Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies

Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies

Purpose Relatively few attempts to measure the effects on the health-related quality of life (HRQoL) of informal caregivers within the context of economic evaluations have been reported. This paper is an exploratory attempt to find suitable methods to assess caregivers' HRQoL, using a populatio...

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Veröffentlicht in:Quality of Life Research. - Springer Science + Business Media. - 21(2012), 5, Seite 849-861
1. Verfasser: Poley, Marten J. (VerfasserIn)
Weitere Verfasser: Brouwer, Werner B. F., van Exel, N. Job A., Tibboel, Dick
Format: Online-Aufsatz
Sprache:English
Veröffentlicht: 2012
Zugriff auf das übergeordnete Werk:Quality of Life Research
Schlagworte:Economics Behavioral sciences Health sciences Political science Social sciences
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100 1 |a Poley, Marten J.  |e verfasserin  |4 aut 
245 1 0 |a Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies 
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520 |a Purpose Relatively few attempts to measure the effects on the health-related quality of life (HRQoL) of informal caregivers within the context of economic evaluations have been reported. This paper is an exploratory attempt to find suitable methods to assess caregivers' HRQoL, using a population of parents of children with major congenital anomalies. Methods A total of 306 parents of children born with either congenital anorectal malformations (ARM) or congenital diaphragmatic hernia were surveyed. They rated their current HRQoL on the EQ-VAS. After that, they rated their HRQoL again on the assumption that someone would take over their caregiving activities completely and free of charge. Finally, the parents classified their HRQoL on the EQ-5D. The caregivers' scores on the EQ-VAS and the EQ-5D were compared with scores elicited in the general population. Results Most parents indicated that their HRQoL would not change if someone else took on their caregiving activities. Some methodological issues may have influenced this outcome, such as difficulties in self-assessing HRQoL changes due to caregiving, process utility, protest answers, and difficulties in understanding the hypothetical question. The HRQoL of the parents was relatively low compared with population statistics, especially in the parents of children with ARM and in mothers. This can be illustrated by the difference between the mean EQ-5D score of the mothers aged 25-34 years of the children with ARM and that of the general population (0.83 vs. 0.93; P = 0.002). Conclusions Significant HRQoL differences exist between parents caring for children with congenital anomalies and the general population. It would be useful to further improve our understanding of the HRQoL impact of informal caregiving, separating ' caregiving effects' from ' family effects', and distinguishing parent-child relationships from other caregiving situations. This study underlines the importance of considering caregivers, also in the context of economic evaluations. It indicates that general HRQoL measures, as used in patients, may be able to detect HRQoL effects in caregivers, which facilitates the incorporation in common economic evaluations of HRQoL effects in carers. Analysts and policy makers should be aware that if HRQoL improvement is an important aim, they should register HRQoL changes not only in patients but also in their caregivers. 
540 |a © 2012 Springer 
650 4 |a Economics  |x Economic disciplines  |x Labor economics  |x Employment  |x Occupations  |x Medical personnel  |x Caregivers 
650 4 |a Behavioral sciences  |x Sociology  |x Human societies  |x Social institutions  |x Families  |x Family members  |x Parents 
650 4 |a Health sciences  |x Health and wellness  |x Health status  |x Quality of life 
650 4 |a Behavioral sciences  |x Sociology  |x Human societies  |x Social institutions  |x Families  |x Parenting  |x Child care 
650 4 |a Health sciences  |x Medical conditions  |x Diseases  |x Musculoskeletal diseases  |x Joint diseases  |x Congenital hip dislocation 
650 4 |a Political science  |x Government  |x Governance  |x Government budgets  |x Government spending  |x Government health care finance  |x Federal health insurance plans  |x Medicaid  |x Child health services 
650 4 |a Social sciences  |x Population studies  |x Human populations  |x Persons  |x Children 
650 4 |a Health sciences  |x Medical specialties  |x Pediatrics 
650 4 |a Health sciences  |x Medical conditions  |x Disorders  |x Physical disorders  |x Congenital anomalies 
650 4 |a Health sciences  |x Medical conditions  |x Symptoms  |x Physical symptoms  |x Hernia  |x Diaphragmatic hernia  |x CLINICAL AND POLICY APPLICATIONS 
655 4 |a research-article 
700 1 |a Brouwer, Werner B. F.  |e verfasserin  |4 aut 
700 1 |a van Exel, N. Job A.  |e verfasserin  |4 aut 
700 1 |a Tibboel, Dick  |e verfasserin  |4 aut 
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