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High treatment burden in adults with cystic fibrosis: Challenges to disease self-management
Open accessAbstract
Background More aggressive management of cystic fibrosis (CF), along with the use of new therapies, has led to increasing survival. Thus, the recommended daily treatment regimens for most CF adults are complex and time consuming. Methods In the Project on Adult Care in CF (PAC-CF), an ongoing longitudinal study of CF adults, we assessed self-reported daily treatment activities and perceived treatment burden as measured by the CF Questionnaire-Revised (CFQ-R), a disease-specific quality of life measure. Results Among the 204 respondents, the median number of daily therapies reported was 7 (IQR 5-9) and the mean reported time spent on treatment activities was 108 minutes per day (SD 58 minutes). Respondents reported a median of 3 inhaled and 3 oral therapies on the day prior to the survey. Only 49% reported performing airway clearance (ACT) on that day. There were no differences in the number of medications or the time to complete therapies based on gender, age or FEV1. The mean CFQ-R treatment burden domain score was 52.3 (SD 22.1), with no significant differences in the treatment burden based on age or FEV1. In a multivariable model controlling for age, gender, and FEV1, using 2 or more nebulized medications and performing ACT for ≥30 minutes were significantly associated with increased treatment burden. Conclusion The level of daily treatment activity is high for CF adults regardless of age or disease severity. Increasing number of nebulized therapies and increased ACT time, but not gender, age, or pulmonary function, is associated with higher perceived treatment burden. Efforts to assess the effects of high treatment burden on outcomes such as quality of life are warranted.
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“A minimum of one to three nebulised treatments per day are usually prescribed, depending on an individual's characteristics (Hoo 2016), with treatments taking an average of 41 minutes per day (Sawicki 2009).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Sawicki 2009
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“with one study finding the average adult with CF spends two hours per day on CF care (1).”
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Self-citation
Metadata
- Authors
- Sawicki, G. S., Sellers, D. E., & Robinson, W. M.
- Affiliations
- Boston Children's Hospital (US)
- Education Development Center (US)
- Corresponding author
- Sawicki, Gregory S.
- Venue
- Journal of Cystic Fibrosis
- Publisher
- Elsevier BV
- Published
- 2009-03
- Volume
- 8
- Issue
- 2
- Pages
- 91-96
- ISSN
- 1569-1993 (ISSN-L)
- PMC
- PMC2680350
- OpenAlex
- W1976264709
- Semantic Scholar
- 6f4fe4eb5aa680de9ed1e2a38ba023699f8c2d53
- Cited by
- 498
- References
- 15
- Citations by year
- 2026: 15 · 2025: 25 · 2024: 29 · 2023: 41 · 2022: 46 · 2021: 32 · 2020: 35 · 2019: 35 · 2018: 30 · 2017: 39 · 2016: 25 · 2015: 37 · 2014: 29 · 2013: 23 · 2012: 15
- FWCI
- 12.29
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Journal of Cystic Fibrosis (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Heart, Lung, and Blood Institute (R01 HL72938, R01HL072938)
- Topics
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Chronic Obstructive Pulmonary Disease (COPD) Research
- Keywords
- treatment burden, disease self-management, adults with cystic fibrosis, airway clearance, quality of life, lung function
- MeSH terms
- Adult, Age Factors, Cystic Fibrosis, Female, Humans, Longitudinal Studies, Male, Quality of Life, Surveys and Questionnaires, Respiratory Therapy, Self Care, Severity of Illness Index, Cost of Illness
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