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Tytuł pozycji:

The Michigan Retinal Degeneration Questionnaire: A Patient-Reported Outcome Instrument for Inherited Retinal Degenerations.

Tytuł :
The Michigan Retinal Degeneration Questionnaire: A Patient-Reported Outcome Instrument for Inherited Retinal Degenerations.
Autorzy :
Lacy GD; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Abalem MF; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA; Department of Ophthalmology and Otolaryngology, University of Sao Paulo Medical School, São Paulo, Brazil.
Andrews CA; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Popova LT; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Santos EP; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Yu G; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Rakine HY; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Baig N; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Ehrlich JR; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Fahim AT; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Branham KH; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Stelmack JA; Department of Low Vision Service, Illinois Eye and Ear Infirmary, University of Illinois College of Medicine, Chicago, Illinois, USA.
Swenor BK; Wilmer Eye Institute, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Dagnelie G; Wilmer Eye Institute, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Musch DC; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA; Department of Epidemiology, School of Public Health, University of Michigan, Ann Arbor, Michigan, USA.
Jayasundera KT; Kellogg Eye Center, Department of Ophthalmology and Visual Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA. Electronic address: .
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Źródło :
American journal of ophthalmology [Am J Ophthalmol] 2021 Feb; Vol. 222, pp. 60-68. Date of Electronic Publication: 2020 Aug 26.
Typ publikacji :
Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't
Język :
English
Imprint Name(s) :
Publication: 1999- : New York, NY : Elsevier Science
Original Publication: [Chicago, etc., Ophthalmic Pub. Co., etc.]
MeSH Terms :
Patient Reported Outcome Measures*
Quality of Life*
Psychometrics/*methods
Retinal Degeneration/*diagnosis
Activities of Daily Living ; Adolescent ; Adult ; Aged ; Aged, 80 and over ; Female ; Humans ; Incidence ; Male ; Michigan/epidemiology ; Middle Aged ; Retinal Degeneration/epidemiology ; Retinal Degeneration/physiopathology ; Retrospective Studies ; Surveys and Questionnaires ; Young Adult
References :
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Grant Information :
K12 EY022299 United States EY NEI NIH HHS; K23 EY026985 United States EY NEI NIH HHS; K23 EY027848 United States EY NEI NIH HHS; TL1 TR002242 United States TR NCATS NIH HHS
Entry Date(s) :
Date Created: 20200829 Date Completed: 20210316 Latest Revision: 20210316
Update Code :
20210317
PubMed Central ID :
PMC7907279
DOI :
10.1016/j.ajo.2020.08.032
PMID :
32858027
Czasopismo naukowe
Purpose: To create a psychometrically validated patient-reported outcome measure for inherited retinal degenerations.
Design: Qualitative and quantitative patient-reported outcome (PROs) questionnaire development using item response theory validation.
Methods: One hundred twenty-eight patients with a diagnosis of an inherited retinal degeneration at the Kellogg Eye Center (University of Michigan) were recruited and administered a 166-item questionnaire comprising 7 expert-defined domains. The questionnaire was re-administered 4-16 days later to a subset of 25 participants to assess test-retest variability. Graded response models were fit by Cai's Metropolis-Hastings Robbins-Monro algorithm using the R (version 3.6.3) package mirt. Model data were fit to assess questionnaire dimensionality, to estimate item information, and to score participants. Poorly functioning items were removed, and the model was refit to create the final questionnaire.
Results: The psychometrically validated PROs measure was reduced to a 59-item questionnaire measuring 7 unidimesnional domains: central vision, color vision, contrast sensitivity, scotopic function, photopic peripheral vision, mesopic peripheral vision, and photosensitivity. A total of 39 items were removed because of poor factor loading, low item information, poor person-ability differentiation, or high item-level interdependence. This novel questionnaire produces a reliable domain score for person ability that does not show significant test-retest variability across repeated administration.
Conclusions: The final PRO questionnaire, known as the Michigan Retinal Degeneration Questionnaire, is psychometrically validated and available for use in the evaluation of patients with inherited retinal degenerations.
(Copyright © 2020 Elsevier Inc. All rights reserved.)

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