The Canadian Physiotherapists in Hemophilia Care (CPHC) sought to learn about attitudes and behaviours of young male adults with mild haemophilia towards their condition and care. Semi-structured in-person or telephone interviews were conducted with 18 young men from and across Canada. This report summarizes the participants' attitudes towards their haemophilia, previous injuries, perceived barriers to seeking treatment, as well as their decision-making process when self-assessing injury. The interviews demonstrated that communication between the young adults and the health care team was not optimal, with common reference to the ineffectiveness of lecture style education. Gaps in knowledge also emerged regarding bleed identification and management.

Summary Background Full‐dose prophylaxis is very effective at minimizing joint damage but is costly. Tailored prophylaxis has been proposed as a way of reducing costs while still protecting joints. Objective To report detailed findings in index joints of 56 subjects with severe hemophilia A entered into the Canadian Hemophilia Prophylaxis Study, and treated with tailored prophylaxis, after 13 years. Methods Boys with severe hemophilia A (< 2% factor) and normal joints were enrolled between the ages of 1 and 2.5 years. Initial treatment consisted of once‐weekly factor infusions, with the frequency escalating in a stepwise fashion when breakthrough bleeding occurred. During the first 5 years, subjects were examined every 3 months using the modified Colorado Physical Evaluation (PE) scale; subsequently, every 6 months. The Childhood Health Assessment Questionnaire (CHAQ) was administered at each visit. Results Median age at study entry was 19 months (range 12–30 months); median follow‐up was 92 months (range 2–156). The median PE score was 2, 3 and 3 at ages 3, 6 and 10 years. Persistent findings were related to swelling, muscle atrophy and loss of range of motion. The median score for each of these items (for the six index joints) was 0 at ages 3, 6 and 10 years. The median overall CHAQ score was 0 at ages 3, 6 and 10 years, indicating excellent function. Conclusions Canadian boys treated with tailored primary prophylaxis exhibit minimal joint change on physical examination and minimal functional disability.

Introduction Several bleeding disorders are characterized by haemorrhage into joints and muscles. These conditions are best managed by interdisciplinary teams that include physiotherapists. In 1997, physiotherapists from haemophilia treatment centres in Canada formed the Canadian Physiotherapists in Hemophilia Care (CPHC). The guiding principles of the CPHC reflect a commitment to evidence‐based practice, education and collaboration. Aim To describe the process used by CPHC to develop evidence‐based clinical practice guidelines to inform best practice, guide decision‐making and help educate physiotherapists, students, and other team members about the physiotherapy management of people with bleeding disorders. Methods We followed the procedures outlined in the American Physical Therapy Association's Clinical Practice Guideline Process Manual (2018). Namely, we selected a working group, determined the scope of the guidelines, performed a literature search, selected and appraised the evidence, drafted the guidelines as practice statements, assigned a strength of recommendation to each practice statement and disseminated the guidelines. Results Thirty‐nine practice statements were developed in nine practice areas. Strength of evidence was strong for two statements, moderate for one and weak for three. The remainder were graded as theoretical or best practice. Conclusion To our knowledge, these are the first evidence‐based clinical practice guidelines that cover all aspects of physiotherapy management of people with bleeding disorders. Some areas, such as exercise and manual therapy, have been well investigated. However, the overall low levels of evidence and low strengths of recommendations highlight the need for more rigorous research with this population.