Systematic review of instruments for the assessment of patient reported outcomes and quality of life in childhood glaucoma patients
Authors:
Stingl, J. V., Cascant Ortolano, L., Azuara-Blanco, A., and Hoffmann, E. M.
Abstract:
TOPIC: To identify patient-reported outcome measures (PROMs), that have been used in children and adolescents with glaucoma, and to evaluate their methodological quality.
CLINICAL RELEVANCE: Childhood glaucoma impairs vision and quality of life 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 in patients with childhood glaucoma, however it is unclear which PROM has the highest methodological quality and complies best with the needs of childhood glaucoma patients.
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 ten years in English, German or Spanish language that reported PROMs in children with glaucoma. The study selection and methodological quality assessment of the identified PROMs was performed by two independent reviewers using a seven-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. 2901 studies were screened, and 11 relevant articles were identified using ten different instruments. The instruments addressed functional visual ability (FVA), vision-related quality of life (VRQoL), health-related QoL (HRQoL), and life satisfaction (LS). 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 childhood glaucoma patients during their development.
CONCLUSION: This systematic review provides a descriptive catalogue 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 quality of life in children with glaucoma.
