Evaluating what we intend to reach: How should we measure children's quality of life in a palliative context? Searching for valid indicators of quality palliative care for children and their families

Friedel, Marie;Brichard, Bénédicte;Aujoulat, Isabelle
(2018) 10th Biennial Joanna Briggs Institute Colloquium 2018 Successful implementation of EBP: Hard work or good luck? — Location: Antwerp, Belgium (4.May.2018)

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Background: Paediatric palliative care (PPC) is delivered in Belgium through 5 paediatric liaison teams (PLT). PPC aims to promote quality of life (QoL). However, validated short instruments available in French and able to capture QoL in a family-centred and holistic approach, are still lacking. Measuring QoL is challenging due to heterogeneity in age and disease; lack of consensus on when PPC starts; and legal/ethical requirements involved in researching children. Objectives: to analyse from the perspective of children, parents and health care professionals, the relevance, feasibility and acceptability of the new French version of the APCA-Children’s Palliative Outcome Scale (CPOS). Methods: After a cross-cultural validation of the English version of the CPOS [1] into a French version, a pilot-test was started among children and their parents, at one PLT in Belgium. The added SEIQoL interview guide [2] and QOLLTI-F [3] verified the completeness of dimensions covered by the CPOS. Focus groups and think aloud protocols among PLT were performed. Results: 6 children (8-18 years) and 9 parents participated. Social interactions of children did not seem to be sufficiently identified by the CPOS. Overall feasibility and acceptability of the other instruments were observed, except for the SEIQoL which could not be used among children with severe cognitive impairment. PLT showed strong interest to implement outcome measures for evaluating the quality of care provided. Perspectives: Further pilot-testing of CPOS is requested before extended multi-centric field-testing. [1] African Palliative Care Association. Guidelines for using the APCA African Children’s Palliative Outcome Scale. 2012. [2] A. Hickey, G. Bury, C. O’Boyle, F. Bradley, F. O’Kelly, W. Schannon, A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ 1996; 313:29-33. [3] R. Cohen, A. Leis, D. Kuhl., C.Charbonneau, P. Ritvo, F. Ashbury. QOLLTI-F: measuring family carer quality of life. Palliative Medicine 2006; 20(8):755-767.
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Friedel, M., Brichard, B., & Aujoulat, I. (2018). Evaluating what we intend to reach: How should we measure children’s quality of life in a palliative context? Searching for valid indicators of quality palliative care for children and their families. Journal of Palliative Medicine. Published. 10th Biennial Joanna Briggs Institute Colloquium 2018 Successful implementation of EBP: Hard work or good luck?, Antwerp, Belgium. https://hdl.handle.net/2078.5/98087 (Original work published 2018)