TY - JOUR
T1 - Psychosocial Impact of a True-Positive, False-Positive, or Inconclusive Newborn Bloodspot Screening Result
T2 - A Questionnaire Study among Parents
AU - van den Heuvel, Lieke M.
AU - van der Pal, Sylvia M.
AU - Verschoof-Puite, Rendelien K.
AU - Klapwijk, Jasmijn E.
AU - Elsinghorst, Ellen
AU - Dekkers, Eugènie
AU - van der Ploeg, Catharina P. B.
AU - Henneman, Lidewij
N1 - Publisher Copyright: © 2024 by the authors.
PY - 2024/3/1
Y1 - 2024/3/1
N2 - Expansion of newborn bloodspot screening (NBS) can increase health gain for more children but also increases the number of false-positive and uncertain results. The impact of abnormal and inconclusive NBS results on parental well-being and healthcare utilization was investigated. A questionnaire was sent to Dutch parents receiving an abnormal or inconclusive NBS result five weeks (T1) and four months (T2) post-NBS and compared to parents with a normal result (controls). In total, 35 true-positive (TP), 20 false-positive (FP), and 57 inconclusive (IC) participants and 268 controls filled out T1; 19 TP, 14 FP, 27 IC, and 116 controls filled out T2. Participants showed positive attitudes towards NBS. FP participants more often considered NBS less reliable. TP and FP participants experienced more negative emotions regarding the test result compared to controls at both T1 and T2, and IC only at T1. Parent-reported child vulnerability and perceptions of the newborn’s health status and of parenthood showed no differences. TP and FP participants reported more healthcare utilization at T1, and mainly TP at T2. TP and IC participants showed more emergency department visits at T1. The findings can be used to improve NBS programs and optimize support for families with various NBS results.
AB - Expansion of newborn bloodspot screening (NBS) can increase health gain for more children but also increases the number of false-positive and uncertain results. The impact of abnormal and inconclusive NBS results on parental well-being and healthcare utilization was investigated. A questionnaire was sent to Dutch parents receiving an abnormal or inconclusive NBS result five weeks (T1) and four months (T2) post-NBS and compared to parents with a normal result (controls). In total, 35 true-positive (TP), 20 false-positive (FP), and 57 inconclusive (IC) participants and 268 controls filled out T1; 19 TP, 14 FP, 27 IC, and 116 controls filled out T2. Participants showed positive attitudes towards NBS. FP participants more often considered NBS less reliable. TP and FP participants experienced more negative emotions regarding the test result compared to controls at both T1 and T2, and IC only at T1. Parent-reported child vulnerability and perceptions of the newborn’s health status and of parenthood showed no differences. TP and FP participants reported more healthcare utilization at T1, and mainly TP at T2. TP and IC participants showed more emergency department visits at T1. The findings can be used to improve NBS programs and optimize support for families with various NBS results.
KW - abnormal result
KW - child vulnerability
KW - inconclusive result
KW - newborn screening
KW - parental perceptions
KW - psychosocial impact
KW - questionnaire study
UR - http://www.scopus.com/inward/record.url?scp=85189167549&partnerID=8YFLogxK
U2 - 10.3390/ijns10010018
DO - 10.3390/ijns10010018
M3 - Article
C2 - 38535122
SN - 2409-515X
VL - 10
JO - International Journal of Neonatal Screening
JF - International Journal of Neonatal Screening
IS - 1
M1 - 18
ER -