Developing a new scoring scheme for the Hemophilia Joint Health Score 2.1

BACKGROUND: The Hemophilia Joint Health Score (HJHS) is a validated outcome tool developed for the assessment of joint health in people with hemophilia. The ordinal joint score assesses 9 items in 6 index joints. It is recognized as an optimal measurement of arthropathy in children and young adults. The aim of this study was to develop an updated scoring system for the HJHS that may overcome the limitations of its current ordinal scoring structure. METHODS: A survey was developed using 1000Minds decision‐making software. Respondents were provided with discrete choice tasks of ranking alternatives to determine the preference weight, or relative importance, placed on different criteria for each HJHS item. The survey was distributed to an anonymous sample of health care professionals with extensive experience in the physical examination of joints in people with hemophilia. RESULTS: A total of 64 musculoskeletal health care professionals participated; with a 64% survey completion rate. The HJHS item weights provide a sum to 1.0; the highest‐ranked item was extension loss (0.139) followed by swelling (0.121), whereas the lowest was duration of swelling (0.057) followed by muscle atrophy (0.08). Compared to the original, the relative efficiency of the new score was 5.4. CONCLUSIONS: Observed differences in preference weights for HJHS items highlight the potential under‐ or overestimation of true joint health using the current ordinal scoring system. An updated scoring system using weighted items may improve the precision of HJHS assessment, leading to improved clinical management of joint health, while providing a robust research tool.