Ribeiro Tiago, Abad Audrey, Feldman Brian M
Schulich School of Medicine & Dentistry Western University London Ontario Canada.
Child Health Evaluative Sciences Program, Research Insititute The Hospital for Sick Children Toronto Ontario Canada.
Res Pract Thromb Haemost. 2019 May 20;3(3):405-411. doi: 10.1002/rth2.12212. eCollection 2019 Jul.
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.
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.
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.
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.
血友病关节健康评分（HJHS）是一种经过验证的结局工具，用于评估血友病患者的关节健康状况。序数关节评分评估6个指标关节中的9个项目。它被认为是儿童和年轻成人关节病的最佳测量方法。本研究的目的是开发一种更新的HJHS评分系统，以克服其当前序数评分结构的局限性。
使用1000Minds决策软件开展一项调查。向受访者提供对备选方案进行排序的离散选择任务，以确定对每个HJHS项目不同标准的偏好权重或相对重要性。该调查分发给在血友病患者关节体格检查方面具有丰富经验的医疗保健专业人员的匿名样本。
共有64名肌肉骨骼保健专业人员参与；调查完成率为64%。HJHS项目权重总和为1.0；排名最高的项目是伸展受限（0.139），其次是肿胀（0.121），而最低的是肿胀持续时间（0.057），其次是肌肉萎缩（0.08）。与原始评分相比，新评分的相对效率为5.4。
HJHS项目偏好权重的观察差异突出了使用当前序数评分系统可能低估或高估真实关节健康状况的可能性。使用加权项目的更新评分系统可能会提高HJHS评估的精度，从而改善关节健康的临床管理，同时提供一个强大的研究工具。
