German newborn screening for Cystic fibrosis
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German newborn screening for Cystic fibrosis : Parental perspectives and suggestions for improvements. / Gapp, Simon; Garbade, Sven F; Feyh, Patrik; Brockow, Inken; Nennstiel, Uta; Hoffmann, Georg F; Sommerburg, Olaf; Gramer, Gwendolyn.
In: PEDIATR PULM, Vol. 58, No. 3, 03.2023, p. 844-852.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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TY - JOUR
T1 - German newborn screening for Cystic fibrosis
T2 - Parental perspectives and suggestions for improvements
AU - Gapp, Simon
AU - Garbade, Sven F
AU - Feyh, Patrik
AU - Brockow, Inken
AU - Nennstiel, Uta
AU - Hoffmann, Georg F
AU - Sommerburg, Olaf
AU - Gramer, Gwendolyn
N1 - © 2022 The Authors. Pediatric Pulmonology published by Wiley Periodicals LLC.
PY - 2023/3
Y1 - 2023/3
N2 - PURPOSE: Cystic fibrosis (CF) was added to the German newborn bloodspot screening (NBS) panel in 2016. This study assesses parental perceptions of CF-NBS and confirmatory testing.METHODS: Prospective questionnaire-based survey administered to parents of children with positive CF-NBS over 40 months after initiation of CF-NBS in Southwest Germany. Parental perceptions were compared to results from Bavaria and Switzerland.RESULTS: Questionnaires with 29 standardized questions were sent to 343 families with children born between October 2016 and January 2020. A total of 178 (51.9%) replied. Although required by law, only a minority were informed about CF-NBS by a physician. The information provided about NBS was sufficient for 78% of parents. Regarding the information about positive CF-NBS, 52.9% were satisfied but the majority expressed negative emotions (89.5%). While most of these were resolved after confirmatory diagnostics, 17% of parents of children with false-positive CF-NBS and 66.7% of children confirmed with CF remained anxious. Waiting time for sweat testing was >3 days in 56.1%, considerably longer than in more centralized screening systems. Parents who waited for a maximum of 3 days were significantly more satisfied. 70.7% of parents were satisfied with the information given during confirmatory diagnostics and 91.4% were satisfied with participating in CF-NBS.CONCLUSIONS: CF-NBS stands in high regard with parents. Smooth organization, timely initiation of confirmatory testing, and professional communication are most important to limit parental anxiety. A more centralized system of confirmatory diagnostics appears advantageous in several regards as it reduces time from positive NBS to final diagnosis and increases parental satisfaction.
AB - PURPOSE: Cystic fibrosis (CF) was added to the German newborn bloodspot screening (NBS) panel in 2016. This study assesses parental perceptions of CF-NBS and confirmatory testing.METHODS: Prospective questionnaire-based survey administered to parents of children with positive CF-NBS over 40 months after initiation of CF-NBS in Southwest Germany. Parental perceptions were compared to results from Bavaria and Switzerland.RESULTS: Questionnaires with 29 standardized questions were sent to 343 families with children born between October 2016 and January 2020. A total of 178 (51.9%) replied. Although required by law, only a minority were informed about CF-NBS by a physician. The information provided about NBS was sufficient for 78% of parents. Regarding the information about positive CF-NBS, 52.9% were satisfied but the majority expressed negative emotions (89.5%). While most of these were resolved after confirmatory diagnostics, 17% of parents of children with false-positive CF-NBS and 66.7% of children confirmed with CF remained anxious. Waiting time for sweat testing was >3 days in 56.1%, considerably longer than in more centralized screening systems. Parents who waited for a maximum of 3 days were significantly more satisfied. 70.7% of parents were satisfied with the information given during confirmatory diagnostics and 91.4% were satisfied with participating in CF-NBS.CONCLUSIONS: CF-NBS stands in high regard with parents. Smooth organization, timely initiation of confirmatory testing, and professional communication are most important to limit parental anxiety. A more centralized system of confirmatory diagnostics appears advantageous in several regards as it reduces time from positive NBS to final diagnosis and increases parental satisfaction.
KW - Infant, Newborn
KW - Child
KW - Humans
KW - Neonatal Screening/methods
KW - Cystic Fibrosis/diagnosis
KW - Prospective Studies
KW - Anxiety
KW - Parents/psychology
U2 - 10.1002/ppul.26263
DO - 10.1002/ppul.26263
M3 - SCORING: Journal article
C2 - 36444714
VL - 58
SP - 844
EP - 852
JO - PEDIATR PULM
JF - PEDIATR PULM
SN - 8755-6863
IS - 3
ER -
