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How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

ABSTRACT: It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context.We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year.Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child's non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools.The formulation of explicit criteria to assess the quality of life in this context, along with detailed recommendations provided by professionals, support the development of systematic measurement strategy. Such a strategy would contribute to the development of common care goals and further facilitate communication between professionals and with the family.

SUBMITTER: Avoine-Blondin J

PROVIDER: S-EPMC5938811 | biostudies-other | 2018 May

REPOSITORIES: biostudies-other

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How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

Avoine-Blondin Josianne J Parent Véronique V Fasse Léonor L Lopez Clémentine C Humbert Nago N Duval Michel M Sultan Serge S

BMC palliative care 20180508 1

<h4>Background</h4>It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present ...[more]

PMID: 29739375

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Project description:BACKGROUND:People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity. AIM:To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care. DESIGN:Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to ?8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death ?6, 5-3 and 2-0 months). Linear mixed models were calculated. SETTING/PARTICIPANTS:A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included. RESULTS:In prospective analyses, quality of life, functioning and symptoms-except nausea/vomiting-remained generally stable over time. In retrospective analyses, patients 2-0 months before death reported significantly lower quality of life and physical functioning scores than those 5-3 months before death, who in turn scored lower than those ?6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5-3 to 2-0 months before death. Nausea/vomiting only increased when comparing those ?6 months before death with those 2-0 months before death. CONCLUSION:While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.

Dataset Information

How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

Publications

How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

Similar Datasets

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