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. 2024 Mar;183(3):1305-1314.
doi: 10.1007/s00431-023-05330-4. Epub 2023 Dec 19.

Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives

Daniel Toro-Pérez  1   2   3   4 , Joaquin T Limonero  5 , Montserrat Guillen  6 , Catalina Bolancé  6 , Sergi Navarro Vilarrubí  7   8 , Ester Camprodon-Rosanas  9
Affiliations

Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives

Daniel Toro-Pérez et al. Eur J Pediatr. 2024 Mar.

Abstract

The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6.95, SD = 1.85) than their parents (mean = 5.39, SD = 2.43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3.70; SD = 1.95) and children (mean = 5.60; SD = 1.17) evaluate QoL more negatively.

Conclusions: Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary.

What is known: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked.

What is new: • Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored.

Keywords: Children; Life-limiting conditions; Parents; Pediatric palliative; Psychological assessment; Quality of life.

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Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Flow chart of children evaluated
Fig. 2
Fig. 2
Perception of children’s QoL made by each parent–child dyad
See this image and copyright information in PMC

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