Coordinating physiotherapy care for persons with haemophilia

Area of Science:

• Medical Rehabilitation
• Rare Diseases
• Healthcare Coordination

Background:

• Physiotherapy is crucial for persons with haemophilia (PWH) to manage bleeding and arthropathy.
• Geographical barriers limit PWH access to specialized Haemophilia Comprehensive Care Centres (HCCC).
• Primary care physiotherapists may lack experience with haemophilia management.

Purpose of the Study:

• To investigate stakeholder experiences with primary care physiotherapy for PWH.
• To generate recommendations for optimizing physiotherapy care coordination in haemophilia.

Main Methods:

• A RAND methodology, including a Delphi procedure with questionnaires and a consensus meeting.
• Involved stakeholders: PWH, HCCC physiotherapists, and primary care physiotherapists.
• Purposive sampling ensured diverse participant representation for the consensus meeting.

Main Results:

• 96 primary care physiotherapists, 54 PWH, and 8 HCCC physiotherapists completed questionnaires.
• A consensus meeting refined 33 initial recommendations into 20.
• 13 prioritized recommendations emerged, highlighting key areas for improvement.

Conclusions:

• Formal network commitment is challenging for rare diseases like haemophilia.
• Key recommendations include developing practice guidelines, ensuring accessible information, fostering open communication, and establishing clear referral criteria.
• Optimizing care coordination is essential for PWH receiving physiotherapy in primary care settings.