Division of Rheumatology, Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Canada.
Division of Rheumatology, BC Children's Hospital, University of British Columbia, Vancouver, Canada.
Pediatr Rheumatol Online J. 2021 Jun 5;19(1):83. doi: 10.1186/s12969-021-00579-1.
Current evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA.
A phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA.
In Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach's α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness.
The RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.
目前的证据表明，许多患有幼年特发性关节炎（JIA）的青少年未能成功过渡到成人护理，这可能导致不良的健康结果。尽管越来越多的临床项目旨在支持医疗过渡，但缺乏衡量青少年 JIA 过渡相关知识和技能发展的心理测量学上健全的工具。本研究的目的是开发和验证 RACER（风湿病成人护理准备），这是一种自我管理工具，旨在衡量青少年 JIA 关键过渡相关技能的准备阶段。
采用分阶段方法开发和评估 RACER 的有效性和可靠性。第 1 阶段 A 是一次共识会议，有 19 位主要利益相关者参加，为工具领域和项目提供信息。第 1 阶段 B 使用 30 名 JIA 青少年和 15 名临床和研究专家的样本确定了初始内容有效性。最后，第 2 阶段是一项前瞻性队列研究，采用重复测量方法评估 RACER 在 JIA 青少年样本中的内部一致性、重测信度、结构有效性和反应性。
在第 1 阶段 A 中，初始项目生成共产生了来自共识会议的六个领域的 242 个项目，随后减少到 32 个项目。第 1 阶段 B 确定了青少年 JIA 中该工具的内容有效性。在第 2 阶段研究中，使用 96 名青少年的样本，RACER 仪器在其六个子量表中的五个子量表中表现出良好的内部一致性（Cronbach's α>0.7），并且在第一次和第二次测试之间具有很强的重测信度（ICC=0.83）。它还通过与自我管理（SMSAG，rho=0.73）和过渡（TRANSITION-Q，rho=0.76）的高度相关表现出强大的收敛有效性。RACER 与不相关的测量值（判别有效性；PedsQL，rho=0.14）不相关。正如预期的那样，RACER 得分随时间显著增加，支持了测量的反应性。
RACER 是一种可靠且有效的工具，可用于评估青少年 JIA 的过渡准备情况。
