A national assessment of standards of care for inherited bleeding disorders in Canada.

AIM: The Canadian Integrated and Comprehensive Care Standards for Inherited Bleeding Disorders were adopted in June 2020. In early 2023, a self-assessment of each of the 26 Canadian inherited bleeding disorder treatment centre's (IBDTCs) capacity to meet the Standards was conducted. The goal was to validate the standards by assessing appropriateness and adherence. As a result, centres can compare their own practices and capacity against those of all centres, identify barriers to adherence, identify opportunities for remedial actions and use the results locally as evidence for needed resources. METHODS: Healthcare providers (HCPs) in the 26 IBDTCs were provided with a checklist to assess adherence to each of the 66 standards of care. Centre participation was voluntary but strongly encouraged by the healthcare provider and patient associations. RESULTS: All 26 centres completed the self-assessments. Collectively, centres reported meeting 88.8% of the standards. Adherence to each standard ranged from 40% to 100%. Forty-one (41) of the standards were adhered to by 90% or more of the centres, 12 by 80%-89% of the centres and 13 by fewer than 80% of the centres. A report consolidating all the assessments was sent to the 26 centres. CONCLUSION: None of the comments received in the self-assessment reports indicated that a given standard was irrelevant, unrealistic or unnecessary. These data are strong indicators that the standards, as written, are appropriate. The self-assessments, however, reveal alarming deficiencies in staffing levels, notably in physiotherapy, psychosocial support and data entry and data management. These constitute a barrier to comprehensive care for many centres. The findings echo similar conclusions from a previous assessment conducted in 2015.

Developing clinical practice guidelines for physiotherapists working with people with inherited bleeding disorders.

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.