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一种新的评估青少年特发性关节炎的生物心理社会和临床问卷:JAB-Q。

A new biopsychosocial and clinical questionnaire to assess juvenile idiopathic arthritis: JAB-Q.

机构信息

Department of Physical Therapy and Rehabilitation, Hacettepe University Faculty of Health Sciences, Ankara, Turkey.

Department of Pediatric Rheumatology, Hacettepe University Faculty of Medicine, Ankara, Turkey.

出版信息

Rheumatol Int. 2018 Aug;38(8):1557-1564. doi: 10.1007/s00296-018-4075-4. Epub 2018 Jun 5.

Abstract

OBJECTIVE

To create a new multidimensional questionnaire for the assessment of juvenile idiopathic arthritis (JIA) patients in standard clinical practice and study the validity and reliability of this questionnaire.

METHODS

The Juvenile Arthritis Biopsychosocial and Clinical Questionnaire (JAB-Q) was created using the Delphi technique and consensus conference following an initial literature search. The questionnaire has three parts including a clinician form, child form and parent form. This is a patient/parent-centered outcome tool, which helps us to evaluate the biopsychosocial aspects of the patient, including disease activity, posture, functional and psychosocial status, fatigue, and performance in school. From January 2015 to January 2018, 6-18 years old children with JIA were enrolled in the study. The previously validated questionnaires were also applied to each participant to validate the JAB-Q: Juvenile Idiopathic Disease Arthritis Score (JADAS) and Childhood Health Assessment Questionnaire (CHAQ), and the Family Impact Questionnaire (FIS). The same questionnaire was re-administered after one week to assess the test-retest reliability in randomly selected 50 children and their parents.

RESULTS

A group of experts were invited to the Delphi survey. After the Delphi tours, the final form of the questionnaire containing three parts as clinician form, child form and parent form was created. This tool was applied to 310 JIA patients and their parents. The children and parents easily handled the JAB-Q and filled the forms in around 10-15 min. The validity of the clinician, child and parents' forms were assessed by the JADAS, CHAQ, and FIS, respectively. The validity of these three scales were determined as moderate. In addition, the test-retest reliability of the clinician, child and parents' forms were considerably high.

CONCLUSION

JAB-Q is a valid and reliable multidimensional biopsychosocial outcome tool that can be used routinely in clinical practice of pediatric rheumatology. The main advantage of this tool is incorporation of patients' and parents' perspectives separately while providing a practical and standard setting for the clinician's evaluation. However, further validation of this tool in an independent cohort is needed to improve its applicability.

摘要

目的

创建一种新的多维问卷,用于评估标准临床实践中的青少年特发性关节炎(JIA)患者,并研究该问卷的有效性和可靠性。

方法

使用 Delphi 技术和共识会议,在初步文献检索后创建了青少年关节炎生物心理社会和临床问卷(JAB-Q)。问卷有三个部分,包括临床医生表单、儿童表单和家长表单。这是一种以患者/家长为中心的结果工具,有助于我们评估患者的生物心理社会方面,包括疾病活动度、姿势、功能和心理社会状态、疲劳以及在学校的表现。从 2015 年 1 月至 2018 年 1 月,招募了 6-18 岁患有 JIA 的儿童参加研究。每个参与者还应用了先前经过验证的问卷来验证 JAB-Q:青少年特发性关节炎疾病评分(JADAS)和儿童健康评估问卷(CHAQ)和家庭影响问卷(FIS)。在随机选择的 50 名儿童及其父母中,一周后重新进行相同的问卷以评估测试-重测信度。

结果

邀请了一组专家参加 Delphi 调查。经过 Delphi 巡回赛,创建了最终包含临床医生表单、儿童表单和家长表单三个部分的问卷形式。该工具应用于 310 名 JIA 患者及其父母。儿童和父母轻松处理 JAB-Q,并在 10-15 分钟左右填写表格。临床医生、儿童和父母表单的有效性分别通过 JADAS、CHAQ 和 FIS 进行评估。这三个量表的有效性被确定为中度。此外,临床医生、儿童和父母表单的测试-重测信度相当高。

结论

JAB-Q 是一种有效的、可靠的多维生物心理社会结局工具,可常规用于儿科风湿病学的临床实践。该工具的主要优势在于分别纳入患者和家长的观点,同时为临床医生的评估提供实用且标准的设置。然而,需要在独立队列中进一步验证该工具以提高其适用性。

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