Cystic Fibrosis Disparities; A Tertiary Center Experience

Fanous, Hani; Klechtermans, J.; Cárdenas, Mónica; Bedoya, Mariana; Benyamin, Minas; Colin, A.R.

doi:10.1164/ajrccm-conference.2019.199.1_meetingabstracts.a1913

Cited by 1 publication

(2 citation statements)

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“…Five studies reported data on the association between patient lung function and caregiver well-being. 31 , 55 , 76 , 85 , 86 Fanous et al 85 noted that Hispanic caregivers reported greater anxiety than non-Hispanic caregivers, and that this was associated with worse patient lung function (Mean GAD-7: 6.88 versus 3.54; p = 0.05). Keniş Coşkun et al 31 reported a correlation between lower patient forced expiratory volume in 1 s (FEV 1 ) and greater subjective caregiver burden in their caregivers.…”

Section: Resultsmentioning

confidence: 99%

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Caregiver burden in cystic fibrosis: a systematic literature review

Daly

Ruane

O'Reilly

et al. 2022

Ther Adv Respir Dis

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Background: Cystic 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. Methods: A 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. Results: A 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. Conclusion: Findings 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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Section: Resultsmentioning

confidence: 99%

“…Additional data on lung function 55, 76,85,88 and its association with caregiver well-being and on the well-being of healthy siblings 92 are presented in Supplementary Tables S7 and S8, respectively.…”

Section: Humanistic Caregiver Burdenmentioning

confidence: 99%