English conference proceeding
Theunissen,
N.C.M., Vogels, A.G.C., Verrips, G.H., Koopman, H.M., Verloove-Vanhorick,
S.P., Kamphuis, R.P., & Wit, J.M. (1996). The proxy problem:
parents and children's view on children's HrQOL. ISOQOL: 3rd international
conference for quality of life research, Manilla, Philipines, October 24-27. Quality of Life Research, Vol. 6, No. 5 (Jul., 1997), pp. 429-430.
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Abstract
The aim of the current study was to examine the agreement between self reports and proxy reports of health related quality of life (HRQoL ) in children. To do so we used data on children’s HRQoL in a normal population measured by the TACQOL-Parent Form (PF) and the TACQOL-Child Form (CF). Both instruments proved to be satisfying as far as internal consistency and the internal and external validity are concerned. The instruments define HRQoL as the affective evaluation of Health Status. Both TACQOL-Forms contain five 8-item Health Status based scales (physical complaints (Body), motor functioning (Motor), autonomy (Self), cognitive functioning (Cognition) and social functioning (Social)). A Health Status problem, if present, leads to a question about the emotional response. These five scales are followed by two scales assessing the presence of positive and negative emotions in general (EMOPOS and EMONEG). The TACQOL-PF and TACQOL-CF were supplemented with questions assessing -among others- sex and age, chronic illnesses, and illnesses of the child during the last few weeks.Data was collected by means of a survey among (parents of) 2520 children, between 6 and 11 year. Twelve regional departments for Preventive Youth Health Care all over the Netherlands drew a sample of 210 children, half boy, half girl, equally divided over three consecutive age groups. Parents of age group 6 to 7 received only the TACQOL-PF and are therefore excluded of this study. After three weeks a single reminder was sent if necessary. Data collection is not yet fully completed. The response rate by now is already 67%.
The main purpose of this study is to answer the following questions:
1 Is proxy by parents an adequate alternative for the self reports of children? (a) How do the TACQOL-PF relate to the TACQOL-CF for each child-parent pair? The analyses involved computation of correlations and T-Tests. (b) What is the influence of the factors chronic illness and reported health on the relationship between parent and child? The analyses involved computation of correlations.
2. Is the proxy problem influenced by the way the HRQoL is defined? More specifically: what is the difference between the TACQOL scales and more commonly used Functional problems scales (which lack the affective evaluation) in estimating the agreement between child and parent. The analyses for this involved recoding of the five TACQOL Health Status scales in two different ways: The TACQOL method: a combination of Health Status problems and emotional response scores; and the Functional problems method: the Health Status scores without emotional response. The analyses involved computation of correlations and T-Tests.
The results concerning question 1: (a) The correlations between TACQOL-PF and TACQOL-CF on the five Health Status scales are all significant, although the height of the correlation indicates a certain discrepancy between parent and child. They vary from r=.47 (Self) to r=.61 (Body). Also significant but moderate are EMOPOS (r=.45) and EMONEG (r=.53). T-Tests show that the means of de children's scores are significant (p<.05) higher than the mean of the parents for Body, Motor and Self. Compared to the children’s output, the parents underestimate their children's problems on the HRQoL scales with a physical character. On EMOPOS the parents scores are significant higher; they overestimate children's positive feelings. The scales Cognition, Social and EMONEG do not differ significant. For these scales the estimations of the proxy seems to be adequate, although correlations indicates some discrepancy with the children’s scores.
(b) Correlations for children with a chronic illness and their parents are somewhat higher (r=.41 to .65) than for children without a chronic illness and their parents (r=.39 to .58). Reported illness in the last few weeks shows an opposite effect on the correlations (with temporary illness r= .43 to .58 and without temporary illness r= .46 to .61) Because of the temporary illness, the parents tend to overestimate the HRQoL and because of chronic illnesses the parent is probably more aware of the child’s HRQoL.
The results concerning question 2: The Functional problems method gives correlations that are similar with the correlations computed with the TACQOL method: between r=.47 (Self) and r=.61 (Body). They are significant but indicates some discrepancy. T-Tests indicate higher means (= lower HRQoL) for children on Body and Motor. On Cognition, Self and Social parents means are as high as the children's. The problems on the Self scale are not underestimated by the parents as opposed to the T-Tests results on the TACQOL method. The above indicates that the way HRQoL is defined by the TACQOL method (the affective evaluation of Health Status) did not have an influence on the measurement of proxy.
In conclusion, it can be stated that parents have more or less insight in the HRQoL of their children, although there is some discrepancy and some overestimation. In future we may need discussion about which HRQoL measurement to use on which occasion: The self report of the child or the proxy by parent.
