Exploring the quality of life of children and adolescents in palliative care and that of their parents

Pediatric palliative care aims to promote the best possible quality of life for children, in a holistic approach centered on all family members.
A systematic literature review revealed that there were no measurement instruments capable of measuring the quality of life of children in palliative settings (Coombes et al. 2016).
Based on preliminary work carried out by a team of researchers at Kings College London (Downing et al., 2018), a first instrument called children's palliative outcome scale (CPOS) has been developed and tested in 3 African countries. It is used to assess the impact of pediatric palliative care.
A team of researchers at the Institut de recherche Santé et Société-Université catholique de Louvain tested the validity of this instrument, its acceptability by children and parents and its feasibility in a single-center pilot study (involving 14 children, 19 parents and 10 members of pediatric liaison teams). Several questions were added to the original instrument.
At present, this multicenter study involving 5 pediatric liaison teams (attached to 5 university hospital centers: Hôpital des enfants Reine Fabiola, Cliniques universitaires st Luc, CHU Liège -Citadelle, UZ Gand, UZ Leuven) and a team attached to CHC Liège Espérance aims to test the psychometric properties of the CPOS adapted into French with a larger sample of children followed by these teams.
Every family followed by the 6 teams will be invited to take part in the study (children aged between 1 and 18, families understanding and speaking a minimum of French). An information letter will be distributed to children and parents, and their consent (or assent for the child via an age-appropriate written document) will be systematically requested.
Several instruments will be used by members of the above-mentioned pediatric teams during routine home or hospital visits with children and their families: the CPOS (Downing 2018), the KINDL (validated generic quality of life questionnaire for healthy children, Erhart et al. 2009), the QOLLTI-F v.2 (parental quality of life questionnaire, Cohen 2007, 2015).
The ultimate goal of this national multicenter study is to individualize the care offered to children with life-limiting/life-threatening illnesses through the use of a measurement instrument (the adapted CPOS translated into French and Dutch), implemented in a clinical routine and able to serve as a clinical decision aid.