Evidence map›Paper›PMID 40434014›Full record

ArticleTherapeutic advances in respiratory disease

Perspectives of people with cystic fibrosis considering parenthood surrounding preconception and prenatal genetic counseling and testing.

Gopika Rajanikanth, Asher Prangley, Olivia M Stransky, Elinor Langfelder-Schwind, Jodie Vento, Elizabeth Felter, Traci M Kazmerski

Abstract read
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Article in Therapeutic advances in respiratory disease. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
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

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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

3 citing papers in PubMed.

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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

7 authors.

Gopika RajanikanthDepartment of Human Genetics, School of Public Health, University of Pittsburgh, Pittsburgh, PA 15213, USA.ORCID 0009-0003-0828-8942
Asher PrangleyDepartment of Pediatrics, School of Medicine, University of Pittsburgh Pittsburgh, PA, USA.
Olivia M StranskyDepartment of Pediatrics, School of Medicine, University of Pittsburgh Pittsburgh, PA, USA.
Elinor Langfelder-SchwindThe Cystic Fibrosis Center, Lenox Hill Hospital, New York, NY, USA.
Jodie VentoDepartment of Human Genetics, School of Public Health, University of Pittsburgh, Pittsburgh, PA, USA.
Elizabeth FelterDepartment of Behavioral and Community Health Sciences, School of Public Health, University of Pittsburgh, Pittsburgh, PA, USA.
Traci M KazmerskiDepartment of Pediatrics, School of Medicine, University of Pittsburgh Pittsburgh, PA, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPeople with cystic fibrosis (pwCF) are increasingly considering their reproductive options. Currently, there are many genetic testing options available for pwCF and their reproductive partners. Healthcare providers, including genetic counselors, can educate pwCF about these options and support them through the decision-making process.

objectiveThis study explored the role of genetics in the reproductive decisions of pwCF and their perspectives and experiences surrounding prenatal and preconception genetic counseling and testing.

designWe conducted a qualitative study of a national US sample of pwCF age ⩾18 years recruited from the CF Foundation Community Voice platform.

methodsWe conducted and recorded semi-structured telephone interviews with participants. We utilized Dedoose software and applied inductive thematic analysis to code the interview transcripts and elicit themes.

resultsWe interviewed 21 participants (76.2% women, 95.2% White, 4.8% Hispanic, 57.1% parents, 23.8% considering parenthood). Key themes included: (1) pwCF appeared to understand the genetics of CF and were typically first introduced to CF genetics by CF providers, school, or their parents; (2) pwCF had diverse perspectives on having a child with CF; (3) carrier testing was an important consideration for some participants when making decisions about biological parenthood; (4) participants understood the role of genetic counselors and valued their knowledge, but only half previously met with a genetic counselor; (5) pwCF believed genetics information should be presented during childhood/adolescence and reinforced when interested in family planning.

conclusionpwCF have discrepant views on passing on CF to future offspring, and although there is recognition of the role of genetic counseling and a desire for knowledge from genetic testing, genetic considerations are but one factor involved in parenthood decisions. Future work should develop patient-, provider-, or system-based interventions to best integrate high-quality genetics and genetic counseling care into the CF team for those with CF considering parenthood.

Indexed as

Cystic FibrosisGenetic CounselingGenetic TestingParentsPreconception CarePrenatal DiagnosisAdolescentAdultDecision MakingFemaleGenetic Carrier ScreeningGenetic Predisposition to DiseaseHealth Knowledge, Attitudes, PracticeHumansInterviews as TopicMalecystic fibrosisgenetic counselingpatient-centered careprenatal genetic testingqualitative researchreproductive decision-makingsexual and reproductive health

Identifiers

PMID40434014
PMCPMC12120275

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LicenceCC BY-NC-ND
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Registered trials

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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.