Evidence map›Paper›PMID 40347548›Full record

ArticlePatient education and counseling2025

Personal narratives to support learning about lung transplant for people with cystic fibrosis.

Dave Young, Lauren E Bartlett, Nick Reid, Andrea L Hartzler, Miranda C Bradford, Christopher H Goss, Joseph M Pilewski, Jordan M Dunitz, Milene Saavedra, Donna L Berry and 3 more

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In one paragraph

Article in Patient education and counseling, 2025. 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.

Dave YoungDepartment of Biology, University of Washington, Seattle, WA, USA.
Lauren E BartlettDepartment of Medicine, University of Washington, Seattle, WA, USA.
Nick ReidDepartment of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA, USA.
Andrea L HartzlerDepartment of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA, USA.
Miranda C BradfordBiostatistics Epidemiology and Analytics for Research (BEAR) Core, Seattle Children's Research Institute, Seattle, WA, USA.
Christopher H GossDepartment of Medicine, University of Washington, Seattle, WA, USA; CF Therapeutics Development Network Coordinating Center, Seattle Children's Research Institute, Seattle, WA, USA.
Joseph M PilewskiDepartment of Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.
Jordan M DunitzDepartment of Medicine, University of Minnesota, Minneapolis, MN, USA.
Milene SaavedraDepartment of Medicine, National Jewish Health, Denver, CO, USA.
Donna L BerryDepartment of Biobehavioral Nursing and Health Informatics, University of Washington, Seattle, WA, USA.
Siddhartha G KapnadakDepartment of Medicine, University of Washington, Seattle, WA, USA.
Mara R HoblerDepartment of Medicine, University of Washington, Seattle, WA, USA.
Kathleen J RamosDepartment of Medicine, University of Washington, Seattle, WA, USA. Electronic address: ramoskj@uw.edu.

Funding

University of Washington Biomedical Informatics and Data Science Research Training ProgramT15LM007442 · NLM · UNIVERSITY OF WASHINGTON · PI JOHN H. GENNARI, Andrea L. Hartzler · 2002 to 2026
$19.6M
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
Predicting survival and planning for lung transplantation in severe cystic fibrosisK23HL138154 · NHLBI · UNIVERSITY OF WASHINGTON · PI RAMOS, KATHLEEN JESSICA · 2017 to 2021
$947k
Evaluation and Pilot Testing of a Decision Support Tool for Lung Transplant in People Living with Cystic FibrosisR03HL158728 · NHLBI · UNIVERSITY OF WASHINGTON · PI RAMOS, KATHLEEN JESSICA · 2021 to 2022
$156k
NHLBI NIH HHS K23 HL138154NHLBI NIH HHS R03 HL158728NINR NIH HHS R01 NR020470NLM NIH HHS T15 LM007442
6 · The paper itself

Abstract

objectivesCystic fibrosis (CF) causes progressive respiratory disease and premature death. Lung transplantation (LTx) is an important treatment consideration for people with CF (PwCF). Among PwCF, does preparedness for LTx and knowledge about LTx improve by reading personal narratives from CF LTx recipients ("CF Stories")?

methodsAdults with CF were recruited and presented with online CF Stories. Pre- and post-intervention questionnaires assessed LTx preparedness, knowledge, and decisional conflict. Deductive thematic analysis of study visits was conducted.

resultsTwenty-five participants were included. Pre-intervention, 24 % (6/25) reported feeling "very prepared" to discuss LTx. Among the remaining 19, preparedness improved post-intervention for 74 % (n = 14, 95 % CI: 51-88 %), with 42 % (n = 8, 95 % CI: 23-64 %) transitioning to feeling "very prepared." Baseline transplant knowledge was high (100 % questions correct) among 48 % (12/25) of participants; among the remaining 13, 92 % (n = 12, 95 % CI: 67-99 %) scored 100 % post-intervention. Decisional conflict improved for 67 % of participants (16/24), with a mean individual Decisional Conflict Scale change of -9.4 (95 % CI: -2.8, -15.9; p = 0.01). Thematic analysis revealed that participants valued practical LTx insights and relatable stories, identifying key medical information for LTx discussions.

conclusionsCF Stories improved knowledge and preparedness for LTx discussions. PRACTICE IMPLICATIONS: Personal narratives could enhance preparedness for LTx discussions and decision-making for PwCF.

Indexed as

Cystic FibrosisDecision MakingHealth Knowledge, Attitudes, PracticeLung TransplantationNarrationPatient Education as TopicPersonal Narratives as TopicAdultFemaleHumansMaleMiddle AgedSurveys and QuestionnairesCFPatient storiesShared decision-making

Identifiers

PMID40347548
PMCPMC12178180

What OpenQuestion holds

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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.