P249 Comparison of depression, burnout, caregiver burden and parent-child attitudes in cystic fibrosis and primary ciliary dyskinesia in children's mothers

Eyüboğlu, Tuğba Şişmanlar; Gürsoy, Tuğba Ramaslı; Aslan, Ayse Tana; Emiralioğlu, Nagehan; Pekcan, Sevgi; Buyukkaya, Z.; Hangül, Melih; Köse, Mehmet; Soysal, Şebnem; Budakoğlu, Işıl İrem

doi:10.1016/s1569-1993(18)30544-7

Cited by 2 publications

(3 citation statements)

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“…One study compared the ZBS scores of CF caregivers with those of patients with primary ciliary dyskinesia and found that CF caregivers reported a greater burden score. 33…”

Section: Resultsmentioning

confidence: 99%

“…One study compared the ZBS scores of CF caregivers with those of patients with primary ciliary dyskinesia and found that CF caregivers reported a greater burden score. 33 Caregiver burden was shown to be worse in periods of patient hospitalization for disease exacerbation, with caregivers reporting statistically significantly lower CHQ-PF28 parental impacttime scores during hospitalization versus afterwards (49.2 versus 61.0; p = 0.004). 9 Nine studies utilized preference-based measures to determine the QoL of the caregivers of people with CF.…”

Section: Humanistic Caregiver Burdenmentioning

confidence: 95%

“…Ten studies included in the review reported data on subjective caregiver burden. 9,17,21,23,24,[29][30][31][32][33] Five studies utilized the Zarit Burden Interview (ZBI), which produces a Zarit Burden Scale (ZBS) score, 17,24,30,31,33 of which three were reporting results from the BURQOL-RD European project. The Caregiver Burden General Strain Index (CB-GSI) eight items, 21 The Child Health Questionnaire-Parent Form 28 (CHQ-PF28), 9 an informal questionnaire, 23 the treatment burden subscale of the Cystic Fibrosis Questionnaire-Revised, 32 and an undisclosed measurement tool were each used in one study.…”

Section: Humanistic Caregiver Burdenmentioning

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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“…One study compared the ZBS scores of CF caregivers with those of patients with primary ciliary dyskinesia and found that CF caregivers reported a greater burden score. 33…”

Section: Resultsmentioning

confidence: 99%

Section: Humanistic Caregiver Burdenmentioning

confidence: 95%