A clinical practice guideline for primary care physiotherapy in patients with haemophilia

Johan Blokzijl; Martijn F Pisters; Magnus Aspdahl; Wypke de Boer; Ruth Elise Dybvik Matlary; Danielle Douma-van Riet; Piet de Kleijn; Sébastien Lobet; Paula Loughnane; Paul McLaughlin; Melanie Bladen; Sheila Roche; David Stephensen; Leo van Vlimmeren; Lize F D van Vulpen; Merel A Timmer; EAHAD physiotherapy committee

doi:10.1111/hae.15065

A clinical practice guideline for primary care physiotherapy in patients with haemophilia

Haemophilia. 2024 Sep;30(5):1115-1129. doi: 10.1111/hae.15065. Epub 2024 Jul 10.

Authors

Johan Blokzijl^{1

2}, Martijn F Pisters^{2

3}, Magnus Aspdahl⁴, Wypke de Boer⁵, Ruth Elise Dybvik Matlary⁶, Danielle Douma-van Riet⁷, Piet de Kleijn¹, Sébastien Lobet^{8

9}, Paula Loughnane¹⁰, Paul McLaughlin^{11

12}, Melanie Bladen^{13

14}, Sheila Roche¹⁵, David Stephensen¹⁶, Leo van Vlimmeren¹⁷, Lize F D van Vulpen¹, Merel A Timmer¹; EAHAD physiotherapy committee

Affiliations

¹ Centre for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht, the Netherlands.
² Physical Therapy Research, Department of Rehabilitation, Physiotherapy Science and Sport, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, the Netherlands.
³ Research Group Empowering Healthy Behaviour, Department of Health Innovations and Technology, Fontys University of Applied Sciences, Eindhoven, the Netherlands.
⁴ Women's Health and Allied Health Professionals Theme, Pediatric occupational therapy and physiotherapy, Karolinska University Hospital, Stockholm, Sweden.
⁵ Department of Rehabilitation, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
⁶ Department of Clinical Service, Section for physiotherapy, Oslo University Hospital Rikshospitalet, Oslo, Norway.
⁷ Centre for Rehabilitation, University Medical Centre Groningen, Groningen, the Netherlands.
⁸ Hemostasis and Thrombosis Unit, Division of Hematology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
⁹ Neuromusculoskeletal Lab (NMSK), Secteur des Sciences de la Santé, Institut de Recherche Expérimentale et Clinique, Université catholique de Louvain (UCLouvain), Ottignies-Louvain-la-Neuve, Belgium.
¹⁰ Children's Health Ireland, Dublin, Ireland.
¹¹ Research Department of Haematology, University College London, London, UK.
¹² Katharine Dormandy Haemophilia and Thrombosis Centre, Royal Free Hospital, London, UK.
¹³ Haemophilia Center, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
¹⁴ Great Ormond St, Institute of Child Health, University College London, London, UK.
¹⁵ National Coagulation Centre, St. James's Hospital, Dublin, Ireland.
¹⁶ Faculty of Medicine, Health and Social Care, Canterbury Christ Church University, Canterbury, UK.
¹⁷ Department of Rehabilitation, Paediatric Physical Therapy, Radboud University Medical Center, Nijmegen, the Netherlands.

PMID: 38987021
DOI: 10.1111/hae.15065

Abstract

Introduction: As a result of centralisation of haemophilia care to a limited number of intramural settings, many persons with haemophilia have to travel long distances to attend their haemophilia specialised treatment centre. However, regular physiotherapy treatment can be provided by primary care physiotherapists in the person's own region. Due to the rarity of the disease most primary care physiotherapists have limited experience with this population. This study aims to provide a clinical practice guideline for primary care physiotherapists working with persons with bleeding disorders.

Method: A list of the most urgent key-questions was derived from a previous study. Literature was summarised using the grading of recommendations assessment, development, and evaluation (GRADE) evidence-to-decision framework. Recommendations were drafted based on four 90 min consensus meetings with expert physiotherapists. Recommendations were finalised after feedback and >80% consensus of all stakeholders (including PWH, physiotherapists, haematologists and the corresponding societies).

Results: A list of 82 recommendations was formulated to support primary care physiotherapists when treating a person with a bleeding disorder. These recommendations could be divided into 13 categories: two including recommendations on organisation of care, six on therapy for adult patients with bleeding disorders and five on therapy adaptations for paediatric care. Therapy recommendations included treatment after a joint- or muscle bleed, haemophilic arthropathy, chronic synovitis, non-haemophilia related conditions and orthopaedic surgery.

Conclusion: An evidence-based practice guideline, based on current evidence from literature and clinical expertise, has been developed for primary care physiotherapists treating a person with haemophilia. To improve care, the recommendations should be implemented in daily practice.

Keywords: clinical practice guideline; haemophilia; physical therapy.

Publication types

Review

MeSH terms

Hemophilia A* / complications
Hemophilia A* / therapy
Humans
Physical Therapy Modalities* / standards
Practice Guidelines as Topic
Primary Health Care* / standards

Grants and funding

Novo Nordisk BV