Poster Presentation COSA-IPOS Joint Scientific Meeting 2012

A systematic review comparing quality of life definitions and measurement strategies between adult palliative care and pediatric palliative care (#432)

Josianne Avoine-Blondin 1 2 , Véronique Parent 1 2 , Léonor Fasse 3 , Michel Duval 1 4 , Nago Humbert 1 4 , Serge Sultan 1 4
  1. CHU Ste-Justine, Montréal, Qc, Canada
  2. Université de Sherbrooke, Longueuil, Qc, Canada
  3. l’Institut Curie, Paris, France
  4. Université de Montréal, Montréal, Qc, Canada

Purpose. Each year, about 1300 children suffering from cancer are treated in pediatric palliative care units in Canada. Recent clinical and ethical literature has raised the question of the appropriate definition of quality of life (QoL) of children in palliative care. The ability of professionals to define and evaluate QoL is key to core decisions in the trajectory of children and end-of-life issues. It is also linked with ethical questions such as futility of treatment. Although the concept behind adult QoL in palliative care has been clarified and is now subjected to measure, this is not the case in pediatric palliative care. . The objective of this review is to identify the degree of similarity of definitions of QoL in pediatric palliative care with adult palliative care.
Methods. We led an extensive systematic search of Medline, PsycInfo, CINAHL databases to identify empirical studies including an assessment of QoL in palliative settings during the last twenty years. We recorded domains present in adult and child assessment strategies and compared the similarity between the two age groups.
Results. There are very few strategies to assess QoL in pediatric palliative care. The domains of QoL in the two age groups are largely similar which suggest that end-of-life issues are viewed as non age-specific. Almost no positive behaviors, activities or positive emotions were included in assessment strategies of ped QoL (smiles, playing, meaning-finding, connecting with people, etc.) which contradicts the traditional definition of QoL. Conclusion. New assessment strategies should be develop to approach QoL in children, more in line with real life issues and including positive activities which constitute the core of QoL in children. Assessment of QoL should address specific domains of children life in end-of-life settings as they have been identified by clinicians.