Evidence map›Paper›PMID 39091508›Full record

ArticleTherapeutic advances in chronic disease2024

The impact of elexacaftor/tezacaftor/ivacaftor on cystic fibrosis health-related quality of life and decision-making about daily treatment regimens: a mixed methods exploratory study.

Melissa Basile, Jennifer Polo, Katherine Henthorne, Joan DeCelie-Germana, Susan Galvin, Janice Wang

Abstract read
In one paragraph

Article in Therapeutic advances in chronic disease, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Trial
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  5. 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

6 authors.

Melissa BasileInstitute of Health System Science, Feinstein Institutes for Medical Research, Northwell Health, 600 Community Drive, Suite 403, Great Neck, NY 11021, USA.ORCID https://orcid.org/0000-0003-1395-2927
Jennifer PoloPrevention Program, Institute of Health System Science, Feinstein Institutes for Medical Research, Great Neck, NY, USA.
Katherine HenthorneAdult Pulmonary Medicine and Cystic Fibrosis Center, Northwell Health, Great Neck, NY, USA.
Joan DeCelie-GermanaDivision of Pediatric Pulmonary and Cystic Fibrosis, The Steven and Alexandra Cohen Children's Medical Center, New Hyde Park, NY, USA.
Susan GalvinCystic Fibrosis Center and Pediatric Pulmonary Medicine, Cohen Children's Medical Center of Northwell Health System, New Hyde Park, NY, USA.
Janice WangDivision of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine, Northwell Health Adult Cystic Fibrosis Center, Zucker School of Medicine at Hofstra/Northwell, Great Neck, NY, USA.

Funding

Factors for poor adherence among adults with Cystic FibrosisR03HS026970 · AHRQ · FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH · PI BASILE, MELISSA · 2020 to 2021
$100k
AHRQ HHS R03 HS026970
6 · The paper itself

Abstract

Background: Elexacaftor/tezacaftor/ivacaftor (ETI) has reduced many symptoms of cystic fibrosis (CF). Objectives: We sought to identify the impact of ETI on both symptoms and treatment decisions among adults with CF. Design: Participants were enrolled in a cross-sectional study. Surveys were sent Methods: We assessed Cystic Fibrosis Questionnaire-Revised (CFQ-R) subscales for physical, respiratory, emotion, and treatment, and analyzed semistructured interviews covering CF treatment regimens and daily living. Quantitative and qualitative results were analyzed separately and via a mixed-methods convergence coding matrix. Results: Twenty-four adults with CF taking ETI were included. CFQ-R subscale scores (mean scores/standard deviation) were physical (82.1/22.8), respiratory (83.7/11.2), emotion (65.3/14.2), and treatment (57.5/20.1). Three themes about decision-making for non-ETI-treatments emerged: (1) How I'm feeling, (2) Not noticing a difference, and (3) Uncertainty about long-term impact of modifying treatment regimens, and we found participants weighed each of these factors in their treatment decisions. Key findings from mixed-methods analysis show that among individuals experiencing higher CFQ-R scores for physical and respiratory compared to emotion and treatment, there were statements indicating that while those participants were experiencing better physical health, many continued their burdensome treatment regimens. Conclusion: With little long-term data on the impact of reducing non-ETI treatments, participants weighed how they were feeling, treatment efficacy beliefs, and risk tolerance when making treatment decisions.

Indexed as

adherence medicationcystic fibrosishealth-related quality of lifelife qualitynonadherence medicationpatients with cystic fibrosisquality of lifesymptom burden

Identifiers

PMID39091508
PMCPMC11292704

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

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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.