P. Stoustrup, DDS, PhD, Associate Professor, Section of Orthodontics, Department of Dentistry and Oral Health, Aarhus University, Aarhus, Denmark;
H. Rahimi, MD, Department of Paediatrics and Adolescent Medicine, Herlev and Gentofte Hospital, Copenhagen University Hospital, Herlev, Denmark.
J Rheumatol. 2023 May;50(5):676-683. doi: 10.3899/jrheum.220667. Epub 2022 Dec 1.
To develop, validate, and test the performance of patient-reported outcomes (PROs) in a short patient questionnaire (< 5 minutes in length) in order to assess the multidimensional aspects of orofacial symptoms related to juvenile idiopathic arthritis (JIA) among patients aged ≥ 10 years.
The study was conducted by an interdisciplinary task force from the Temporomandibular Joint Juvenile Arthritis Working Group. The project consisted of a multiphased approach including the following: (1) conceptual phase with online international survey of 167 healthcare workers, (2) item generation and drafting of preliminary questionnaire(s) (ie, face validity), (3) cognitive script interview and probing (ie, content validity; 16 patients with JIA), (4) assessment of construct validity (ie, convergence and divergence; 53 patients with JIA), (5) test of reliability, and (6) test of clinical performance and psychometric characteristics (95 patients with JIA).
In total, 7 PROs were included in the final patient questionnaire: (1) pain frequency, (2) pain intensity, (3) pain location, (4) jaw function, (5) specific questions related to symptoms and dysfunction, (6) changes in face and jaw pain since last visit, and (7) changes in jaw function since last visit. In total, 80% of the patients were able to complete the questionnaire in less than 5 minutes.
We have developed and validated a short patient questionnaire to assess the multidimensional aspects of JIA-related orofacial symptoms. The PROs included in our questionnaire show acceptable validity and reliability. The questionnaire is applicable to routine monitoring of subjects with JIA, as well as future research studies.
开发、验证并测试患者报告结局（PROs）在简短患者问卷（<5 分钟）中的表现，以评估≥10 岁的青少年特发性关节炎（JIA）患者与口面症状相关的多维方面。
这项研究由颞下颌关节青少年关节炎工作组的跨学科工作组进行。该项目采用多阶段方法，包括以下内容：（1）概念阶段，对 167 名医疗保健工作者进行在线国际调查；（2）项目生成和初步问卷草案（即表面有效性）；（3）认知脚本访谈和探查（即内容有效性；16 名 JIA 患者）；（4）评估结构有效性（即收敛和发散；53 名 JIA 患者）；（5）可靠性测试；（6）临床性能和心理测量特征测试（95 名 JIA 患者）。
总共 7 项 PROs 被纳入最终患者问卷：（1）疼痛频率；（2）疼痛强度；（3）疼痛位置；（4）颌功能；（5）与症状和功能障碍相关的具体问题；（6）自上次就诊以来面部和颌骨疼痛的变化；（7）自上次就诊以来颌功能的变化。总共，80%的患者能够在 5 分钟内完成问卷。
我们已经开发并验证了一种简短的患者问卷，以评估 JIA 相关口面症状的多维方面。我们问卷中的 PROs 表现出可接受的有效性和可靠性。该问卷适用于 JIA 患者的常规监测以及未来的研究。
