综合性系统回顾矮小症儿科患者健康相关生活质量评估方法。

A comprehensive systematic review of health-related quality of life measures in short stature paediatric patients.

机构信息

Department of Social Work, Hamburg University of Applied Sciences, Hamburg, Germany.

Department of Medical Psychology, University Medical Center, Hamburg-Eppendorf, Hamburg, Germany.

出版信息

Endocrine. 2024 Nov;86(2):478-504. doi: 10.1007/s12020-024-03938-6. Epub 2024 Jul 17.

Abstract

This systematic review investigates Patient-reported Outcome Measures (PROMs) and Observed Reported Outcome Measures (ObsROMs) pertinent to assessing Health-Related Quality of Life (HRQoL) in short-stature paediatric patients, focusing on Achondroplasia (ACH), Growth Hormone Deficiency (GHD), Isolated Growth Hormone Deficiency (IGHD), and Small-for-Gestational-Age (SGA) diagnoses. Utilising rigorous selection criteria, 53 studies published from 1998 to 2023 were analysed, revealing a predominance of European-based research. Notably, the review elucidated the utilisation of disease-specific and generic HRQoL measures, showcasing the multifaceted nature of short-stature conditions and their impact across physical, emotional, and social domains. The Quality of Life in Short Stature Youth (QoLISSY), Paediatric Quality of Life Inventory (PedsQL), and KIDSCREEN emerged as frequently employed instruments, offering nuanced insights into HRQoL perceptions across diverse age demographics. Additionally, the review highlighted the adaptation of adult HRQoL measures for adolescent populations, signalling a need for age-appropriate assessment tools. Furthermore, integrating PROMs and ObsROMs in HRQoL assessment underscored a comprehensive approach, considering both subjective patient perspectives and observed outcomes. Future research directions encompass comprehensive search strategies, longitudinal studies with diverse populations, and the development of age-appropriate HRQoL assessment tools. In conclusion, this review emphasises the importance of comprehensive HRQoL assessment to address the diverse needs of short-stature paediatric patients effectively.

摘要

本系统评价调查了与评估矮小儿童健康相关生活质量(HRQoL)相关的患者报告结局测量(PROM)和观察报告结局测量(ObsROM),重点关注软骨发育不全症(ACH)、生长激素缺乏症(GHD)、孤立性生长激素缺乏症(IGHD)和小于胎龄儿(SGA)的诊断。本研究采用严格的选择标准,分析了 1998 年至 2023 年发表的 53 项研究,结果显示欧洲的研究居多。值得注意的是,该评价阐述了疾病特异性和通用 HRQoL 测量的应用,展示了矮小症的多面性及其对身体、情感和社会领域的影响。生活质量在矮小青少年(QoLISSY)、儿科生活质量量表(PedsQL)和 KIDSCREEN 等工具经常被使用,为不同年龄人群的 HRQoL 感知提供了细致的见解。此外,该评价还强调了成人 HRQoL 测量工具在青少年人群中的应用,表明需要适合年龄的评估工具。此外,在 HRQoL 评估中整合 PROM 和 ObsROM 强调了一种全面的方法,同时考虑了患者的主观感受和观察到的结果。未来的研究方向包括全面的搜索策略、对不同人群进行的纵向研究以及适合年龄的 HRQoL 评估工具的开发。总之,本评价强调了全面 HRQoL 评估的重要性,以有效满足矮小儿童患者的多样化需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6284/11489235/87832ec2adda/12020_2024_3938_Fig1_HTML.jpg

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