Symptoms and quality of life in adults with cystic fibrosis: A cross-sectional analysis of the InSPIRe:CF trial.

Autor: Smirnova N; Department of Medicine, Division of Pulmonary, Allergy, Critical Care, and Sleep Medicine, Emory University, Atlanta, GA, United States., Lowers J; Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University, Atlanta, GA, United States., Cammarata-Mouchtouris A; Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University, Atlanta, GA, United States; Department of Pediatrics, Emory University, Atlanta, GA, United States., Dellon EP; Department of Pediatrics, UNC Chapel Hill, Chapel Hill, NC, United States., Fitzpatrick A; Department of Pediatrics, Emory University, Atlanta, GA, United States., Kavalieratos D; Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University, Atlanta, GA, United States; Rollins School of Public Health, Emory University, Atlanta, GA, United States; Department of Pediatrics, Emory University, Atlanta, GA, United States. Electronic address: dkavalieratos@emory.edu.
Jazyk: angličtina
Zdroj: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2024 Sep; Vol. 23 (5), pp. 831-835. Date of Electronic Publication: 2024 Mar 10.
DOI: 10.1016/j.jcf.2024.03.005
Abstrakt: Background: People living with cystic fibrosis (CF) experience a high symptom burden. Due to the changing landscape of CF in the era of modulator therapy, we sought to examine the epidemiology of symptoms and their association with quality of life, to help CF clinicians improve symptom screening in clinic.
Methods: Using baseline data from a trial of specialist palliative care in adults with CF, we examined symptom prevalence, distress, and association with quality of life (measured with the Functional Assessment of Chronic Illness Therapy Total Score).
Results: Among 262 participants, median age was 33, and 78% were on modulator therapy. The most common symptoms were lack of energy (n = 194, 74%) and cough (190, 73%), whereas the most distressing were difficulty sleeping (range 0-4, mean 2.19, SD 1.15) and pain (mean 2.04, SD 1.1). The symptoms that impaired quality of life the most were extrapulmonary: lack of energy (average quality of life score -29.8, 95% CI -36.8 to -22.8), feeling sad (-29.8, 95% CI -35.6 to -23.9) and worrying (-28.7, 95% CI -34.9 to -22.5).
Conclusions: The symptoms that were associated with the lowest quality of life were extrapulmonary. CF clinicians may consider screening for common symptoms that affect quality of life the most (lack of energy, worrying, difficulty sleeping, feeling irritable, pain, and shortness of breath). These symptoms may identify people living with CF who are most at risk for a decreased quality of life and may benefit from additional support.
Competing Interests: Declaration of competing interest Dio Kavalieratos, Elisabeth Dellon, and Alexandre Cammarata-Mouchtouris have research funding from the Cystic Fibrosis Foundation (CFF). The remaining author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
(Copyright © 2024. Published by Elsevier B.V.)
Databáze: MEDLINE
Externí odkaz: