Current definitions and measures of quality of life in pediatric palliative care: A systematic review (#431)
Aims. Despite the important medical improvements in pediatric oncology, cancer remains the second most common cause of death among children between 5 and 14 years old in North America. Pediatric palliative care is focused on maintaining the best possible quality of life (QoL) in children with cancer. However, defining and assessing the QoL in pediatric palliative care is complex, because of the various dimensions included in QoL and the specificities of end-of-life issues. Moreover, developmental and medical constraints such as age and health status increase the complexity of assessment’s strategies. Recently, some authors have challenged the definition and the assessment of QoL in pediatric palliative care. But, to date, this topic has never been summarized in a systematic review. In the present study, we propose a conceptual and methodological review of QoL in pediatric palliative care.
Methods. Online bibliographic databases (PsycINFO, MEDLINE, and Cinahl) were used to identify relevant studies that address the definition and the measurement of children’s QoL in pediatric palliative care.
Results. Preliminary results show that there are less than 10 studies that specifically investigate the QoL of children in pediatric palliative care. Moreover, findings highlight that there is a need to adapt the definition and the instruments of QoL for children hospitalized in pediatric palliative care to be as close as possible to their subjective experiences and their specific needs.
Conclusions. Current clinical and research literatures suggest that there are specific dimensions to define the QoL in pediatric palliative care. Future research should focus on developing new strategies for assessing QoL that address new topics, such as positive aspects of QoL (playing, smiling, etc.). An optimal definition and a valid and reliable measurement of QoL in pediatric palliative care are crucial to improve medical and psychological interventions and support.