Please use this identifier to cite or link to this item: https://observatorio.fm.usp.br/handle/OPI/37122
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dc.contributorSistema FMUSP-HC: Faculdade de Medicina da Universidade de São Paulo (FMUSP) e Hospital das Clínicas da FMUSP
dc.contributor.authorLACY, Gabrielle D.
dc.contributor.authorABALEM, Maria Fernanda
dc.contributor.authorPOPOVA, Lilia T.
dc.contributor.authorSANTOS, Erin P.
dc.contributor.authorYU, Gina
dc.contributor.authorRAKINE, Hanan Y.
dc.contributor.authorROSENTHAL, Julie M.
dc.contributor.authorEHRLICH, Joshua R.
dc.contributor.authorMUSCH, David C.
dc.contributor.authorJAYASUNDERA, K. Thiran
dc.date.accessioned2020-08-20T13:27:34Z-
dc.date.available2020-08-20T13:27:34Z-
dc.date.issued2020
dc.identifier.citationOPHTHALMIC GENETICS, v.41, n.4, p.315-324, 2020
dc.identifier.issn1381-6810
dc.identifier.urihttps://observatorio.fm.usp.br/handle/OPI/37122-
dc.description.abstractPurpose Generate content for a patient-reported outcome (PRO) measure for use in future clinical trials for inherited retinal degenerations. Methods Patients at the University of Michigan Kellogg Eye Center with a clinical diagnosis of inherited retinal degeneration with varying phenotypes were recruited for interviews. First, in-depth interviews were performed to solicit a wide range of patient experiences pertaining to visual function. Coders qualitatively analyzed the transcripts from these interviews using Atlas.ti software (Version 8.1.3 (522)) to draft questionnaire items. Next, the questionnaire was tested and refined based on participant feedback in cognitive interviews and administrator feedback in the pilot survey administration (pilot interviews). Results A total of 55 participants with a clinical diagnosis of inherited retinal degeneration were interviewed throughout the three study phases: in-depth interviews (n = 26), cognitive interviews (n = 16), and pilot interviews (n = 13). Coded items were analyzed for frequency of occurrence and related themes, then organized into common domains. Within each domain, PRO items were drafted to address the functional limitations or adaptations experienced by patients. Conclusions Items for a PRO measure have been drafted and evaluated for interpretability in the target inherited retinal degeneration patient population. Content validity for the items was established through a process of in-depth interviews, cognitive interviews, and pilot interviews.eng
dc.language.isoeng
dc.publisherTAYLOR & FRANCIS INCeng
dc.relation.ispartofOphthalmic Genetics
dc.rightsrestrictedAccesseng
dc.subjectPatient-reported outcomeseng
dc.subjectinherited retinal degenerationeng
dc.subjectretinal dystrophyeng
dc.subjectgene therapyeng
dc.subjectMichigan retinal degeneration questionnaireeng
dc.subject.othergoldmann visual-fieldseng
dc.subject.otherquality-of-lifeeng
dc.subject.otherretinitis-pigmentosaeng
dc.subject.otherpro instrumentseng
dc.subject.othergene-therapyeng
dc.subject.othervariabilityeng
dc.subject.otherhealtheng
dc.subject.otherscaleeng
dc.titleContent generation for patient-reported outcome measures for retinal degeneration therapeutic trialseng
dc.typearticleeng
dc.rights.holderCopyright TAYLOR & FRANCIS INCeng
dc.identifier.doi10.1080/13816810.2020.1776337
dc.identifier.pmid32571121
dc.subject.wosGenetics & Heredityeng
dc.subject.wosOphthalmologyeng
dc.type.categoryoriginal articleeng
dc.type.versionpublishedVersioneng
hcfmusp.author.externalLACY, Gabrielle D.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalPOPOVA, Lilia T.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalSANTOS, Erin P.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalYU, Gina:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalRAKINE, Hanan Y.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalROSENTHAL, Julie M.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalEHRLICH, Joshua R.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.author.externalMUSCH, David C.:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA; Univ Michigan, Sch Publ Hlth, Dept Epidemiol, Ann Arbor, MI 48109 USA
hcfmusp.author.externalJAYASUNDERA, K. Thiran:Univ Michigan, Sch Med, Dept Ophthalmol & Visual Sci, Ann Arbor, MI USA
hcfmusp.description.beginpage315
hcfmusp.description.endpage324
hcfmusp.description.issue4
hcfmusp.description.volume41
hcfmusp.origemWOS
hcfmusp.origem.idWOS:000550162100004
hcfmusp.origem.id2-s2.0-85087379009
hcfmusp.publisher.cityPHILADELPHIAeng
hcfmusp.publisher.countryUSAeng
hcfmusp.relation.referenceBainbridge JWB, 2015, NEW ENGL J MED, V372, P1887, DOI 10.1056/NEJMoa1414221eng
hcfmusp.relation.referenceBittner AK, 2011, OPTOMETRY VISION SCI, V88, P1496, DOI 10.1097/OPX.0b013e3182348d0beng
hcfmusp.relation.referenceBittner AK, 2011, INVEST OPHTH VIS SCI, V52, P8042, DOI 10.1167/iovs.11-8321eng
hcfmusp.relation.referenceBittner AK, 2013, BRIT J OPHTHALMOL, V97, P145, DOI 10.1136/bjophthalmol-2012-302116eng
hcfmusp.relation.referenceChaumet-Riffaud AE, 2017, AM J OPHTHALMOL, V177, P169, DOI 10.1016/j.ajo.2017.02.016eng
hcfmusp.relation.referenceDaiger S. P., 1998, IOVS, V39, pS295eng
hcfmusp.relation.referenceFDA Ctr Drug Evaluation Res, 2006, HEALTH QUAL LIFE OUT, V4, DOI 10.1186/1477-7525-4-79eng
hcfmusp.relation.referenceFishman GA, 2005, RETINA-J RET VIT DIS, V25, P1014, DOI 10.1097/00006982-200512000-00010eng
hcfmusp.relation.referenceGroot W, 2000, J HEALTH ECON, V19, P403, DOI 10.1016/S0167-6296(99)00037-5eng
hcfmusp.relation.referenceKiser AK, 2005, OPTOMETRY VISION SCI, V82, P946, DOI 10.1097/01.opx.0000187863.12609.7beng
hcfmusp.relation.referenceLam BL, 2019, AM J OPHTHALMOL, V197, P65, DOI 10.1016/j.ajo.2018.09.012eng
hcfmusp.relation.referenceLayes A, 2012, SOC SCI MED, V75, P1, DOI 10.1016/j.socscimed.2011.10.030eng
hcfmusp.relation.referenceMacLaren RE, 2014, LANCET, V383, P1129, DOI 10.1016/S0140-6736(13)62117-0eng
hcfmusp.relation.referenceMassof RW, 2013, OPTOMETRY VISION SCI, V90, P788, DOI 10.1097/OPX.0000000000000011eng
hcfmusp.relation.referenceMokkink LB, 2010, QUAL LIFE RES, V19, P539, DOI 10.1007/s11136-010-9606-8eng
hcfmusp.relation.referencePatrick DL, 2007, VALUE HEALTH, V10, pS125, DOI 10.1111/j.1524-4733.2007.00275.xeng
hcfmusp.relation.referencePatrick DL, 2011, VALUE HEALTH, V14, P978, DOI 10.1016/j.jval.2011.06.013eng
hcfmusp.relation.referencePatrick DL, 2011, VALUE HEALTH, V14, P967, DOI 10.1016/j.jval.2011.06.014eng
hcfmusp.relation.referencePrem Senthil Mallika, 2017, J Patient Rep Outcomes, V1, P15, DOI 10.1186/s41687-017-0023-4eng
hcfmusp.relation.referencePRESSER S, 1980, PUBLIC OPIN QUART, V44, P70, DOI 10.1086/268567eng
hcfmusp.relation.referenceRussell S, 2017, LANCET, V390, P849, DOI 10.1016/S0140-6736(17)31868-8eng
hcfmusp.relation.referenceSchneider S, 2016, QUAL LIFE RES, V25, P2511, DOI 10.1007/s11136-016-1293-7eng
hcfmusp.relation.referenceSenthil MP, 2019, OPTOMETRY VISION SCI, V96, P27, DOI 10.1097/OPX.0000000000001317eng
hcfmusp.relation.referenceSenthil MP, 2017, SURV OPHTHALMOL, V62, P546, DOI 10.1016/j.survophthal.2016.12.011eng
hcfmusp.relation.referenceSzlyk JP, 2001, OPHTHALMOLOGY, V108, P65, DOI 10.1016/S0161-6420(00)00413-9eng
hcfmusp.relation.referenceThompson DA, 2015, INVEST OPHTH VIS SCI, V56, P918, DOI 10.1167/iovs.14-16049eng
hcfmusp.relation.referenceZahid S, 2014, ADV EXP MED BIOL, V801, P131, DOI 10.1007/978-1-4614-3209-8_17eng
hcfmusp.relation.referenceZampaglione E, 2020, GENET MED, V22, P1079, DOI 10.1038/s41436-020-0759-8eng
dc.description.indexMEDLINEeng
dc.identifier.eissn1744-5094
hcfmusp.citation.scopus4-
hcfmusp.scopus.lastupdate2022-04-29-
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