Evidence map›Paper›PMID 40340670›Full record

ArticleBMC pulmonary medicine2025

Perspectives of people living with idiopathic pulmonary fibrosis: a qualitative and quantitative study.

Camilla S Graham, Brianna Bisson, Jessica Shore, Emily Pardy, Frank Salisbury, Lisa Lancaster, Tejaswini Kulkarni

Abstract read
In one paragraph

Article in BMC pulmonary medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

7 authors.

Camilla S GrahamPureTech Health, Boston, MA, USA.
Brianna BissonPureTech Health, Boston, MA, USA.
Jessica ShorePulmonary Fibrosis Foundation, Chicago, IL, USA.
Emily PardyPureTech Health, Boston, MA, USA.
Frank SalisburyPureTech Health, Boston, MA, USA.
Lisa LancasterVanderbilt University Medical Center, Nashville, TN, USA.
Tejaswini KulkarniUniversity of Alabama at Birmingham, Birmingham, AL, USA. tkulkarni@uabmc.edu.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe antifibrotic therapies, pirfenidone and nintedanib, have been approved since 2014 for idiopathic pulmonary fibrosis (IPF), but in the United States only a quarter of people living with IPF have ever been exposed to an antifibrotic. Understanding the burden and consequences of the disease and its treatment from the perspective of people living with IPF may facilitate improved education and outreach for them and their providers.

methodsQualitative interviews with people living with IPF explored perspectives on the diagnosis and management of IPF. Transcripts were analyzed to derive themes and topics, and illustrative quotes were selected for presentation. Data were developed into a 74-item on-line survey taken by additional people living with IPF. Quantitative survey data were analyzed with 95% confidence intervals and Z tests.

resultsSixteen people living with IPF underwent qualitative interviews. Direct quotes were used to derive and support themes, and survey stimuli are presented. Ninety additional people living with IPF responded to the on-line survey. 52% of survey participants were male, 54% used supplemental oxygen, and 34% had never been exposed to an antifibrotic. Top sources of information about their IPF diagnosis were their healthcare provider, the internet, and support groups. Most participants had one or more of shortness of breath, fatigue, or cough and over 40% described these symptoms as very burdensome. The most common reason for not starting an antifibrotic was, "I am waiting to start treatment until my symptoms worsen." For those treated with antifibrotics, (78%) agreed with a statement that their antifibrotic gives them hope even though around 90% had at least one side effect.

conclusionsMost individuals living with IPF experienced significant challenges due to their disease and its treatment, that substantially impacted their quality of life. A better understanding of these challenges can facilitate patient-centered and shared decision-making, ultimately enhancing outcomes and satisfaction for people living with IPF.

Indexed as

Antifibrotic AgentsIdiopathic Pulmonary FibrosisAgedAged, 80 and overDyspneaFemaleHumansIndolesInterviews as TopicMaleMiddle AgedPyridonesQualitative ResearchQuality of LifeSurveys and QuestionnairesAntifibrotic AgentsIndolesnintedanibpirfenidonePyridonesAntifibrotic therapyIdiopathic pulmonary fibrosisOxygen therapyQualitative researchQuality of life

Identifiers

PMID40340670
PMCPMC12060508

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LicenceCC BY-NC-ND
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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.