The validation of inherited retinal disease-specific patient-reported outcome measures in adolescent patients

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art_SELVAN_The_validation_of_inherited_retinal_diseasespecific_patientreported_outcome_2023.PDF (1.17 MB)
Citações na Scopus
1
Tipo de produção
article
Data de publicação
2023
DOI
Scopus
Web of Science
PubMed
Título da Revista
ISSN da Revista
Título do Volume
Editora
TAYLOR & FRANCIS INC
Autores
SELVAN, Kavin
ABUZAITOUN, Rebhi
VINCENT, Ajoy
ANDREWS, Chris A. A.
LACY, Gabrielle D. D.
FARJO, Rafid
KAO, Karissa
KAO, Krystal
DAGNELIE, Gislin
Citação
OPHTHALMIC GENETICS, v.44, n.3, p.218-225, 2023
Projetos de Pesquisa
Unidades Organizacionais
Fascículo
Resumo
Purpose: To determine the validity of the validate the adult patient-reported outcome measure tools, the Michigan Retinal Degeneration Questionnaire (MRDQ) and Michigan Vision-Related Anxiety Questionnaire (MVAQ), in adolescent patients with inherited retinal diseases (IRDs).Methods: Ninety-one adolescent patients diagnosed with IRDs were recruited at the Hospital for Sick Children (University of Toronto) and the Kellogg Eye Center (University of Michigan). The patients were administered the MRDQ, MVAQ, and Patient Health Questionnaire-4 (PHQ-4). Test-retest variability was assessed in eighteen patients within 14 days of the initial administration. Adolescent responses were analyzed for validity and reliability. As a further validation step, comparisons were made to adult data from the original MRDQ and MVAQ studies to ensure consistency in response ranges.Results: The existing MRDQ and MVAQ content and format could accurately detect the impact of IRD on activities of daily living in adolescents with IRDs. No floor/ceiling effects were identified, test-retest reliability was established (r = 0.73-0.86), and no items were excluded after differential item functioning analysis. Domain and trait associations with visual acuity and IRD phenotypes were similar between adolescents and adults.Conclusions: The MRDQ and MVAQ are psychometrically validated questionnaires for which we have shown validity for use in adolescent patients with IRDs.
Palavras-chave
Patient-reported outcomes, PROM, inherited retinal disease, retinal dystrophy, gene therapy, clinical trial, pediatrics
URI
https://observatorio.fm.usp.br/handle/OPI/54198
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Coleções
Artigos e Materiais de Revistas Científicas - HC/ICHC