Abstract
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.
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.
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).
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.
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.
- Content Type Journal Article
- Pages 1-13
- DOI 10.1007/s11136-011-9991-7
- Authors
- Marten J. Poley, Department of Pediatric Surgery, Sophia Children’s Hospital, Erasmus MC, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands
- Werner B. F. Brouwer, Institute for Medical Technology Assessment (iMTA), Erasmus University Rotterdam, Rotterdam, The Netherlands
- N. Job A. van Exel, Institute for Medical Technology Assessment (iMTA), Erasmus University Rotterdam, Rotterdam, The Netherlands
- Dick Tibboel, Department of Pediatric Surgery, Sophia Children’s Hospital, Erasmus MC, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands
- Journal Quality of Life Research
- Online ISSN 1573-2649
- Print ISSN 0962-9343