Trial reportChest2013
Longitudinal trends in health-related quality of life in adults with cystic fibrosis.
Trial report in Chest, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 3 of them syntheses 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
34 citing papers in PubMed, 3 syntheses or guidelines pooled it, 58 citations in OpenAlex.
- Evolution of body image across treatment eras: a systematic review in young people and adults living with cystic fibrosis.European respiratory review : an official journal of the European Respiratory Society · 2026Pooled it
- The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2021Pooled it
- Pooled it
- Trial
- The Impact of Personal-Level Social Networks on Treatment Adherence, Depression, Anxiety, and Perceived Stigma Among Adults with Cystic Fibrosis: An Egocentric Network Analysis.International journal of behavioral medicine · 2026Article
- From Pathophysiology to Treatment: Contemporary Approaches to CFRD in the Pediatric and Adolescent Population.Pediatric diabetes · 2026Review
- Comparative efficacy and safety of CFTR modulators for people with cystic fibrosis with phe508del mutation: a systematic review and bayesian network meta-analysis.EClinicalMedicine · 2025Article
- Interrelationships between diet quality and health-related quality of life in Irish adults living with cystic fibrosis.European journal of nutrition · 2025Article
- Improved quality of life in cystic fibrosis patients observed up to 36 months after starting Elexacaftor/Tezacaftor/Ivacaftor treatment.Journal of patient-reported outcomes · 2025Observational
- Functional Measures in Non-COPD Chronic Respiratory Diseases: A Systematic Review.Journal of clinical medicine · 2024Review
- Polish Cystic Fibrosis Patients' Health-Related Quality of Life and Its Influencing Factors: A Cross-Sectional, Single-Centre Study.Healthcare (Basel, Switzerland) · 2024Article
- 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.Therapeutic advances in chronic disease · 2024Article
- Long-Term Follow-Up of Health-Related Quality of Life and Short-Term Intervention with CFTR Modulator Therapy in Adults with Cystic Fibrosis: Evaluation of Changes over Several Years with or without 33 Weeks of CFTR Modulator Therapy.Healthcare (Basel, Switzerland) · 2023Article
- Addressing Symptom Burden and Palliative Care Needs in Cystic Fibrosis: A Narrative Review of the Literature.Life (Basel, Switzerland) · 2023Review
- Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences.Journal of patient experience · 2023Article
- ISPAD Clinical Practice Consensus Guidelines 2022: Management of cystic fibrosis-related diabetes in children and adolescents.Pediatric diabetes · 2022Article
- Health-Related Quality of Life in Adults with Cystic Fibrosis: Familial, Occupational, Social, and Mental Health Predictors.Healthcare (Basel, Switzerland) · 2022Article
- The role of palliative care in lung transplantation.Journal of thoracic disease · 2021Review
- Reciprocal Links Between Physical Health and Coping Among Adolescents With Cystic Fibrosis.Journal of pediatric psychology · 2021Article
- Impact ofJournal of clinical medicine · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundHealth-related quality-of-life (HRQOL) measures have been used as patient-reported outcomes in clinical trials in cystic fibrosis (CF), but there are limited data on HRQOL changes over time in adults with CF.
methodsThe Project on Adult Care in Cystic Fibrosis, a prospective, longitudinal panel study of 333 adults with CF at 10 CF centers in the United States, administered a disease-specific HRQOL measure, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), seven times over 21 months. The CFQ-R assesses both physical and psychosocial domains of health. Growth curve regression models were developed for each CFQ-R domain, adjusting for demographic and clinical characteristics.
resultsBetween 205 and 303 adults completed surveys (response rate, 70%-93%). Mean age at baseline was 33 years (range, 19-64 years); mean FEV1 % predicted was 59.8% (SD, 22%). Over the 21 months of follow-up, lung function, frequency of pulmonary exacerbations, and nutritional indices were associated with physical CFQ-R domain scores. There were no significant population trends over time in the physical domain scores; however, there were population time trends in three psychosocial domains: treatment burden (+8.9 points/y), emotional functioning (+3.2 points/y), and social functioning (-2.4 points/y). Individual variation in both physical and psychosocial subscales was seen over 21 months.
conclusionsIn a longitudinal multicenter population of adults with CF, clinical variables such as FEV1, exacerbation frequency, and weight were correlated with related CFQ-R subscales. For the population as a whole, the physical domains of CFQ-R, such as respiratory symptoms, were stable. In contrast, population changes in several psychosocial domains of CFQ-R suggest that differentiating between the physical and the psychosocial trajectories in health among adults with CF is critical in evaluating patient-reported outcomes.
Indexed as
Identifiers
What OpenQuestion holds
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.