Geographical barriers to timely diagnosis of cystic fibrosis and anxiety level of parents during newborn screening in Turkey

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dc.contributor.authorGokdemir Y.
dc.contributor.authorEyuboglu T.S.
dc.contributor.authorEmiralioglu N.
dc.contributor.authorEr B.
dc.contributor.authorSen V.
dc.contributor.authorPekcan S.
dc.contributor.authorErgenekon A.P.
dc.contributor.authorHizal M.G.
dc.contributor.authorEryilmaz S.
dc.contributor.authorKose M.
dc.contributor.authorHangul M.
dc.contributor.authorCakir E.
dc.contributor.authorCokugras H.
dc.contributor.authorKılınc A.A.
dc.contributor.authorSasıhuseyinoglu A.S.
dc.contributor.authorAltintas D.U.
dc.contributor.authorGulen F.
dc.contributor.authorEski A.
dc.contributor.authorBingol A.
dc.contributor.authorOzdemir A.
dc.contributor.authorTopal E.
dc.contributor.authorGursoy T.R.
dc.contributor.authorGirit S.
dc.contributor.authorAy P.
dc.contributor.authorYılmaz O.
dc.date.accessioned2024-07-22T08:05:37Z
dc.date.available2024-07-22T08:05:37Z
dc.date.issued2021
dc.description.abstractBackground: Despite the availability of cystic fibrosis (CF) screening countrywide, diagnostic delay is still a crucial issue. The objectives of this study were to explore the stages of the NBS process, determine the risk factors associated with diagnostic delay and evaluate parent anxiety and experience throughout the process. Methods: This is a multicenter cross-sectional study. A questionnaire was completed by parents of newborns diagnosed with CF via NBS in 17 centers. Socio-demographic characteristics, parent knowledge and experiences related to NBS, sweat test availability in the region of residence, and time to the definitive CF diagnosis were assessed through this questionnaire. Parents' anxiety levels were evaluated through the State-Trait Anxiety Inventory scales 1 and 2. Delayed diagnosis (DD) was defined as a definite CF diagnosis beyond the 8th week of life. Predictors of delayed CF diagnosis were evaluated by univariate and multivariate analysis. Results: A total of 220 CF patients diagnosed via NBS were enrolled; 82 (37.3%) babies had DD. Multivariable analysis indicated that residence in the Southeast Anatolia region of Turkey (OR = 10.79, 95% CI = 2.37–49.2) was associated with a higher incidence of DD compared with other regions in Turkey. Of the total, 216 (98.1%) of the caregivers regarded the NBS program as useful and 180 (82%) reported high anxiety levels. Conclusion: The organization of newborn screening should take into account regional and socio-cultural characteristics to improve the early diagnosis of CF and also reduce the anxiety level of parents. © 2021 Wiley Periodicals LLC
dc.identifier.DOI-ID10.1002/ppul.25586
dc.identifier.issn87556863
dc.identifier.urihttp://akademikarsiv.cbu.edu.tr:4000/handle/123456789/13196
dc.language.isoEnglish
dc.publisherJohn Wiley and Sons Inc
dc.subjectAnxiety
dc.subjectCross-Sectional Studies
dc.subjectCystic Fibrosis
dc.subjectDelayed Diagnosis
dc.subjectHumans
dc.subjectInfant, Newborn
dc.subjectNeonatal Screening
dc.subjectParents
dc.subjectTurkey
dc.subjecttrypsinogen
dc.subjectanxiety
dc.subjectanxiety assessment
dc.subjectArticle
dc.subjectcross-sectional study
dc.subjectcystic fibrosis
dc.subjectdelayed diagnosis
dc.subjectearly diagnosis
dc.subjectfemale
dc.subjectgeography
dc.subjecthuman
dc.subjectinfant
dc.subjectinterview
dc.subjectmajor clinical study
dc.subjectmale
dc.subjectnewborn screening
dc.subjectparent
dc.subjectperinatal period
dc.subjectprenatal period
dc.subjectquestionnaire
dc.subjectrisk factor
dc.subjectState Trait Anxiety Inventory 1
dc.subjectState Trait Anxiety Inventory 2
dc.subjectsweat test
dc.subjectTurkey (republic)
dc.subjectanxiety
dc.subjectchild parent relation
dc.subjectclinical trial
dc.subjectcystic fibrosis
dc.subjectdelayed diagnosis
dc.subjectetiology
dc.subjectmulticenter study
dc.subjectnewborn
dc.subjectturkey (bird)
dc.titleGeographical barriers to timely diagnosis of cystic fibrosis and anxiety level of parents during newborn screening in Turkey
dc.typeArticle

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