Evidence map›Paper›PMID 35980961›Full record

ArticlePloS one2022

Parents' views on accepting, declining, and expanding newborn bloodspot screening.

Sylvia M van der Pal, Sophie Wins, Jasmijn E Klapwijk, Tessa van Dijk, Adriana Kater-Kuipers, Catharina P B van der Ploeg, Suze M P J Jans, Stephan Kemp, Rendelien K Verschoof-Puite, Lion J M van den Bosch and 1 more

Open access · goldAbstract read
In one paragraph

Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
18citing papers in PubMed, 2 pooled it
1.9field-weighted citation impact, top 14% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

18 citing papers in PubMed, 2 syntheses or guidelines pooled it, 19 citations in OpenAlex.

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  12. Evaluation of the Florida Newborn Screening Program Education Campaign.International journal of neonatal screening · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 4 institutions in 1 country.

Sylvia M van der PalChild Health, TNO, Leiden, The Netherlands.ORCID 0000-0001-9706-9298
Sophie WinsChild Health, TNO, Leiden, The Netherlands.
Jasmijn E KlapwijkDepartment of Human Genetics and Amsterdam Reproduction & Development Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0002-6775-6561
Tessa van DijkDepartment of Human Genetics and Amsterdam Reproduction & Development Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Adriana Kater-KuipersDepartment of Human Genetics and Amsterdam Reproduction & Development Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Catharina P B van der PloegChild Health, TNO, Leiden, The Netherlands.
Suze M P J JansChild Health, TNO, Leiden, The Netherlands.
Stephan KempDepartment of Clinical Chemistry, Laboratory Genetic Metabolic Diseases, Amsterdam Neuroscience, Amsterdam Gastroenterology Endocrinology Metabolism, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Rendelien K Verschoof-PuiteDepartment of Vaccine Supply and Prevention Programmes, National Institute for Public Health and the Environment (RIVM), Bilthoven, The Netherlands.
Lion J M van den BoschCentre for Population Screening, National Institute for Public Health and the Environment (RIVM), Bilthoven, The Netherlands.
Lidewij HennemanDepartment of Human Genetics and Amsterdam Reproduction & Development Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0003-3531-0597
Amsterdam University Medical Centers · NLNetherlands Organisation for Applied Scientific Research · NLNational Institute for Public Health and the Environment · NLAmsterdam Neuroscience · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionThe goal of newborn bloodspot screening (NBS) is the early detection of treatable disorders in newborns to offer early intervention. Worldwide, the number of conditions screened for is expanding, which might affect public acceptance. In the Netherlands, participation is high (>99%), but little is known about how parents perceive NBS. This study assessed parents' views on accepting, declining and expanding NBS.

methodsA total of 804 of 6051 (13%) invited parents who participated in NBS in the Netherlands during the last two weeks of December 2019, and 48 of 1162 (4%) invited parents who declined participation in NBS in 2019 and 2020, completed a questionnaire.

resultsThe most important reason for parents to participate in NBS was to prevent health complaints, whereas the most important reason to decline NBS was parents' viewpoint on life and the belief that the heel prick would be painful for the child. Compared to NBS participants, respondents who declined NBS were more actively religious, considered alternative medicine or lifestyle more important, were less inclined to vaccinate their child for infectious diseases, and reported more doubt about NBS participation (all differences p < .001). Informed choice was lower among respondents who declined NBS (44%) compared to participants in NBS (83%, p < .001), mostly due to insufficient knowledge. Of the NBS participants, 95% were positive about NBS expansion. Most NBS participants agreed to include conditions that could unintentionally reveal a diagnosis in the mother instead of the child (86%) or a condition that may not cause symptoms until later in the child's life (84%).

conclusionMost participants made an informed decision to participate in NBS and are positive about screening for more conditions. Insights into parents' views on (non-)participation and expansion of NBS can help to ensure that NBS suits the population needs while safeguarding ethical principles for screening.

Indexed as

Neonatal ScreeningParentsChildEarly DiagnosisHumansInfant, NewbornNetherlandsSurveys and Questionnaires

Identifiers

PMID35980961
PMCPMC9387838
OpenAlexW4292686634

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.