Evidence map›Paper›PMID 39291796›Full record

ArticlePediatric pulmonology2024

A survey of cystic fibrosis physicians' views on lung transplant referral in the era of elexacaftor/tezacaftor/ivacaftor.

Nora Burdis, Tijana Milinic, Lauren E Bartlett, Louisa Goss, Erin Tallarico, Abigail Boyle, Abigail Thaxton, Grant A Turner, Luke J Benvenuto, Albert Faro and 3 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric pulmonology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

13 authors.

Nora BurdisDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.ORCID 0009-0004-4610-4769
Tijana MilinicDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.
Lauren E BartlettDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.
Louisa GossDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.
Erin TallaricoCystic Fibrosis Foundation, Bethesda, Maryland, USA.
Abigail BoyleCystic Fibrosis Foundation, Bethesda, Maryland, USA.
Abigail ThaxtonCystic Fibrosis Foundation, Bethesda, Maryland, USA.
Grant A TurnerDivision of Pulmonary and Critical Care Medicine, University of California at Los Angeles, Los Angeles, California, USA.
Luke J BenvenutoDivision of Pulmonary and Critical Care Medicine, Columbia University, New York, New York, USA.
Albert FaroCystic Fibrosis Foundation, Bethesda, Maryland, USA.
Christopher H GossDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.
Siddhartha G KapnadakDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.
Kathleen J RamosDivision of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of Washington, Seattle, Washington, USA.

Funding

Translational Research Center to Expedite Novel Therapies in Cystic FibrosisP30DK089507 · NIDDK · SEATTLE CHILDREN'S HOSPITAL · PI Christopher Hooper Goss, Lucas R Hoffman · 2010 to 2026
$21.4M
Palliative Care Research Training GrantT32HL125195 · NHLBI · UNIVERSITY OF WASHINGTON · PI KROSS, ERIN KATHRYN, SHARMA, RASHMI K. · 2015 to 2024
$3.2M
Preparation for lung transplant discussions and decisions among people with cystic fibrosisR01NR020470 · NINR · UNIVERSITY OF WASHINGTON · PI Kathleen Jessica Ramos · 2023 to 2026
$2.9M
Cystic Fibrosis Foundation 005129D122Cystic Fibrosis Foundation R01NR020470Cystic Fibrosis Foundation RAMOS23A0NHLBI NIH HHS T32 HL125195NIDDK NIH HHS P30 DK089507NIH HHS P30 DK089507NIH HHS T32 HL125195NINR NIH HHS R01 NR020470
6 · The paper itself

Abstract

rationaleIn 2015, a survey of cystic fibrosis (CF) physicians showed significant gaps in lung transplant (LTx) referral knowledge. Subsequently, LTx referral guidelines for people with CF were published, and elexacaftor/tezacaftor/ivacaftor (ETI) became available for >80% of people in the United States (US). We sought to assess physicians' LTx referral knowledge and self-reported referral practices.

methodsCF center directors in the US were surveyed about LTx. Questions addressed transplant referral indications, contraindications, testing, and the impact of ETI on referral timing. Thematic analysis was used to assess responses to open-ended questions.

resultsThere were 110/309 (36%) responses. Respondents identified several referral indications, including rapid decline in FEV

conclusionsWhile physician knowledge about LTx referral indications appears improved since the CF referral guidelines were published, uncertainty about referral timing is pervasive, and the guidelines will need to be updated as more data become available about the long-term effectiveness of ETI in advanced lung disease.

Indexed as

AminophenolsBenzodioxolesCystic FibrosisDrug CombinationsIndolesLung TransplantationPyrazolesPyridinesQuinolonesReferral and ConsultationAttitude of Health PersonnelFemaleHumansMalePhysiciansPractice Patterns, Physicians'AminophenolsBenzodioxolesDrug Combinationselexacaftor, ivacaftor, tezacaftor drug combinationIndolesPyrazolesPyridinesPyrrolidinesQuinolinesQuinolonescystic fibrosiselexacaftor/tezacaftor/ivacaftorlung transplantationphysician surveyreferral

Identifiers

PMID39291796
PMCPMC11602374

What OpenQuestion holds

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LicenceTDM
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.