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

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dc.authoridRamasli Gursoy, Tugba/0000-0002-7064-7585
dc.authoridEr, Berrin/0000-0002-2256-3619
dc.authoridSismanlar Eyuboglu, Tugba/0000-0001-7284-4999
dc.authoridEşki, Aykut/0000-0001-5378-5663
dc.authoridEr, Berrin/0000-0002-2256-3619
dc.authoridEr, Berrin/0000-0002-2256-3619
dc.authoridGirit, Saniye/0000-0001-7556-6568
dc.authorwosidRamasli Gursoy, Tugba/AAA-7773-2020
dc.authorwosidhızal, mina gharibzadeh/ABG-9411-2021
dc.authorwosidEr, Berrin/ABB-3303-2021
dc.authorwosidSismanlar Eyuboglu, Tugba/AAK-5467-2020
dc.authorwosidEşki, Aykut/IYJ-0455-2023
dc.authorwosidEr, Berrin/KHW-6493-2024
dc.authorwosidEr, Berrin/AAO-8667-2020
dc.contributor.authorGokdemir, Yasemin
dc.contributor.authorEyuboglu, Tugba Sismanlar
dc.contributor.authorEmiralioglu, Nagehan
dc.contributor.authorEr, Berrin
dc.contributor.authorSen, Velat
dc.contributor.authorPekcan, Sevgi
dc.contributor.authorErgenekon, Almala Pinar
dc.date.accessioned2024-08-04T20:50:27Z
dc.date.available2024-08-04T20:50:27Z
dc.date.issued2021
dc.departmentİnönü Üniversitesien_US
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.en_US
dc.identifier.doi10.1002/ppul.25586
dc.identifier.endpage3231en_US
dc.identifier.issn8755-6863
dc.identifier.issn1099-0496
dc.identifier.issue10en_US
dc.identifier.pmid34273142en_US
dc.identifier.scopus2-s2.0-85111531165en_US
dc.identifier.scopusqualityQ1en_US
dc.identifier.startpage3223en_US
dc.identifier.urihttps://doi.org/10.1002/ppul.25586
dc.identifier.urihttps://hdl.handle.net/11616/100080
dc.identifier.volume56en_US
dc.identifier.wosWOS:000678870500001en_US
dc.identifier.wosqualityQ1en_US
dc.indekslendigikaynakWeb of Scienceen_US
dc.indekslendigikaynakScopusen_US
dc.indekslendigikaynakPubMeden_US
dc.language.isoenen_US
dc.publisherWileyen_US
dc.relation.ispartofPediatric Pulmonologyen_US
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanıen_US
dc.rightsinfo:eu-repo/semantics/closedAccessen_US
dc.subjectcystic fibrosisen_US
dc.subjectlate diagnosisen_US
dc.subjectparent anxietyen_US
dc.titleGeographical barriers to timely diagnosis of cystic fibrosis and anxiety level of parents during newborn screening in Turkeyen_US
dc.typeArticleen_US

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