Evidence map›Paper›PMID 34127469›Full record

ArticleCanadian family physician Medecin de famille canadien2021

Primary care providers' role in newborn screening result notification for cystic fibrosis.

Robin Z Hayeems, Fiona A Miller, Carolyn J Barg, Yvonne Bombard, Pranesh Chakraborty, Beth K Potter, Sarah Patton, Jessica Peace Bytautas, Karen Tam, Louise Taylor and 6 more

Open access · diamondAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Canadian family physician Medecin de famille canadien, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed, 1 pooled it
1.0field-weighted citation impact, top 23% 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

9 citing papers in PubMed, 1 synthesis or guideline pooled it, 12 citations in OpenAlex.

  1. Pooled it
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  4. Review
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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

16 authors at 12 institutions in 4 countries.

Robin Z HayeemsScientist in the Child Health Evaluative Sciences Program at the Hospital for Sick Children in Toronto, Ont, and Associate Professor in the Institute of Health Policy, Management and Evaluation at the University of Toronto. robin.hayeems@sickkids.ca.
Fiona A MillerProfessor of Health Policy and holds the Chair in Health Management Strategies at the Institute of Health Policy, Management and Evaluation at the University of Toronto.
Carolyn J BargResearch analyst at Health Quality Ontario in Toronto.
Yvonne BombardScientist at the Li Ka Shing Knowledge Institute at St Michael's Hospital in Toronto and Associate Professor in the Institute of Health Policy, Management and Evaluation at the University of Toronto.
Pranesh ChakrabortyExecutive Director and Chief Medical Officer of Newborn Screening Ontario in Ottawa, a medical biochemist in the Department of Pediatrics at the Children's Hospital of Eastern Ontario in Ottawa, and Associate Professor of Pediatrics at the University of Ottawa.
Beth K PotterAssociate Professor in the Department of Epidemiology and Community Medicine at the University of Ottawa and holds the University Research Chair in Health Services for Children with Rare Diseases.
Sarah PattonResearch Officer in the Institute of Health Policy, Management and Evaluation at the University of Toronto at the time of the study.
Jessica Peace BytautasDoctoral student in the Dalla Lana School of Public Health and a research assistant in the Institute of Health Policy, Management and Evaluation at the University of Toronto.
Karen TamCertified genetic counselor and screening specialist at Newborn Screening Ontario.
Louise TaylorNurse practitioner with expertise in caring for children with cystic fibrosis at the Hospital for Sick Children.
Elizabeth KerrClinical neuropsychologist and a scientist in the Department of Pediatrics, Division of Neurology, at the Hospital for Sick Children, and Adjunct Faculty in the Department of Pediatrics at the University of Toronto.
Christine DaviesCertified genetic counselor in Ottawa.
Jennifer MilburnOperations Director for Newborn Screening Ontario.
Felix RatjenDivision Chief of Pediatric Respiratory Medicine, Co-lead of the Cystic Fibrosis Centre, Senior Scientist at the Research Institute in the Translational Medicine research program, and Medical Director of the Clinical Research Unit, all at the Hospital for Sick Children, and Professor of Pediatrics at the University of Toronto.
Astrid GuttmannClinician scientist in the Division of Pediatric Medicine at the Hospital for Sick Children, Chief Science Officer and Senior Scientist at ICES, and Professor of Pediatrics with a cross appointment at the Institute of Health Policy, Management and Evaluation and the Epidemiology Division of the Dalla Lana School of Public Health at the University of Toronto.
June C CarrollFamily physician and clinician scientist, Professor, and Sydney G. Frankfort Chair in Family Medicine in the Department of Family and Community Medicine with the Sinai Health System and the University of Toronto.
Hospital for Sick Children · CAInstitute of Health Economics · CANewborn Screening Ontario · CAAmerican Institute of Certified Public Accountants · USCenter for Children · USChildren's Hospital of Eastern Ontario · CADepartment of Health Services · NPInstitute of Health Services and Policy Research · CAQuality Research · USSickKids Foundation · CASinai Health System · USSt. Michael's Hospital · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo explore primary care providers' (PCPs') role in result notification for newborn screening (NBS) for cystic fibrosis (CF), given that expanded NBS has increased the number of positive screening test results, drawing attention to the role of PCPs in supporting families.

designCross-sectional survey and qualitative interviews.

settingOntario.

participantsPrimary care providers (FPs, pediatricians, and midwives) who received a positive CF NBS result for an infant in their practice in the 6 months before the study.

main outcome measuresWhether the PCP notified the family of the initial positive CF screening result.

resultsData from 321 PCP surveys (response rate of 51%) are reported, including 208 FPs, 68 pediatricians, and 45 midwives. Interviews were completed with 34 PCPs. Most (65%) surveyed PCPs reported notifying the infant's family of the initial positive screening result; 81% agreed that they have an important role to play in NBS; and 88% said it was important for PCPs, rather than the NBS centre, to notify families of initial positive results. With support and information from NBS centres, 68% would be extremely or very confident in doing so; this dropped to 54% when reflecting on their recent reporting experience. More than half (58%) of all PCPs said written point-of-care information from the NBS centre was the most helpful format. Adjusted for relevant factors, written educational information was associated with a lower rate of notifying families than written plus verbal information (risk ratio of 0.79; 95% CI 0.69 to 0.92). In the interviews, PCPs emphasized the challenge of balancing required content knowledge with the desire for the news to come from a familiar provider.

conclusionMost PCPs notify families of NBS results and value this role. These data are relevant as NBS programs and other genomic services expand and consider ways of keeping PCPs confident and actively involved.

Indexed as

Cystic FibrosisNeonatal ScreeningCross-Sectional StudiesHumansInfantInfant, NewbornOntarioPrimary Health Care

Identifiers

PMID34127469
PMCPMC8202749
OpenAlexW3167720310

What OpenQuestion holds

Textmetadata
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.