ArticleChest2022
Treatment Preference Among People With Cystic Fibrosis: The Importance of Reducing Treatment Burden.
Article in Chest, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- The Evolving Landscape of Discrete Choice Experiments in Health Economics: A Systematic Review.PharmacoEconomics · 2025Pooled it
- Impact of Discontinuing Both Hypertonic Saline and Dornase Alfa after Elexacaftor-Tezacaftor-Ivacaftor in Cystic Fibrosis.Annals of the American Thoracic Society · 2024Trial
- Discontinuation versus continuation of hypertonic saline or dornase alfa in modulator treated people with cystic fibrosis (SIMPLIFY): results from two parallel, multicentre, open-label, randomised, controlled, non-inferiority trials.The Lancet. Respiratory medicine · 2023Trial
- Meaningful Criteria to Persons Living With Cystic Fibrosis and Their Healthcare Providers in Helping Determine Adjustments to Routine Clinical Follow-Up.Pediatric pulmonology · 2026Article
- Elexacaftor/tezacaftor/ivacaftor is associated with long-term reduction in use of chronic respiratory therapies in cystic fibrosis.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2026Observational
- Determinants of health-related quality of life in adults with cystic fibrosis: the role of selected sociodemographic and treatment-related factors.Orphanet journal of rare diseases · 2026Article
- Real-World Effectiveness of Elexacaftor/Tezacaftor/Ivacaftor in Cystic Fibrosis: A 24-Month Italian National Registry Study.Journal of clinical medicine · 2026Article
- Health State Utilities Associated With Treatment Burden in Cystic Fibrosis: A Patient Valuation Study.CHEST pulmonary · 2025Article
- Pulmonary Delivery of Antibiotics to the Lungs: Current State and Future Prospects.Pharmaceutics · 2025Review
- "I eat chocolate milk for dinner because we just have nothing in our fridge": The invisible burden and dire consequences of food insecurity for people with cystic fibrosis in the United States.Pediatric pulmonology · 2024Article
- Using Real-World Research to Study the Impact of Chronic Daily Therapy Discontinuation in Cystic Fibrosis: The Home-Reported Outcomes in Cystic Fibrosis 2 Study Design.CHEST pulmonary · 2024Article
- Considerations for the use of inhaled antibiotics forBMJ open respiratory research · 2024Article
- The cost of simplifying treatments for cystic fibrosis: Implications of the SIMPLIFY trial.Journal of managed care & specialty pharmacy · 2024Article
- Predictors of frequency of CF care in the US Cystic Fibrosis Foundation Patient Registry.PloS one · 2024Observational
- Real-world effectiveness of airway clearance techniques in children with cystic fibrosis.The European respiratory journal · 2023Observational
- Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.Patient preference and adherence · 2023Article
- Exploring the impact of elexacaftor-tezacaftor-ivacaftor treatment on opinions regarding airway clearance techniques and nebulisers: TEMPO a qualitative study in children with cystic fibrosis, their families and healthcare professionals.BMJ open respiratory research · 2022Article
- Patient engagement in the development of CF-CBT: A cystic fibrosis-specific cognitive-behavioral intervention for adults.Frontiers in psychology · 2022Article
- Perceived burden of respiratory physiotherapy in people with cystic fibrosis taking elexacaftor-tezacaftor-ivacaftor combination: a 1-year observational study.Therapeutic advances in respiratory diseaseObservational
Corrections and comments
- Commented on by
- Commented on byResponse.2023
Authors and funding
8 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere is a growing consensus that the perspective of the patient should be considered in the evaluation of novel interventions. RESEARCH QUESTION: What treatment outcomes matter to people with cystic fibrosis (CF), and what trade-offs would they make to realize these outcomes? STUDY DESIGN AND
methodsAdults attending a specialist CF center were invited to complete an online discrete choice experiment (DCE). The DCE required participants to evaluate hypothetical CF treatment profiles, defined by impact on lung function, pulmonary exacerbations, abdominal symptoms, life expectancy, quality of life, inhaled medicine usage, and physiotherapy requirement. Choice data were analyzed, using multinomial logit and latent class models.
resultsOne hundred and three people with CF completed the survey (median age, 35 years; range, 18-76 years); 52% were female; mean FEV
interpretationThe relative importance of treatment burden to people with CF, compared with life expectancy and lung function, suggests it should be routinely captured in clinical trials as an important secondary outcome measure. When considering the patient perspective, it is important that decision-makers recognize that the values of people with CF are not homogeneous.
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Registered trials
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.