Musculoskeletal Health Expert Working Group

History

The Musculoskeletal Health (formerly Physiotherapy) Expert Working Group held their first meeting as part of an IPSG conference in November, 2002. At this meeting, the group, composed of experienced physiotherapists & physicians was tasked with exploring harmonization of existing joint health scores (WFH, Colorado, and Stockholm) to develop a single, more sensitive musculoskeletal scoring tool for use in Hemophilia. Subsequently, a new consensus measure was developed entitled the Hemophilia Joint Health Score (HJHS), with a focus on assessing joint impairment in children ages 4 to 18 years. The HJHS has now been extensively studied, and validated for use in both the pediatric and adult hemophilia populations (Hilliard P et al. 2006; Feldman BF et al. 2011; St-Louis, J et al. 2022) .

Currently, the HJHS 2.1 Toolkit (including the Instruction Manual & Instructional Videos) is available in 11 languages on the HJHS website: www.hjhs.ca. Further information regarding access to the toolkit, background & psychometric testing of the HJHS including related references can also be found on the website.

Building on this strong foundation, the IPSG MSKH Expert Working Group continues to be actively involved in several key projects. Currently, a significant focus is on the development of a clinical screening tool derived from the HJHS, aiming to provide a more efficient method for early identification of joint issues in individuals with bleeding disorders. Complementing this work is an ongoing effort to understand the effect of new treatments on joint health and gain a deeper understanding of physical literacy within the population of people with bleeding disorders. This research seeks to explore the various components of physical literacy and how they relate to joint health, activity levels, and overall well-being in this specific population.