The quality of life of children facing life limiting conditions and of their parents in Belgium: a cross sectional study
Abstract Background: Paediatric palliative care (PPC) aims to improve the quality of life of children, however, this objective is rarely measured in clinical care. PPC is provided in Belgium through 6 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 monitored by PLT and the QoL of their parents.Methods: During interviews with children and parents, an original sociodemographic 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 Caregivers (QOLLTI-F) were completed by PLT members. Descriptive statistics were conducted on the sociodemographic data and the CPOS-2 and QOLLTI-F scores. The association between clinicians’ judgement of QoL and the scores on the QOLLTI-F and CPOS-2 was explored using Spearman’s correlation coefficients and boxplots. Pearson’s chi square test and Fisher’s exact test were used to investigate significant differences between scores. The results were discussed and interpreted with 6 PLTs.Results: Seventy-three children aged 1-18 years were included in the study. For items focused on emotional well-being, children reported that their QoL was higher than that of their parents. The QoL scores were not significantly associated with the severity of the child’s condition. Discrepancies were not found between health care professionals’ perceptions and parents’ perceptions of their QoL, as measured by the CPOS-2.Conclusion: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLT in Belgium..
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Preprint| Erscheinungsjahr: |
2022 |
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| Erschienen: |
2022 |
| Enthalten in: |
ResearchSquare.com - (2022) vom: 11. Juli Zur Gesamtaufnahme - year:2022 |
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| Sprache: |
Englisch |
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| Beteiligte Personen: |
Friedel, Marie [VerfasserIn] |
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| Links: |
Volltext [kostenfrei] |
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| doi: |
10.21203/rs.3.rs-1478935/v1 |
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| PPN (Katalog-ID): |
XRA035641932 |
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| 520 | |a Abstract Background: Paediatric palliative care (PPC) aims to improve the quality of life of children, however, this objective is rarely measured in clinical care. PPC is provided in Belgium through 6 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 monitored by PLT and the QoL of their parents.Methods: During interviews with children and parents, an original sociodemographic 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 Caregivers (QOLLTI-F) were completed by PLT members. Descriptive statistics were conducted on the sociodemographic data and the CPOS-2 and QOLLTI-F scores. The association between clinicians’ judgement of QoL and the scores on the QOLLTI-F and CPOS-2 was explored using Spearman’s correlation coefficients and boxplots. Pearson’s chi square test and Fisher’s exact test were used to investigate significant differences between scores. The results were discussed and interpreted with 6 PLTs.Results: Seventy-three children aged 1-18 years were included in the study. For items focused on emotional well-being, children reported that their QoL was higher than that of their parents. The QoL scores were not significantly associated with the severity of the child’s condition. Discrepancies were not found between health care professionals’ perceptions and parents’ perceptions of their QoL, as measured by the CPOS-2.Conclusion: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLT in Belgium. | ||
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