359 An evaluation of quality of life and caregiver burden of mothers of young children with cystic fibrosis

Fitzgerald, C. P.; George, Sherly; Linnane, Barry; Fitzpatrick, P.

doi:10.1016/s1569-1993(17)30696-3

Cited by 2 publications

(3 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Three used the EQ-5D-5 L 17 , 24 , 30 and one the EQ-5D-3 L, 25 both of which generate a utility score from the participants’ scoring of five dimensions of health on a scale anchored at 0 (representing a state as bad as being dead) and 1 (representing full health), and a visual analog scale (VAS) score against which participants rate their health from 0 to 100, with 100 signifying the best imaginable health. EuroQol-5D Three studies used the Care Related Quality of Life Caregiving (CarerQol-7D) instrument, 19 , 38 , 39 which consists of seven items each relating to a specific aspect of caregiving and a VAS on which caregivers indicate their well-being in terms of happiness from 0 to 10, with greater scores indicating greater happiness. Unlike the EQ-5D, the CarerQol-7D instrument assesses care-related QoL specifically.…”

Section: Resultsmentioning

confidence: 99%

“…30 The three studies that used the CarerQol-7D all reported data from the Irish Comparative Outcomes Study in pediatric patients with CF. 19,38,39 In the initial combined analysis, mothers were found to have significantly lower utility scores than fathers (81.4 versus 87.4, respectively; p = 0.004) 38 and VAS scores were also significantly lower in mothers than in fathers (7.2 versus 7.79; p = 0.03). 38 However, the difference between mothers and fathers in median VAS score was not found to be statistically significant in a later publication of the complete results of the study (7.0 versus 8.0; p = 0.097).…”

Section: Humanistic Caregiver Burdenmentioning

confidence: 93%

“…9 Nine studies utilized preference-based measures to determine the QoL of the caregivers of people with CF. 17,19,24,25,30,[37][38][39] Of these, one used the Ulm Quality of Life Inventory for parents of chronically ill children, 37 which consists of questions on five dimensions of QoL, scored on a 5-point scale with high scores indicating a better QoL. 37 One used the World Health Organization Quality-of-Life Assessment-Abbreviated, 40 which consists of 26 questions, and is scored from 0 to 100, with 100 representing the best QoL.…”

Section: Humanistic Caregiver Burdenmentioning

confidence: 99%

See 2 more Smart Citations

Caregiver burden in cystic fibrosis: a systematic literature review

Daly

Ruane

O'Reilly

et al. 2022

Ther Adv Respir Dis

View full text Add to dashboard Cite

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.

show abstract