青少年特发性关节炎健康相关生活质量的非疾病特异性患者报告结局测量指标:当前研究和实践的系统评价。

Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice.

机构信息

Department of Pediatrics, Rheumatology, Immunology, and Metabolic Bone Diseases, University Children's Hospital, Medical University of Bialystok, Waszyngtona Street 17, 15-274, Bialystok, Poland.

出版信息

Rheumatol Int. 2022 Feb;42(2):191-203. doi: 10.1007/s00296-021-05077-x. Epub 2021 Dec 31.

Abstract

Juvenile idiopathic arthritis (JIA), as a chronic condition, is associated with symptoms negatively impacting health-related quality of life (HRQL). Regarding growing interest in the implementation of the patient-reported outcome measures (PROMs), we aimed to review the non-disease specific PROMs addressing HRQL assessment, potentially useful in the clinical care of JIA and daily practice. A systematic literature search was conducted using MEDLINE/PubMed, Google Scholar, Scopus and Embase databases (1990 to 2021), with a focus on the recent 5-years period. Entry keywords included the terms: "children", "adolescents", "JIA", "chronic diseases", "HRQL", "PROMs" and wordings for the specific tools. Several available PROMs intended to measure HRQL, non-specific to JIA, were identified. The presented outcomes differed in psychometric properties, yet all were feasible in assessing HRQL in healthy children and those with chronic diseases. Both EQ-5D-Y and PedsQL have already been tested in JIA, showing relevant reliability, validity, and similar efficiency as disease-specific measurements. For PROMIS® PGH-7 and PGH-7 + 2, such validation and cross-cultural adaptation need to be performed. Considering the future directions in pediatric rheumatology, the large-scale implementation of PROMIS® PGH-7 and PGH-7 + 2 in JIA offers a particularly valuable opportunity. The PROMs reflect the patient perception of the chronic disease and allow to understand child's opinions. The PROMs may provide an important element of the holistic medical care of patients with JIA and a standardized tool for clinical outcomes, monitoring disease severity and response to treatment.

摘要

幼年特发性关节炎(JIA)作为一种慢性疾病,其症状会对健康相关生活质量(HRQL)产生负面影响。鉴于人们对实施患者报告结局测量(PROMs)的兴趣日益浓厚,我们旨在综述非疾病特异性 PROMs,以评估其在 JIA 的临床护理和日常实践中评估 HRQL 的潜在作用。我们使用 MEDLINE/PubMed、Google Scholar、Scopus 和 Embase 数据库(1990 年至 2021 年)进行了系统的文献检索,重点关注最近的 5 年。纳入关键词包括:“儿童”、“青少年”、“JIA”、“慢性病”、“HRQL”、“PROMs”和特定工具的表述。确定了几种旨在测量非 JIA 特异性 HRQL 的可用 PROMs。所呈现的结果在心理测量特性上有所不同,但所有结果都可用于评估健康儿童和慢性病儿童的 HRQL。EQ-5D-Y 和 PedsQL 已经在 JIA 中进行了测试,显示出相关的可靠性、有效性和与疾病特异性测量相似的效率。对于 PROMIS® PGH-7 和 PGH-7 + 2,需要进行验证和跨文化适应性研究。考虑到儿科风湿病学的未来方向,在 JIA 中广泛实施 PROMIS® PGH-7 和 PGH-7 + 2 提供了一个特别有价值的机会。这些 PROMs 反映了患者对慢性病的感知,使我们能够了解孩子的意见。PROMs 可以为 JIA 患者的整体医疗护理提供重要内容,并为临床结局、监测疾病严重程度和治疗反应提供标准化工具。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/09f8/8800908/fe487fa62020/296_2021_5077_Fig1_HTML.jpg

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