Abstract：
OBJECTIVE: To identify patient-reported outcome measures (PROMs) that have been used in children and adolescents with glaucoma and to evaluate their methodologic quality.
CONCLUSIONS: Childhood glaucoma impairs vision and quality of life (QoL) throughout all stages of life. Thus, a PROM needs to cover many different age groups and topics. Various instruments have been used to evaluate patient-reported outcomes (PROs) in patients with childhood glaucoma, however, it is unclear which PROM has the highest methodologic quality and complies best with the needs of patients with childhood glaucoma.
METHODS: A systematic literature review was performed searching MEDLINE (PubMed), the Cochrane Library, Web of Science, and PsycINFO (EBSCO). We included peer-reviewed full-text articles of the past 10 years in English, German, or Spanish language that reported PROMs in children with glaucoma. The study selection and methodologic quality assessment of the identified PROMs was performed by 2 independent reviewers using a 7-point checklist. The content was mapped onto the World Health Organization International Classification of Functioning, Disability and Health. The systematic review was prospectively registered in PROSPERO (ID CRD42022353936).
RESULTS: The search strategy retrieved 3295 matches. A total of 2901 studies were screened, and 11 relevant articles were identified using 10 different instruments. The instruments addressed functional visual ability, vision-related QoL, health-related QoL, and life satisfaction. Six instruments were applicable for the use in children. Seven of the questionnaires received the highest number of positive ratings (5/7). None of the instruments considered the views of patients with childhood glaucoma during their development.
CONCLUSIONS: This systematic review provides a descriptive catalog of vision-specific and generic health PRO instruments that have been used in childhood glaucoma cohorts. An instrument specifically developed for childhood glaucoma is lacking which might result in missing important factors, such as permanent treatment with eye drops, repeated surgeries, and heritability of the disease, when investigating the QoL in children with glaucoma.
BACKGROUND: Proprietary or commercial disclosure may be found in the Footnotes and Disclosures at the end of this article.
CONCLUSIONS: Childhood glaucoma impairs vision and quality of life (QoL) throughout all stages of life. Thus, a PROM needs to cover many different age groups and topics. Various instruments have been used to evaluate patient-reported outcomes (PROs) in patients with childhood glaucoma, however, it is unclear which PROM has the highest methodologic quality and complies best with the needs of patients with childhood glaucoma.
METHODS: A systematic literature review was performed searching MEDLINE (PubMed), the Cochrane Library, Web of Science, and PsycINFO (EBSCO). We included peer-reviewed full-text articles of the past 10 years in English, German, or Spanish language that reported PROMs in children with glaucoma. The study selection and methodologic quality assessment of the identified PROMs was performed by 2 independent reviewers using a 7-point checklist. The content was mapped onto the World Health Organization International Classification of Functioning, Disability and Health. The systematic review was prospectively registered in PROSPERO (ID CRD42022353936).
RESULTS: The search strategy retrieved 3295 matches. A total of 2901 studies were screened, and 11 relevant articles were identified using 10 different instruments. The instruments addressed functional visual ability, vision-related QoL, health-related QoL, and life satisfaction. Six instruments were applicable for the use in children. Seven of the questionnaires received the highest number of positive ratings (5/7). None of the instruments considered the views of patients with childhood glaucoma during their development.
CONCLUSIONS: This systematic review provides a descriptive catalog of vision-specific and generic health PRO instruments that have been used in childhood glaucoma cohorts. An instrument specifically developed for childhood glaucoma is lacking which might result in missing important factors, such as permanent treatment with eye drops, repeated surgeries, and heritability of the disease, when investigating the QoL in children with glaucoma.
BACKGROUND: Proprietary or commercial disclosure may be found in the Footnotes and Disclosures at the end of this article.
摘要：
目的：确定患者报告的结局指标（PROMs），已经用于患有青光眼的儿童和青少年，并评估其方法学质量。
结论：儿童青光眼在生命的所有阶段都会损害视力和生活质量。因此，PROM需要涵盖许多不同的年龄组和主题。各种仪器已被用于评估儿童青光眼患者的患者报告结果，然而,尚不清楚哪种PROM具有最高的方法学质量,并且最符合儿童青光眼患者的需求.
方法：搜索MEDLINE（PubMed），科克伦图书馆,WebofScienceandPsycINFO(EBSCO)。我们用英语收录了同行评审的过去十年的全文文章，德语或西班牙语在青光眼儿童中报告了PROM。确定的PROM的研究选择和方法学质量评估由两名独立的审阅者使用七点检查表进行。内容被映射到世界卫生组织国际功能分类，残疾与健康。系统评价在PROSPERO（IDCRD42022353936）中进行了前瞻性注册。
结果：检索到的搜索策略符合3295项。筛选了2901项研究，使用十种不同的工具确定了11篇相关文章。仪器解决了功能视觉能力(FVA)，视觉相关生活质量（VRQoL），健康相关QoL（HRQoL），生活满意度（LS）。六种仪器适用于儿童。七份问卷获得的正面评分最高（5/7）。这些仪器都没有考虑到儿童青光眼患者在发育过程中的观点。
结论：本系统综述提供了用于儿童青光眼队列的特定视力和通用健康PRO仪器的描述性目录。缺乏专门为儿童青光眼开发的仪器，这可能会导致缺少重要因素，例如用滴眼液进行永久性治疗，重复的手术和疾病的遗传性，在调查青光眼儿童的生活质量时。
结论：儿童青光眼在生命的所有阶段都会损害视力和生活质量。因此，PROM需要涵盖许多不同的年龄组和主题。各种仪器已被用于评估儿童青光眼患者的患者报告结果，然而,尚不清楚哪种PROM具有最高的方法学质量,并且最符合儿童青光眼患者的需求.
方法：搜索MEDLINE（PubMed），科克伦图书馆,WebofScienceandPsycINFO(EBSCO)。我们用英语收录了同行评审的过去十年的全文文章，德语或西班牙语在青光眼儿童中报告了PROM。确定的PROM的研究选择和方法学质量评估由两名独立的审阅者使用七点检查表进行。内容被映射到世界卫生组织国际功能分类，残疾与健康。系统评价在PROSPERO（IDCRD42022353936）中进行了前瞻性注册。
结果：检索到的搜索策略符合3295项。筛选了2901项研究，使用十种不同的工具确定了11篇相关文章。仪器解决了功能视觉能力(FVA)，视觉相关生活质量（VRQoL），健康相关QoL（HRQoL），生活满意度（LS）。六种仪器适用于儿童。七份问卷获得的正面评分最高（5/7）。这些仪器都没有考虑到儿童青光眼患者在发育过程中的观点。
结论：本系统综述提供了用于儿童青光眼队列的特定视力和通用健康PRO仪器的描述性目录。缺乏专门为儿童青光眼开发的仪器，这可能会导致缺少重要因素，例如用滴眼液进行永久性治疗，重复的手术和疾病的遗传性，在调查青光眼儿童的生活质量时。
