Quality of life in preschool children born preterm.

The relationship of preterm birth to health-related quality of life (HRQoL) was examined for children aged 1 to 4 years. Three gestational age groups with a NICU history were selected, <32 weeks (n=65), 32 to 36 weeks (n=41), 237 weeks (n=54), and a reference group from the open population (n=50). The main instrument was the TNO-AZL Preschool Quality Of Life (TAPQOL) questionnaire, which was completed by the parents. In addition, other outcome measures obtained from parents or neonatologists were investigated. Children born <32 weeks had significantly lower HRQoL than the reference group in the scales for lungs, stomach, eating disorders, motor functioning, communication, and anxiety. Parental feelings towards the child were related to the child's HRQoL. We found differences between the neonatologists' and parents' perceptions of the children's situation, which can have clinical consequences (e.g. different opinions about what needed treatment). Neonatal intensive care after birth has HRQoL implications for all children, particularly in children born at <32 weeks of gestation.

Health status development in a cohort of preterm children.

OBJECTIVE: To determine the impact of preterm birth on health status (HS) development at the ages of 5 and 10 years in a cohort of children born before term. SAMPLE: Six hundred eighty-eight children, born in 1983 with a gestational age of <32 weeks and a birth weight of <1500 g. DESIGN: Prospectively collected HS variables, obtained from the parents, were analyzed in a longitudinal perspective by using principal component analyses. RESULTS: One third of the sample had minor to severe HS problems at both ages of measurement. One third had problems on one assessment only. The remainder of the sample had no HS problems at either age. The analyses grouped the HS variables into 3 combinations. Problems in basic functioning, such as mobility or speech, decreased with age. Negative moods substantially increased, and concentration problems increased slightly. Specifically at risk were preterm born children with handicaps, boys, and children who were small for gestational age. CONCLUSION: According to the parents, one third of the cohort had no HS problems at either age. The pattern of HS problems of the preterm born children changed between 5 and 10 years of age.

Development and psychometric evaluation of the TAPQOL: a health-related quality of life instrument for 1-5-year-old children.

The 43-item TNO-AZL Preschool Children Quality of Life (TAPQOL) questionnaire was developed to meet the need for a reliable and valid instrument for measuring parent's perceptions of health-related quality of life (HRQoL) in preschool children. HRQoL was defined as health status in 12 domains weighted by the impact of the health status problems on well-being. The aim of this study was to evaluate the psychometric performance of the TAPQOL. A sample of 121 parents of preterm children completed the TAPQOL questionnaire (response rate 88%) as well as 362 parents of children from the general population (response rate 60%). On the base of Cronbach's alpha, item-rest correlation, and principal component analysis, the TAPQOL scales were constructed from the data for the preterm children sample. The psychometric performance of these scales was evaluated for both the preterm children sample and the general population sample. Cronbach's alpha ranged from 0.66 to 0.88 for the preterm children sample and from 0.43 to 0.84 for the general population sample. The unidimensionality of the separate scales was confirmed by principal component analysis for both the preterm children sample and the general population sample. Spearman's correlation coefficients between scales were, on average, low. T-tests showed that the very preterm children, the children with chronic diseases, the less healthy and the less happy children had lower mean scores on the TAPQOL scales than healthy children, indicating a worse quality of life. This study shows that the TAPQOL is a reliable and valid parent's perception of HRQoL in preschool children. More research is needed to evaluate the psychometric performance of the TAPQOL in different clinical populations.

The proxy problem: child report versus parent report in health-related quality of life research.

This study evaluates the agreement between child and parent reports on children's health-related quality of life (HRQoL) in a representative sample of 1,105 Dutch children (age 8-11 years old). Both children and their parents completed a 56 item questionnaire (TACQOL). The questionnaire contains seven eight-item scales: physical complaints, motor functioning, autonomy, cognitive functioning, social functioning, positive emotions and negative emotions. The Pearson correlations between the child and parent reports were between 0.44 and 0.61 (p < 0.001). The intraclass correlations were between 0.39 and 0.62. On average, the children reported a significantly lower HRQoL than their parents on the physical complaints, motor functioning, autonomy, cognitive functioning and positive emotions scales (paired t-test: p < 0.05). Agreement on all of the scales was related to the magnitude of the HRQoL scores and to some background variables (gender, age, temporary illness and visiting a physician). According to multitrait-multimethod analyses, both the child and parent reports proved to be valid.

Measuring health-related quality of life in children: the development of the TACQOL parent form.

Health-related quality of life (HRQoL), conceptualized as patients' own evaluations of their health status, is an important criterion in evaluation health and health care and in the treatment of individual patients. Until now, few systematic attempts have been made to develop instruments to assess the HRQoL of children using such a conceptualization. This article describes the conceptualization and results of a study aiming to develop such an instrument for children aged 6-15 years using their parents as a proxy. The feasibility and psychometric performance of the instrument were evaluated in a study of 77 patients of the paediatric out-patient clinic of Leiden University Hospital. For each of the a priori-defined domains, a parent form scale could be constructed with satisfactory reliability and moderate correlations with the other scales. Only some of the parents indicating health status problems also signalled negative reactions to these problems. This is, in our view, a strong argument for the distinction between health status and quality of life (QoL). The correlation coefficients between the parent form and a children's questionnaire were low. Overall, the psychometric performance of the TACQOL parent form looks promising, which suggests that this instrument--with some modifications--can indeed be used to assess group differences in HRQoL in children. The results, however, should be replicated in larger samples, currently under study. The relation between parents' proxy reports on the HRQoL of their children and children's self-reports needs further investigation.