Evidence map›Paper›PMID 42500837›Full record

ArticleTherapeutic advances in respiratory disease

Exploring the lived experiences of individuals with cystic fibrosis after the implementation of elexacaftor/tezacaftor/ivacaftor for treatment.

Alyssa Riggle, Annelise Page, Erica Roesch, Marsha Michie, Rebecca Darrah

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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. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

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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

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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

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

5 authors.

Alyssa RiggleSchool of Medicine, Case Western Reserve University, Cleveland, OH 44106-4915, USA.ORCID 0009-0008-5448-1213
Annelise PageTriHealth Precision Medicine Institute, Montgomery, OH, USA.
Erica RoeschDepartment of Pediatric Pulmonology, University Hospitals Rainbow Babies and Children's Hospital, Cleveland, OH, USA.
Marsha MichieDepartment of Bioethics, Case Western Reserve University, Cleveland, OH, USA.
Rebecca DarrahDepartment of Genetics and Genome Sciences, Case Western Reserve University, Cleveland, OH, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundCFTR modulators are a class of medications prescribed to people with cystic fibrosis (pwCF) who have certain genetic mutations. In 2019, elexacaftor/tezacaftor/ivacaftor (ETI) was approved by the FDA and led to significant health improvements for pwCF. Despite ETI showing significant health improvements compared to prior modulators, little is known about how ETI impacts the lived experience of pwCF.

objectivesThis study explored how the implementation of ETI in cystic fibrosis treatment has impacted the lived experience of pwCF and what additional resources healthcare providers should be offering to their patients.

designWe conducted a qualitative study that recruited pwCF from an adult CF center who were over the age of 18 and had been on ETI for at least a year.

methodsWe conducted and recorded semi-structured interviews with participants over the Zoom platform. Dedoose was used to code the data and themes were constructed using inductive coding rooted in grounded theory.

resultsFour themes were constructed from the data in this study: (1) "transformation in health" refers to the change in physical health the participants have noticed since starting ETI, (2) "future planning and opportunities" highlights new opportunities becoming available and a new desire to plan for the future, (3) "impact on relationships" describes how participants felt their relationships with their partner, family, and care teams, were impacted by ETI, (4)"new worries and struggles" describes new struggles and concerns that participants have faced.

conclusionThe data from this study provide evidence that ETI has not only impacted pwCF on a physical level, but may also have an impact on relationships, mental health, and future planning. It also highlights the need for additional resources that CF care teams should be providing to their patients.

Indexed as

AminophenolsBenzodioxolesChloride Channel AgonistsCystic FibrosisIndolesPyridinesPyrrolidinesQuinolonesAdultCystic Fibrosis Transmembrane Conductance RegulatorDrug CombinationsFemaleHumansInterviews as TopicMalePyrazolesAminophenolsBenzodioxolesChloride Channel AgonistsCystic Fibrosis Transmembrane Conductance RegulatorDrug Combinationselexacaftor, ivacaftor, tezacaftor drug combinationIndolesPyrazolesPyridinesPyrrolidinesQuinolinesQuinolonesCFTR modulatorscystic fibrosiselexacaftor/tezacaftor/ivacaftor (ETI) lived experiencefuture planninghealthcare needsmental healthphysical healthrelationshipsself-identityTrikafta®

Identifiers

PMID42500837
PMCPMC13401658

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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.