Gap analysis investigating healthcare professionals' skills and knowledge for pain management in haemophilia-A qualitative study

Journal article


McLaughlin, P., Chowdary, P., Harrison, C., Stephensen, D. and Roussel, N. 2025. Gap analysis investigating healthcare professionals' skills and knowledge for pain management in haemophilia-A qualitative study. Haemophilia. https://doi.org/10.1111/hae.70112
AuthorsMcLaughlin, P., Chowdary, P., Harrison, C., Stephensen, D. and Roussel, N.
Abstract

Introduction
People with haemophilia continue to experience pain impacting activities of daily living despite the advances in haemostatic treatments. Although guidelines exist, pain management in the clinical setting remains inadequate. It is unclear why this gap in practice persists. This study aimed to explore the practice and experience of pain management by haemophilia healthcare professionals (HCPs) to better understand perceived competency and barriers/facilitators to appropriate care.

Methods
European HCPs working ≥ 3 years in haemophilia care were invited to participate (haematologists, nurses, physiotherapists and psychosocial professionals). Data were collected using profession-specific focus groups and semi-structured individual interviews, recorded and transcribed. The data were analysed using reflexive thematic analysis.

Results
Twenty-three HCPs (6 haematologists, 7 nurses, 6 physiotherapists, 4 psychosocial professionals) from 10 European countries agreed to participate. Four themes were constructed: (1) Defining who is responsible: the challenges in multidisciplinary team provision for good pain management; (2) the concept of pain and its management exists in multiple temporalities; (3) aspirations for better pain management are limited by prevailing biomedicalism; (4) pain management can be better—knowledge and experience improves confidence.

Discussion
These data demonstrate a gap in confidence in the delivery of effective pain management, influenced by individual knowledge and skills and wider geographical determinants of healthcare delivery. There is a need for services to establish who is responsible for pain management and better understand professional role identity. Mechanisms to support the implementation of better pain care in haemophilia need to be explored.

KeywordsHaemophilia; Healthcare professionals; Pain management; Qualitative research
Year2025
JournalHaemophilia
PublisherWiley
ISSN1351-8216
1365-2516
Digital Object Identifier (DOI)https://doi.org/10.1111/hae.70112
Official URLhttps://onlinelibrary.wiley.com/doi/full/10.1111/hae.70112
FunderNovo Nordisk 'Access to Insight' Research Grant
Publication dates
Online15 Aug 2025
Publication process dates
Accepted02 Aug 2025
Deposited08 Sep 2025
Accepted author manuscript
License
File Access Level
Open
Supplemental file
File Access Level
Restricted
Output statusPublished
Permalink -

https://repository.canterbury.ac.uk/item/9vvx9/gap-analysis-investigating-healthcare-professionals-skills-and-knowledge-for-pain-management-in-haemophilia-a-qualitative-study

Restricted files

Accepted author manuscript

  • 1314
    total views
  • 1
    total downloads
  • 3
    views this month
  • 0
    downloads this month

Export as

Related outputs

The effects of traumatic pain memories on current pain experience in men with hemophilia.
Wells, Anna, Gray, Debra, Husted, Margaret and Stephensen, David 2025. The effects of traumatic pain memories on current pain experience in men with hemophilia. Canadian Journal of Pain. 9 (1), p. 2530966. https://doi.org/10.1080/24740527.2025.2530966
Emicizumab utilization, safety, and outcomes in people with severe hemophilia and no inhibitors: 3-year follow-up. A report from the UK Haemophilia Centre Doctors' Organisation.
Wall, Caroline, Xiang, Hua, Palmer, Ben, Chowdary, Pratima, Collins, Peter W, Gorman, Richard, Matthias, Mary, Percy, Charles, Sartain, Paul, Shapiro, Susan, Stephensen, David, Talks, Kate and Hay, Charles R M 2025. Emicizumab utilization, safety, and outcomes in people with severe hemophilia and no inhibitors: 3-year follow-up. A report from the UK Haemophilia Centre Doctors' Organisation. Research and Practice in Thrombosis and Haemostasis. 9 (6), p. 103164. https://doi.org/10.1016/j.rpth.2025.103164
Learning to swim with back pain: A qualitative study of swimmers with chronic low back pain
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2025. Learning to swim with back pain: A qualitative study of swimmers with chronic low back pain. International Journal of Qualitative Studies on Health and Well-being. 20, p. 2474357. https://doi.org/10.1080/17482631.2025.2474357
Joint health and physical activity in people with haemophilia A without factor VIII inhibitors before switching to emicizumab prophylaxis: Beyond ABR study interim analysis
Holzhauer, S, Castaman, G, Di Minno, MN D, Kruse-Jarres, R, Stephensen, D, Lobet, S, Robson, S, Brocchieri, C and Jiménez-Yuste, V 2025. Joint health and physical activity in people with haemophilia A without factor VIII inhibitors before switching to emicizumab prophylaxis: Beyond ABR study interim analysis. Hämostaseologie. 45 (S 01), pp. S47-S48. https://doi.org/10.1055/s-0044-1801616
Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study.
McLaughlin, P., Chowdary, P., Khair, K., Smith, C., Stephensen, D. and Hurley, M. 2024. Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study. Pilot and Feasibility Studies. 10, p. 128. https://doi.org/10.1186/s40814-024-01550-z
A clinical practice guideline for primary care physiotherapy in patients with haemophilia
Blokzijl, J., Pisters, Martijn F., Apsdahl, M., de Boer, Wypke, Dybvik Matlary, Ruth Elise, Douma‐van Riet, Danielle, de Kleijn, Piet, Lobet, Sébastien, Loughnane, Paula, McLaughlin, P., Bladen, M., Roche, Sheila, Stephensen, D., van Vlimmeren, Leo, van Vulpen, Lize M. D. and Timmer, M. 2024. A clinical practice guideline for primary care physiotherapy in patients with haemophilia. Haemophilia. https://doi.org/10.1111/hae.15065
Survey of the barriers, enablers and preferences to swimming for people with chronic lower back pain
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2024. Survey of the barriers, enablers and preferences to swimming for people with chronic lower back pain. Journal of Aquatic Physical Therapy . 32 (2), pp. 16-24. https://doi.org/10.1097/PXT.0000000000000038
CSP2023: 379 The development of a swimming programme for people with chronic low back pain using a modified Delphi technique
de Vivo, M., Stephensen, D. and Mills, H. 2024. CSP2023: 379 The development of a swimming programme for people with chronic low back pain using a modified Delphi technique. Physiotherapy. 123, p. e202. https://doi.org/10.1016/j.physio.2024.04.252
CSP2023: 217 Barriers, enablers, and preferences to swimming for people with chronic low back pain
Oakes, H., de Vivo, M., Mills, H. and Stephensen, D. 2024. CSP2023: 217 Barriers, enablers, and preferences to swimming for people with chronic low back pain. Physiotherapy. 123, p. e28. https://doi.org/10.1016/j.physio.2024.04.035
Using evidence‐based co‐design to develop a hybrid delivered exercise intervention that aims to increase confidence to exercise in people with haemophilia
Taylor, S., Barker, Karen, Stephensen, D. and Williamson, Esther 2024. Using evidence‐based co‐design to develop a hybrid delivered exercise intervention that aims to increase confidence to exercise in people with haemophilia. Haemophilia. https://doi.org/10.1111/hae.14972
Expert United Kingdom consensus on the preservation of joint health in people with moderate and severe haemophilia A: A modified Delphi panel
Laffan, M., McLaughlin, P., Motwani, J., Alamelu, J., Austin, S. Classey, S., Dolan, G., Eales, M., Gooding, R., Grainger, J., Harrison, C., Jones, A., Kelly, A., Oyesiku, L., Rodgers, R., Stephensen, D., Talks, K., Sonecha, S. and Danquah, A. 2024. Expert United Kingdom consensus on the preservation of joint health in people with moderate and severe haemophilia A: A modified Delphi panel. Haemophilia. https://doi.org/10.1111/hae.14934
A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts
Benson, G., Bhandari, T., Gomez, K., Holder, K.A., Stephensen, D., Wilkinson, A. and Mangles, S. 2023. A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts. Journal of Haemophilia Practice. 10 (1), pp. 138-154. https://doi.org/10.2478/jhp-2023-0022
Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK
Boyse, S., Fletcher, S., Jones, A., Kohli, R., Mangles, S., Ong, M., Pollard, D., Sivasubramaniyam, S., Stephensen, D., Stoner, N. and Kazmi, R. 2023. Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK. Orphanet Journal of Rare Diseases. 18 (366). https://doi.org/10.1186/s13023-023-02977-y
Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia
McLaughlin, P., Hurley, M., Chowdary, P., Khair, K., Smith, C. and Stephensen, D. 2023. Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia. Orphanet Journal of Rare Diseases. 18 (376). https://doi.org/10.1186/s13023-023-02988-9
How to assess, detect, and manage joint involvement in the era of transformational therapies: Role of point-of-care ultrasound
Stephensen, D., DiMinno, M. N. D., Martinoli, C., Pasta, G., DelaCorte-Rodriguez, H., Samy, I., Timmer, M. and Winburn, I. 2023. How to assess, detect, and manage joint involvement in the era of transformational therapies: Role of point-of-care ultrasound. Haemophilia. 29, pp. 1-10. https://doi.org/10.1111/hae.14657
Identifying performance-based outcome measures of physical function in people with haemophilia (IPOP)
Melanie Bladen, Hannah Harbidge, Wendy Drechsler, Gaetan Duport, Ryan Mahaffey, Janjap van der Net, Sofía Pérez-Alenda, Fionnuala Sayers, Karen Strike, Merel Timmer and David Stephensen 2023. Identifying performance-based outcome measures of physical function in people with haemophilia (IPOP). Haemophilia. 29 (6), pp. 1611-1620. https://doi.org/10.1111/hae.14886
Accreditation model of European Haemophilia Centres in the era of novel treatments and gene therapy
Stephensen, D., Boban, A., Baghaei, F., Fijnvandraat, K., Klamroth, R., Miesbach, W., Kavanagh, M., Noone, D., Crato, M. and Peyvandi, F. 2023. Accreditation model of European Haemophilia Centres in the era of novel treatments and gene therapy. Haemophilia. https://doi.org/10.1111/hae.14887
Wearable activity trackers in young people with haemophilia: What needs to be considered?
Stephensen, D., Dodd, C. and Hashem, F. 2023. Wearable activity trackers in young people with haemophilia: What needs to be considered? Haemophilia. 29 (3), pp. 942-945. https://doi.org/10.1111/hae.14790
Twelve-month prevalence of haemarthrosis and joint disease using the Haemophilia Joint Health score: evaluation of the UK National Haemophilia Database and Haemtrack patient reported data: an observational study
Wilkins, R., Stephensen, D., Siddle, H., Scott, M. J.,, Xiang, H., Horn, E., Palmer, B., Chapman, G. J., Richards, M., Walwyn, R. and Redmond, A. 2022. Twelve-month prevalence of haemarthrosis and joint disease using the Haemophilia Joint Health score: evaluation of the UK National Haemophilia Database and Haemtrack patient reported data: an observational study. BMJ Open. 12, p. 3052358. https://doi.org/10.1136/bmjopen-2021-052358
European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients
de Kleijn, P, Duport, G., Jansone, K., Marinić, M., McLaughlin, P., Noone, D., Ramishvili, L., Tollwé, A. and Stephensen, D. 2022. European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients. Haemophilia. 28 (4), pp. 649-655. https://doi.org/10.1111/hae.14566
Pain memories: A new concept to consider in the management of chronic pain in people with haemophilia
Stephensen, D., Wells, A. J., Whitaker, S., Gray, D., Mangles, S. and Hislop-Lennie, K. 2022. Pain memories: A new concept to consider in the management of chronic pain in people with haemophilia. Haemophilia. 28 (2), pp. e46-48. https://doi.org/10.1111/hae.14480
The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study
Stephensen, D., McLaughlin, P., Hurley, M., Chowdary, P. and Khair, K. 2022. The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study. Disability and Rehabilitation. 44 (26), pp. 8420-8428. https://doi.org/10.1080/09638288.2021.2018054
How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study
Stephensen, D., McLaughlin, P., Hurley, M., Chowdary, P. and Khair, K. 2022. How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study. Disability and Rehabilitation. 44 (26), pp. 8412-8419. https://doi.org/10.1080/09638288.2021.2018053
The role of physiotherapy in the new treatment landscape for haemophilia
Sébastien Lobet, Merel Timmer, Christoph Königs, David Stephensen, Paul McLaughlin, Gaetan Duport, Cédric Hermans and Maria Elisa Mancuso 2021. The role of physiotherapy in the new treatment landscape for haemophilia. Journal of Clinical Medicine. 10 (2822). https://doi.org/10.3390/jcm10132822
Haemophilia
Berntorp, E., Fischer, K., Hart, D.P., Mancuso, M.E., Stephensen, D., Shapiro, A.D. and Blanchette, V. 2021. Haemophilia. Nature Reviews Disease Primers. 7 (45). https://doi.org/10.1038/s41572-021-00278-x
Managing flare-ups: The experience of a group of swimmers with persistent low back pain
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2021. Managing flare-ups: The experience of a group of swimmers with persistent low back pain. Physiotherapy. 114 (S1), pp. E220-E221. https://doi.org/10.1016/j.physio.2021.12.208
Do people with long-term pain swim? Understanding participation using the active lives survey
Oakes, H., De Vivo, M., Stephensen, D. and Mills, H. 2021. Do people with long-term pain swim? Understanding participation using the active lives survey. Physiotherapy. 113, p. e11. https://doi.org/10.1016/j.physio.2021.10.235
Pool closures during the COVID-19 pandemic and the impact on low back pain management
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2021. Pool closures during the COVID-19 pandemic and the impact on low back pain management.
Physiotherapy interventions for pain management in haemophilia: A systematic review
Hurley, M., Chowdary, P., Khair, K., McLaughlin, P. and Stephensen, D. 2020. Physiotherapy interventions for pain management in haemophilia: A systematic review. Haemophilia. https://doi.org/10.1111/hae.14030
The importance of cancer patients' functional recollections to explore the acceptability of an isometric-resistance exercise intervention: A qualitative study
Hashem, F., Corbett, K., Stephensen, D., Swaine, I.L., Ali, H. and Hutchins, I. 2020. The importance of cancer patients' functional recollections to explore the acceptability of an isometric-resistance exercise intervention: A qualitative study. Health Science Reports. https://doi.org/10.1002/hsr2.186
Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals
Hashem, F., Stephensen, D., Drechsler, W.I., Bladen, M., Carroll, L., Pellatt-Higgins, T. and Saloniki, E.C. 2020. Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals. Health Expectations. 23 (5), pp. 1350-1361. https://doi.org/10.1111/hex.13119
Acceptability and feasibility of an isometric resistance exercise program for abdominal cancer surgery: An embedded qualitative study
Stephensen, D., Hashem, F., Bates, A., Pellatt-Higgins, T., Hobbs, R.P., Hopkins, M., Woodward, H., Stavropoulou, C., Swaine, I.L. and Ali, H. 2020. Acceptability and feasibility of an isometric resistance exercise program for abdominal cancer surgery: An embedded qualitative study. Cancer Control. https://doi.org/10.1177/1073274820950855
Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice
McLaughlin, P., Aspdahl, M., Matlary, R. E. D., Grinda, N., Katzerova, M., O'Mahony, B., Stephensen, D. and Lobet, S. 2020. Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice. Haemophilia. 2021 (27), pp. 284-286. https://doi.org/10.1111/hae.14150
Results of feasibility and safety of randomised controlled trial of a musculoskeletal exercise intervention versus usual care for children with haemophilia
Bladen, M., Carroll, L., Dodd, C., Drechsler, W., Hashem, F., Patel, V., Pellatt-Higgins, T., Saloniki, I. and Stephensen, D. 2020. Results of feasibility and safety of randomised controlled trial of a musculoskeletal exercise intervention versus usual care for children with haemophilia. Haemophilia. 2020 (26), pp. 223-225. https://doi.org/10.1111/hae.14026
Natural history of radiographic first metatarsophalangeal joint osteoarthritis: A nineteen‐year population‐based cohort study
Bowen, C., Gates, Lucy, McQueen, Peter, Daniels, Maxine, Delmestri, Antonella, Drechsler, Wendy, Stephensen, David, Doherty, Michael and Arden, Nigel 2020. Natural history of radiographic first metatarsophalangeal joint osteoarthritis: A nineteen‐year population‐based cohort study. Arthritis Care & Research. 72 (9), pp. 1224-1230. https://doi.org/10.1002/acr.24015
Scoping review: should physiotherapists recommend swimming to patients with low back pain and is further research indicated
Oakes, H., Mills, H., DeVivo, M. and Stephensen, D. 2020. Scoping review: should physiotherapists recommend swimming to patients with low back pain and is further research indicated. Physiotherapy. 107 (S1), p. e190. https://doi.org/10.1016/j.physio.2020.03.278
Telephone or video? A review of telemedicine consultations during the COVID-19 pandemic in a spinal MSK service
Oakes, H., Hussey, J, Stephensen, D. and Oakes, A 2020. Telephone or video? A review of telemedicine consultations during the COVID-19 pandemic in a spinal MSK service.
Treatment regimens and outcomes in severe and moderate haemophilia A in the UK: The THUNDER study
Scott M.J., Xiang, H., Hart, D.P., Palmer, B., Collins, P.W., Stephensen, D., Sima, C.S. and Hay, C.R.M. 2018. Treatment regimens and outcomes in severe and moderate haemophilia A in the UK: The THUNDER study. Haemophilia. https://doi.org/10.1111/hae.13616
Postural stability is affected in older males with Haemophilia—a matched control study
Digby-Bowl, C., Brown, M. and Stephensen, D. 2018. Postural stability is affected in older males with Haemophilia—a matched control study. Journal of Functional Morphology and Kinesiology. 3 (1), pp. 10-20. https://doi.org/10.3390/jfmk3010010
Screening for falls risk in the older person with haemophilia - a pilot study
Stephensen, D., Brown, M., Digby-Bowl, C., Swaine, I. and Evans, G. 2016. Screening for falls risk in the older person with haemophilia - a pilot study. Haemophilia. 22 (S4), pp. 105-105. https://doi.org/10.1111/hae.12980
Exploring the significance of falls in the everyday lives of the older person with haemophilia
Stephensen, D., Brown, M., Digby-Bowl, C., Swaine, I. and Evans, G. 2016. Exploring the significance of falls in the everyday lives of the older person with haemophilia.
Screening for falls risk in the older person with haemophilia – a pilot study
Stephensen, D., Brown, M., Digby-Bowl, C., Swaine, I. and Evans, G. 2016. Screening for falls risk in the older person with haemophilia – a pilot study. Blackwell.
Exploring the significance of falls in the everyday lives of the older person with haemophilia
Stephensen, D., Brown, M., Digby-Bowl, C., Swaine, I. and Evans, G. 2016. Exploring the significance of falls in the everyday lives of the older person with haemophilia. Haemophilia. 22 (S2), pp. 45-46. https://doi.org/10.1111/hae.1_12882
Clinical outcome measures for monitoring physical function in pediatric obesity: An integrative review
Mahaffey, R., Morrison, S.C., Stephensen, D. and Drechsler, W.I. 2016. Clinical outcome measures for monitoring physical function in pediatric obesity: An integrative review. Obesity. 24 (5), pp. 993-1017. https://doi.org/10.1002/oby.21468
Measuring physical function capacity in persons with haemophilia: A systematic review of performance-based methods
Holdsworth, C,, Bladen, M., Harbridge, H., Drechsler, W., Mahaffey, R., Perez-Alenda, S., Sayers, F., Strike, K., Timmer, M. and Stephensen, D. 2005. Measuring physical function capacity in persons with haemophilia: A systematic review of performance-based methods. Haemophilia. https://doi.org/10.1111/hae.70081