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

Abstract

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.

Health‐related quality of life in children and emotional reactions of parents following completion of cancer treatment

“…HRQOL of the childhood cancer patients was assessed with the TNO-AZL Preschool Quality of Life questionnaire for children aged 1-5 years (TAPQOL) [19,20], and with the TNO-AZL Children's Quality of Life questionnaire; Parent Form for children aged 6-11 years (TACQOL-PF) [21] and Child Form for children aged 8-15 years (TACQOL-CF), [22,23]. These questionnaires are generic Dutch instruments that measure health status problems weighted by the impact of the health status problems on well-being.…”

“…Norm data from the general Dutch population were available. The instruments measure HRQOL on group level in a reliable and valid way [19][20][21][22][23][24].…”

“…The Cronbach alphas, in our study population, were moderate to good. Norm data were collected via the Centers for Preventive Youth Health Care all over The Netherlands, via stratified random sampling [21][22][23]25].…”

“…The mean level of distress of the mothers (M ¼ 10.1) as well as that of the fathers (M ¼ 8.2) was in the clinical range, that is, GHQ-total score !5. Moreover, the percentage of mothers and fathers who reported a clinically elevated level of psychological distress was significantly higher (P < 0.001) c General Dutch population of children aged 6-7 years [25].…”

Eye movement desensitization and reprocessing (EMDR) in children and adolescents with subthreshold PTSD after medically related trauma: design of a randomized controlled trial

“…The Q uality of Life of the participants is assessed with the TNO-AZL Questionnaire for Children’s Health-Related Quality of Life (TACQOL; 63 items) for children aged 6–15 years (Vogels et al, 1999; Vogels, Bruil, Koopman, Fekkes, & Verrips, 2004). The child, as well as the parent form, are administered.…”