Stephensen D1,2, de Kleijn P3,4, Dubvik-Matlary RE5, Katzerova M6, McLaughlin P7, Ryan A8, Lobet S9,10
1East Kent Hospitals University NHS Trust, Canterbury, United Kingdom, 2Royal London Hospital, Haemophilia Centre, London, United Kingdom, 3University Medical Center Utrecht, Van Creveldkliniek, Utrecht, Netherlands, 4University Medical Center Utrecht, Department of Rehabilitation, Physical Therapy Science and Sport, Utrecht, Netherlands, 5Oslo University Hospital, Haemophilia Centre, Oslo, Norway, 6University Children’s Hospital, Department of Rehabilitation, Brno, Czech Republic, 7Royal Free Hospital NHS Trust, Katharine Dormandy Haemophilia Centre & Thrombosis Unit, London, United Kingdom, 8European Association for Haemophilia and Allied Disorders, Brussels, Belgium, 9Université Catholique de Louvain, Secteur des Sciences de la Santé, Brussels, Belgium, 10Cliniques Universitaires Saint-Luc, Service de Médecine Physique et Réadaptation, Brussels, Belgium
Background: Haemophilia is a rare disease. Thosoe with the disorder expereince bleeding into muscle and joints leading to progressive arthropathy. European guidelines on the care of the haemophilia recommend that those with the disorder should have ready access to a range of services provided by a multidisciplinary team of specialists including availability of a dedicated physiotherapy service. It remains unclear if these guidelines are being adhered to. A Physiotherapists' committee of the European Association for Haemophilia and Allied Disorders (EAHAD) was established in 2017 with the aim of connecting physiotherapists working in this specialised area and facilitate the exchange of knowledge between them with the end goal of improving the provision and quality of musculoskeletal care to patients with bleeding disorders throughout Europe.
Purpose: To document and quantify the current role and scope of practice of physiotherapists involved in the care of people with haemophilia in Europe.
Methods: A web-based survey conducted by the Physiotherapists' committee of the European Association for Haemophilia and Allied Disorders (EAHAD) was sent to more than 200 physiotherapists registered on the EAHAD database. Questions concerning the characteristics of the respondents, physiotherapy work practices including assessment and treatment activities and level of autonomy were asked.
Results: Eighty physiotherapists from twenty-four European countries responded to the survey. There is substantial diversity of roles and scope of practice of physiotherapists in the care of people with haemophilia across Europe. In particular, there is marked variability in access to physiotherapy treatment and the autonomy of physiotherapists to make independent assessment and treatment decisions.
Conclusion(s): This pan-European survey establishes a context to support physiotherapy role development and professional identify for the management of a rare disease. Further work aims to, facilitate the development of guidelines on the scope of practice, establish a core educational and competency framework for physiotherapists involved in haemophilia care as well as a strategy to improve the musculoskeletal management of people with haemophilia.
Implications: The European survey supports the view that establishing a European network of physiotherapists is needed in rare conditions such as haemophilia to define the scope of practice and role for physiotherapists as well as developing training and competency frameworks together with mentorship programmes to enhance provision and quality of care and improve patient outcomes.
Keywords: Haemophilia, Scope of practice, Autonomy
Funding acknowledgements: European Association for Haemophilia and Allied Disorders
Purpose: To document and quantify the current role and scope of practice of physiotherapists involved in the care of people with haemophilia in Europe.
Methods: A web-based survey conducted by the Physiotherapists' committee of the European Association for Haemophilia and Allied Disorders (EAHAD) was sent to more than 200 physiotherapists registered on the EAHAD database. Questions concerning the characteristics of the respondents, physiotherapy work practices including assessment and treatment activities and level of autonomy were asked.
Results: Eighty physiotherapists from twenty-four European countries responded to the survey. There is substantial diversity of roles and scope of practice of physiotherapists in the care of people with haemophilia across Europe. In particular, there is marked variability in access to physiotherapy treatment and the autonomy of physiotherapists to make independent assessment and treatment decisions.
Conclusion(s): This pan-European survey establishes a context to support physiotherapy role development and professional identify for the management of a rare disease. Further work aims to, facilitate the development of guidelines on the scope of practice, establish a core educational and competency framework for physiotherapists involved in haemophilia care as well as a strategy to improve the musculoskeletal management of people with haemophilia.
Implications: The European survey supports the view that establishing a European network of physiotherapists is needed in rare conditions such as haemophilia to define the scope of practice and role for physiotherapists as well as developing training and competency frameworks together with mentorship programmes to enhance provision and quality of care and improve patient outcomes.
Keywords: Haemophilia, Scope of practice, Autonomy
Funding acknowledgements: European Association for Haemophilia and Allied Disorders
Topic: Professional practice: other; Professional issues; Globalisation: health systems, policies & strategies
Ethics approval required: No
Institution: Not applicable
Ethics committee: Not applicable
Reason not required: Participants were recruited from a professional database to which they had consented to be listed.
All authors, affiliations and abstracts have been published as submitted.
