SynthesisTherapeutic advances in respiratory disease
Caregiver burden in cystic fibrosis: a systematic literature review.
Synthesis in Therapeutic advances in respiratory disease. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 4 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
21 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Systematic Review of Nasal Endoscopy Scores in Cystic Fibrosis Patients Treated With Cystic Fibrosis Transmembrane Conductance Regulator Modulators.Pediatric pulmonology · 2026Pooled it
- The Burden of Informal Caregiving for Adults with Musculoskeletal Conditions: A Systematic Review.PharmacoEconomics · 2025Pooled it
- Ivacaftor-tezacaftor-elexacaftor, tezacaftor-ivacaftor and lumacaftor-ivacaftor for treating cystic fibrosis: a systematic review and economic evaluation.Health technology assessment (Winchester, England) · 2025Pooled it
- Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs.Orphanet journal of rare diseases · 2022Pooled it
- Balancing hope and uncertainty: family perspectives on lung transplantation in cystic fibrosis - a qualitative study.International journal of qualitative studies on health and well-being · 2026Article
- Mental health, sleep, and quality of life following CFTR modulator therapy: a longitudinal study of children with cystic fibrosis and caregivers.European journal of pediatrics · 2026Observational
- Caregiver Mental Health and Its Relation to Child and Adolescent Mental and Behavioral Health in the Era of Highly Effective Modulator Therapy for Cystic Fibrosis.Pediatric pulmonology · 2026Article
- The effect of tele-interventions on family caregiver burden: a systematic review and meta-analysis.BMC nursing · 2026Article
- Mental Health in Cystic Fibrosis in the Modulator Era: Epidemiology, Prognostic Significance, and Therapeutic Implications.Journal of clinical medicine · 2026Review
- The clinical, psychosocial, and economic burden of cystic fibrosis lung disease in the era of CFTR modulator therapy.Annals of the American Thoracic Society · 2026Review
- Effect of caregiver burden on the quality of life of informal caregivers of people with cystic fibrosis in the United Kingdom: a cross-sectional study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Mapping Perceived Impact, Facilitators and Barriers of Cystic Fibrosis Management in Children and Adolescents: A Qualitative Study From the Parents' Perspective.Scandinavian journal of caring sciences · 2025Article
- Cost-Effectiveness Analysis Methods Used in Evaluations of Treatment for Cystic Fibrosis: A Scoping Review.PharmacoEconomics · 2025Article
- Qualitative study exploring the views and perceptions of parents/carers of young children with CF regarding the introduction of CFTR modulator therapy (The REVEAL study; PaRents pErspectiVEs of KAftrio in chiLdren aged 2-5).BMJ open respiratory research · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- A multicenter evaluation of the time and travel burden on families with children treated for early-onset scoliosis.Spine deformity · 2024Article
- Socioeconomic burden of cystic fibrosis in Canada.BMJ open respiratory research · 2024Article
- Aiming to Improve Equity in Pulmonary Health: Cystic Fibrosis.Clinics in chest medicine · 2023Review
- Health-Related Quality of Life in Adults with Cystic Fibrosis: Familial, Occupational, Social, and Mental Health Predictors.Healthcare (Basel, Switzerland) · 2022Article
- Bronchoalveolar Lavage Fluid Analysis in Severe COVID-19: Insights Into Cellular and Microbiological Characteristics.Acute medicine & surgeryArticle
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCystic fibrosis (CF) affects more than 80,000 people worldwide, having a considerable impact on the quality of life of patients and their caregivers, who assist patients with time-consuming treatment regimens. Despite this, a review of the available evidence has not been previously undertaken. This systematic literature review aimed to identify the humanistic and economic burdens of CF on caregivers.
methodsA systematic literature review was conducted, in accordance with Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines. Publications reporting outcomes for the caregivers of people with CF, including utility data, health status, and occupational impact, were reviewed. Sources searched were Embase (OvidSP), Medline (PubMed), the Cochrane Database of Systematic Reviews, and the Epistemonikos database, from 2010 to March 2020. A subsequent search with updated terms identified articles up to April 2020. Electronic searches were supplemented by hand searches to capture all relevant literature.
resultsA total of 889 articles reporting humanistic burden and 310 reporting economic burden were identified. Following full-text screening by two independent reviewers, 72 articles were included in the review, of which 65 and 17 reported data on humanistic and economic burdens, respectively, with 10 reporting on both. The reviewed literature covered several outcomes and identified multiple key findings: greater disease severity is associated with the reporting of greater caregiver burden and lower utility scores of quality of life; reduced patient lung function is associated with increased caregiver depression and anxiety; and caregiving causes significant occupational impact, with pulmonary exacerbations decreasing caregiver productivity by up to a third compared with the patient being in a 'well' state.
conclusionFindings from this systematic literature review highlight the substantial humanistic and economic burdens borne by the caregivers of people with CF. Future research would help to further inform on the link between disease severity and caregiver burden.
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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.