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

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dc.contributor.authorGÖKDEMİR, YASEMİN
dc.contributor.authorEyuboglu, Tugba Sismanlar
dc.contributor.authorEMİRALİOĞLU, NAGEHAN
dc.contributor.authorER, BERRİN
dc.contributor.authorSen, Velat
dc.contributor.authorPekcan, Sevgi
dc.contributor.authorErgenekon, Almala Pinar
dc.contributor.authorHizal, Mina Gharibzadeh
dc.contributor.authorEryilmaz, Sanem
dc.contributor.authorKÖSE, MEHMET
dc.contributor.authorHangul, Melih
dc.contributor.authorÇAKIR, Erkan
dc.contributor.authorCokugras, Haluk
dc.contributor.authorKilinc, Ayse Ayzit
dc.contributor.authorSasihuseyinoglu, Ayse Senay
dc.contributor.authorAltintas, Derya Ufuk
dc.contributor.authorGulen, Figen
dc.contributor.authorEski, Aykut
dc.contributor.authorBingol, Aysen
dc.contributor.authorOzdemir, Ali
dc.contributor.authorTopal, Erdem
dc.contributor.authorGursoy, Tugba Ramasli
dc.contributor.authorGirit, Saniye
dc.contributor.authorAy, Pinar
dc.contributor.authorYilmaz, Ozge
dc.contributor.institutionauthorÇAKIR, ERKAN
dc.date.accessioned2021-09-21T20:59:15Z
dc.date.available2021-09-21T20:59:15Z
dc.date.issued2021-07-01T00:00:00Z
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.
dc.identifier.citationGÖKDEMİR Y., Eyuboglu T. S. , EMİRALİOĞLU N., ER B., Sen V., Pekcan S., Ergenekon A. P. , Hizal M. G. , Eryilmaz S., KÖSE M., et al., -Geographical barriers to timely diagnosis of cystic fibrosis and anxiety level of parents during newborn screening in Turkey-, PEDIATRIC PULMONOLOGY, 2021
dc.identifier.doi10.1002/ppul.25586
dc.identifier.pubmed34273142
dc.identifier.scopus85111531165
dc.identifier.urihttp://hdl.handle.net/20.500.12645/29486
dc.identifier.wosWOS:000678870500001
dc.titleGeographical barriers to timely diagnosis of cystic fibrosis and anxiety level of parents during newborn screening in Turkey
dc.typeArticle
dspace.entity.typePublication
local.avesis.idc23fa7f5-3ba2-47d4-bbc4-58a3f10a314b
local.publication.isinternational1
relation.isAuthorOfPublication548bd03a-cc9a-4b60-9886-1787eb5f6a4d
relation.isAuthorOfPublication.latestForDiscovery548bd03a-cc9a-4b60-9886-1787eb5f6a4d
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