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Haemophilia is a rare, congenital coagulation disorder that causes spontaneous bleeding, particularly in joints and muscles. This leads to pain and limited range of motion. Physiotherapy plays an important role in preventing and treating physical complaints, with the aim of maintaining daily activities and social participation. The thesis focuses on the role of primary care physiotherapy for people with haemophilia and other allied bleeding disorders, and on improving their physical functioning.

Part 1 examines the role of primary care physiotherapy. A questionnaire completed by patients and physiotherapists shows that the collaboration between primary care and haemophilia treatment centres (HTC) is generally perceived as positive. However, there is a knowledge gap among physiotherapists about coagulation disorders. Those involved indicated that formal networks are difficult to establish for rare disorders, but that standardised guidelines and better communication offer feasible improvements. A clinical practice guideline has therefore been developed with recommendations for the treatment of, among other things, muscle and joint bleeding, synovitis and haemophilia arthropathy. In practice, there is considerable variation in treatments, and the guideline is not always followed.

Part 2 focuses on physical functioning and social participation. A study of 104 people with severe haemophilia showed that one in three people experienced a significant decline over a period of 3.5 years. Predictive factors for decline include a high BMI and joint limitations. Special attention was paid to behavioural change to promote physical activity. Finally, researchers within this thesis investigated which changes on the Haemophilia Activity List (HAL) are perceived as meaningful, which contributes to better patient monitoring.

The thesis emphasises the importance of a practical guideline for primary care physiotherapists to improve care for people with coagulation disorders. In addition, evaluation of functioning using the HAL is important for early identification of deterioration.