360 Quality of life of parents with children affected by cystic fibrosis

Prochenka, M.; Borawska-Kowalczyk, U.; Zawadzka, Dominika; Oitarzewski, M.; Sands, Dorota

doi:10.1016/s1569-1993(17)30697-5

Cited by 3 publications

(1 citation statement)

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“… 17 , 19 , 24 , 25 , 30 , 37 – 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. 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.…”

Section: Resultsmentioning

confidence: 99%

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%

Caregiver burden in cystic fibrosis: a systematic literature review

Daly

Ruane

O'Reilly

et al. 2022

Ther Adv Respir Dis

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A Partial Picture, Without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers

Nesser

Wotring

et al. 2023

American Journal of Health Education

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Wybrane wskaźniki statusu socjoekonomicznego rodziców dzieci z mukowiscydozą

Zubrzycka

2018

lrp

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<p>W artykule zaprezentowano wyniki badań własnych dotyczących wybranych wskaźników statusu socjoekonomicznego 130 rodziców dzieci z mukowiscydozą (Cystic Fibrosis – CF) – 100 kobiet i 30 mężczyzn i równolicznej grupy rodziców dzieci bez CF. Zastosowano metodę sondażu diagnostycznego wraz z kwestionariuszem ankiety. Ustalono, że matki i ojcowie dzieci z CF nie różnią się istotnie od rodziców dzieci bez CF w zakresie wykształcenia i deklarowanego miesięcznego dochodu przypadającego na jednego członka rodziny (u matek zanotowano różnicę na poziomie zbliżonym do istotności). Różnią się jednak znacząco w zakresie takich wskaźników SES, jak: aktywność zawodowa i subiektywna ocena sytuacji materialnej. Średni miesięczny koszt leczenia dziecka z mukowiscydozą w opinii jego rodziców wynosi 1060,55 zł. Środki te przeznaczane są głównie na farmakoterapię, transport do placówek specjalistycznych oraz opłacenie prywatnych usług medycznych. Ujawniono, że tylko ok. 1/4 badanych jest w stanie samodzielnie pokryć wymienione koszty rehabilitacji. Postulowane jest zatem podjęcie pogłębionych badań nad statusem socjoekonomicznym rodziców dzieci z CF w celu opracowania adekwatnych programów wsparcia społecznego.</p>

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360 Quality of life of parents with children affected by cystic fibrosis

Cited by 3 publications

References 0 publications

Caregiver burden in cystic fibrosis: a systematic literature review

Caregiver burden in cystic fibrosis: a systematic literature review

A Partial Picture, Without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers

Wybrane wskaźniki statusu socjoekonomicznego rodziców dzieci z mukowiscydozą

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