Physiotherapy as Part of Comprehensive Care for People with Hemophilia – Recommendations vs. Reality

Role and Capabilities of a Physiotherapist in Hemophilia Care

The World Federation of Hemophilia (WFH) recommends comprehensive care for people with hemophilia that includes both acute and preventive approaches, which have proven benefits in terms of reducing morbidity and mortality, as well as improving quality of life and overall health. Physiotherapy, which must be lifelong, is an integral part of care. It involves assessing the condition, educating patients, and treating acute bleeding and chronic musculoskeletal complications using a variety of physiotherapeutic methods. A crucial role of the physiotherapist is as a mediator between the doctor, the patient, the family, and the community.

Therapeutic options for hemophilia have significantly expanded over the last 20–30 years to include safe supplementation of coagulation factors and even non-factor treatment. The population of men with hemophilia is growing and aging due to significant life expectancy increases, resulting in more individuals with substantial physical impairments due to hemophilic arthropathy. Their main identified needs include addressing acute and chronic pain and distinguishing symptoms of acute and long-term joint damage. Here, the physiotherapist's role within a broader multidisciplinary team can support the overall health and quality of life of patients with hemophilia.

The role of the physiotherapist is not limited to conducting prescribed exercises. They can offer condition assessments, advice, rehabilitation, help optimize physical activity levels, and maintain health and quality of life. Physiotherapists are trained in communicating with individuals concerned about their physical health. In a multidisciplinary team, they are key players who can help people with hemophilia understand, prevent, and address acute and chronic complications of the condition.

Confronting the Ideal with Reality

However, it appears that the current state is far from this ideal model. The quality of physiotherapy services provided varies significantly across centers. Nearly 30% of hemophilia centers in Europe offer sporadic physiotherapy. The quality of these services in the remaining 70% of centers is unknown. In the United Kingdom, 60% of comprehensive hemophilia care centers offer insufficient physiotherapy care. The Canadian Hemophilia Society estimated that a mere 2–3% of investments in modern hemophilia treatment would cover the financial requirements for staffing physiotherapy services for people with hemophilia nationwide. Similarly, in the Netherlands, it was calculated that providing optimal physiotherapy care for people with hemophilia would cost only 1% of the country's hemophilia treatment expense.

A Call for Improvement

Experts from the United Kingdom, Ireland, Norway, Sweden, Belgium, France, and the Czech Republic published a call for widely accessible quality physiotherapy for people with hemophilia in the journal Haemophilia in August 2020.

Development opportunities for physiotherapy services include the following steps:

• Recognizing the essential role of the physiotherapist in a multidisciplinary team.
• Support and guidance from a hematologist/pediatrician.
• Enhancing the attractiveness of the physiotherapist position: clear job descriptions, responsibilities, and professional development opportunities.
• Services tailored to the needs of people with hemophilia.
• Care based on the bio-psycho-social needs of people with hemophilia.
• Training and practice to gain the necessary knowledge and skills for different age groups of people with hemophilia.
• Full funding for physiotherapy–based on identified necessary extent.
• Ongoing research.
• Collaboration at national and international levels.

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Source: McLaughlin P., Aspdahl M., Matlary R. E. D. et al. Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice. Haemophilia 2020 Oct 4, doi: 10.1111/hae.14150 [Epub ahead of print].