Evidence map›Paper›PMID 36722294›Full record

ArticleFamily practice2024

Primary care professionals' views on population-based expanded carrier screening: an online focus group study.

Lieke M van den Heuvel, Anke J Woudstra, Sanne van der Hout, Suze Jans, Tjerk Wiersma, Wybo Dondorp, Erwin Birnie, Phillis Lakeman, Lidewij Henneman, Mirjam Plantinga and 1 more

Open access · hybridAbstract read
In one paragraph

Article in Family practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
1.0field-weighted citation impact, top 22% 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

4 citing papers in PubMed, 4 citations in OpenAlex.

  1. Review
  2. Article
  3. Review
  4. Article
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 5 institutions in 1 country.

Lieke M van den HeuvelDepartment of Genetics, University Medical Centre Groningen/University of Groningen, Groningen, The Netherlands.ORCID 0000-0003-4248-320X
Anke J WoudstraDepartment of Human Genetics and Amsterdam Reproduction and Development Research Institute, Amsterdam UMC, Vrije Universiteit, Amsterdam, The Netherlands.ORCID 0000-0001-6685-6168
Sanne van der HoutDepartment of Health, Ethics & Society, Maastricht University Medical Centre/Maastricht University, Maastricht, The Netherlands.ORCID 0000-0003-2128-2951
Suze JansDepartment of Child Health, TNO, Leiden, The Netherlands.ORCID 0000-0001-7086-9412
Tjerk WiersmaDutch College of General Practitioners, Utrecht, The Netherlands.
Wybo DondorpDepartment of Health, Ethics & Society, Maastricht University Medical Centre/Maastricht University, Maastricht, The Netherlands.ORCID 0000-0003-4052-7192
Erwin BirnieDepartment of Genetics, University Medical Centre Groningen/University of Groningen, Groningen, The Netherlands.ORCID 0000-0002-4534-4857
Phillis LakemanDepartment of Human Genetics and Amsterdam Reproduction and Development Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0001-6385-1804
Lidewij HennemanDepartment of Human Genetics and Amsterdam Reproduction and Development Research Institute, Amsterdam UMC, Vrije Universiteit, Amsterdam, The Netherlands.ORCID 0000-0003-3531-0597
Mirjam PlantingaDepartment of Genetics, University Medical Centre Groningen/University of Groningen, Groningen, The Netherlands.ORCID 0000-0003-3350-9842
Irene M van LangenDepartment of Genetics, University Medical Centre Groningen/University of Groningen, Groningen, The Netherlands.ORCID 0000-0002-0960-7154
University Medical Center Groningen · NLAmsterdam University Medical Centers · NLMaastricht University Medical Centre · NLDutch College of General Practitioners · NLNetherlands Organisation for Applied Scientific Research · NL

Funding

The Netherlands Organisation for Health Research and Development 854020002
6 · The paper itself

Abstract

backgroundPopulation-based expanded carrier screening (ECS) involves screening for multiple recessive diseases offered to all couples considering a pregnancy or during pregnancy. Previous research indicates that in some countries primary care professionals are perceived as suitable providers for ECS. However, little is known about their perspectives. We therefore aimed to explore primary care professionals' views on population-based ECS.

methodsFour online focus groups with 14 general practitioners (GPs) and 16 community midwives were conducted in the Netherlands.

resultsOur findings highlight various perspectives on the desirability of population-based ECS. Participants agreed that ECS could enhance reproductive autonomy and thereby prevent suffering of the child and/or parents. However, they also raised several ethical, societal, and psychological concerns, including a tendency towards a perfect society, stigmatization, unequal access to screening and negative psychosocial consequences. Participants believed that provision of population-based ECS would be feasible if prerequisites regarding training and reimbursement for providers would be fulfilled. most GPs considered themselves less suitable or capable of providing ECS, in contrast to midwives who did consider themselves suitable. Nevertheless, participants believed that, if implemented, ECS should be offered in primary care or by public health services rather than as hospital-based specialized care, because they believed a primary care ECS offer increases access in terms of time and location.

conclusionsWhile participants believed that an ECS offer would be feasible, they questioned its desirability and priority. Studies on the desirability and feasibility of population-based ECS offered in primary care or public health settings are needed.

Indexed as

Attitude of Health PersonnelFocus GroupsGenetic Carrier ScreeningAdultFemaleGeneral PractitionersHumansMaleMiddle AgedMidwiferyNetherlandsPregnancyPrimary Health Careexpanded carrier screeningfocus groupsgeneral practitionersmidwivesprimary care professionalsviews

Identifiers

PMID36722294
PMCPMC11324326
OpenAlexW4318755147

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.