Friedel Marie, Aujoulat Isabelle, Brichard Bénédicte, Fonteyne Christine, Renard Marleen, Degryse Jean-Marie
Department of Life Sciences and Medicine (DLSM), Faculty of Sciences, Technology and Medicine (FSTM), University of Luxembourg, 4365 Esch-sur-Alzette, Luxembourg.
Institute of Health and Society (IRSS), Université Catholique de Louvain, 1200 Brussels, Belgium.
Children (Basel). 2023 Jul 5;10(7):1167. doi: 10.3390/children10071167.
Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents.
During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs.
73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity.
This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.
儿科姑息治疗（PPC）旨在提高儿童的生活质量，但在临床护理中很少对这一结果进行测量。在比利时，通过六个跨学科儿科联络小组（PLT）提供PPC，以确保为患有危及生命或生命受限疾病（LLC/LTC）的儿童提供持续护理。本研究旨在测量由PLT随访的LLC/LTC儿童及其父母的生活质量（QoL）。
在访谈期间，PLT成员填写了一份原始的社会人口学问卷、儿童姑息治疗结果量表第2版（CPOS-2）、儿童和青少年健康相关生活质量问卷（KINDL）以及危及生命疾病家庭照顾者生活质量问卷（QOLLTI-F）。使用统计学方法调查得分之间的显著差异。与六个PLT讨论并解释了结果。
73名年龄在1至18岁之间的儿童被纳入研究。特别是在关注情感项目的方面，儿童报告的生活质量高于他们的父母。生活质量得分与儿童病情的严重程度没有显著关联。
本研究首次概述了比利时由PLT随访的儿童及其父母的生活质量。
