (01)
[8]   Telemedicine and telerehabilitation: current and forthcoming applications in haemophilia [J].
Boccalandro, Elena A. ;
Dallari, Giuseppe ;
Mannucci, Pier Mannuccio .
BLOOD TRANSFUSION, 2019, 17 (05) :385-390
[9]   Haemophilias A and B [J].
Bolton-Maggs, PHB ;
Pasi, KJ .
LANCET, 2003, 361 (9371) :1801-1809
[10]  
Braun V, 2006, Qualitative Research in Psychology, V3, P77, DOI [DOI 10.1191/1478088706QP063OA, 10.1191/1478088706qp063oa, DOI 10.1080/14780887.2020.1769238]