Measuring What Matters for Children: A Systematic Review of Frequently Used Pediatric Generic PRO Instruments.

Measuring What Matters for Children: A Systematic Review of Frequently Used Pediatric Generic PRO Instruments.
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DOI:
10.1007/s43441-021-00311-x
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发表时间:
2021-09
影响因子:
1.5
通讯作者:
Patalano F
Patalano F
中科院分区:
医学4区
文献类型:
--
作者:
Arsiwala T;Afroz N;Kordy K;Naujoks C;Patalano F

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根据 ISPOR 工作组为儿科人群推荐的良好研究实践,对最常用的自我报告、通用患者报告结果测量 (PROM) 的质量进行评估,这些测量测量儿童健康相关的生活质量 (HRQoL)。在 OvidSP 数据库上进行文献检索,以确定已发表的临床研究中使用的通用儿科 PROM。根据 ISPOR 工作组的良好研究实践,对十多项临床研究中使用的 PROM 的质量进行了描述性评估。评估了六个 PROM,即儿科生活质量量表 4.0 (PedsQL)、儿童健康问卷 (CHQ)、KIDSCREEN、KINDL、DISABKIDS 和儿童健康与疾病概况 (CHIP)。除 KIDSCREEN 外,所有 PROM 都有针对不同年龄段的版本。身体、社会、情感健康和学校活动等领域在所有工具中都很常见,而家庭活动、父母关系、独立和自尊等领域则全部不存在。 PROM 的开发过程中征求了儿童的意见。所有乐器均采用李克特量表,并在适合 8 岁以下儿童的乐器中辅以面孔(笑脸)。 KIDSCREEN 和 DISABKIDS 是在欧洲合作项目中开发的,考虑到开发过程中的跨文化影响。仪器的比较突出了不同儿科年龄组的版本的差异。没有一个 PROM 能够满足 ISPOR 工作组推荐的所有良好研究实践。需要进一步研究来确定哪些适合年龄的领域对于年龄较大的儿童和青少年来说很重要。在线版本包含可在 10.1007/s43441-021-00311-x 获取的补充材料。
To provide an assessment of the quality of the most frequently used self-reported, generic patient-reported outcome measures (PROMs) that measure health-related quality of life (HRQoL) in children against the good research practices recommended by ISPOR task force for the pediatric population. Literature search was conducted on OvidSP database to identify the generic pediatric PROMs used in published clinical studies. The quality of PROMs used in more than ten clinical studies were descriptively evaluated against the ISPOR task force’s good research practices. Six PROMs were evaluated, namely Pediatric Quality-of-Life inventory 4.0 (PedsQL), Child Health Questionnaire (CHQ), KIDSCREEN, KINDL, DISABKIDS and Child Health and Illness Profile (CHIP). All PROMs, except KIDSCREEN, had versions for different age ranges. Domains of physical, social, emotional health and school activities were common across all the instruments, while domains of family activities, parent relations, independence, and self-esteem were not present in all. Children’s input was sought during the development process of PROMs. Likert scales were used in all the instruments, supplemented with faces (smileys) in instruments for children under 8 years. KIDSCREEN and DISABKIDS were developed in a European collaboration project considering the cross-cultural impact during development. The comparison of the instruments highlights differences in the versions for different pediatric age groups. None of the PROMs fulfill all the good research practices recommended by the ISPOR task force. Further research is needed to define which age-appropriate domains are important for older children and adolescents. The online version contains supplementary material available at 10.1007/s43441-021-00311-x.
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