Tammie Dewan, MD, MSc, FRCPC – Alberta Children’s Hospital, Department of Pediatrics, University of Calgary Dr. Dewan is a complex care paediatrician at Alberta Children’s Hospital and a clinician investigator studying health service delivery to children with medical complexity.
Toro-Perez, D., Camprodon-Rosanas, E., Navarro Vilarrubi, S., Bolance, C., Guillen, M., & Limonero, J. T. (2023). Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals. Palliative & Supportive Care, 1 EP – 9.
Advances in medical treatment and technology are supporting children with chronic life-threatening and life-limiting illness to live longer lives. Alongside the goal of extending life, there must be a concurrent focus on comfort, quality of life and well-being for the child and their families. Pediatric palliative care has a significant role to play in balancing these goals. These services are becoming increasingly integrated into the care of children with a variety of underlying conditions and trajectories. Particularly in situations where curative treatments are unavailable, lack evidence or have failed, quality of life evaluation weighs heavily into major decisions such as whether to proceed with life-prolonging treatments. Quality of life is ideally assessed through self-report, but alternatively could be determined by a proxy (parent), professional or external observer.
Thus, it is imperative to establish the degree of concordance between how patients/families and healthcare professionals view important aspects of quality of life, including comfort, symptom severity, functional status and emotional well-being since this is such an influential factor in decision-making. This study seeks to compare the perception of the child’s well-being between child/parent and health care professional in the setting of a palliative care unit.
Toro-Perez’s (2023) cross-sectional study “Assessing Well-Being in Pediatric Palliative Care: A Pilot Study About Views of Children, Parents and Health Professionals” compared perceptions of emotional well-being between either children or their parents and the child’s treating healthcare professionals in the Pediatric Palliative Care Unit (PPCU) at a single children’s hospital in Spain. The primary participants were children with a life-limiting or life-threatening illness (n=30, mean age 10.8 years [standard deviation = 6.1]. Children either reported their own experience (n=14), if they had a cognitive age of 8 or older, or a parent reported on their behalf (n=16). A nurse or physician in the PPCU was also asked to complete the same measure of well-being within three days for comparative purposes. The measure used was the Distress Thermometer (DT), an instrument describing an individual’s general level of distress on a 10-point visual analog scale. The questions posed were: “Over the last few days, in general, how have you been feeling?” or “Over the last few days, how would you assess the well-being of your/this child?”
About half the children in the study population had an oncologic diagnosis and about one-third had a primary neurological diagnosis. In about two-thirds, their clinical condition was deemed stable. About half the children were able to provide self-report. The participants were analyzed in two groups: parents/children and nurses/physicians. In the large majority of cases, emotional well-being was scored higher by parents/children than by their paired professionals (mean 7.1/10 compared to 5.8/10). In only three cases (10%) were the scores from professionals higher. There was no relationship between scores and disease status, disease stability, age or school attendance, although the sample size was small. Likewise, there is no clear difference in the discrepancy between children and professionals compared to parents and professionals.
This study speaks to the importance of acknowledging perceptual differences between healthcare professionals and children/families. Each of us comes with past experiences, personal values, priorities and perspectives that shape our sense of well-being, either of self or other. Even two individuals encountering the same disease or circumstance may perceive it very differently based on these and other factors. Perhaps most importantly, health care professionals who often interface with these children and families in the context of their most acute and distressing moments, must recognize how the limitation this places on their assessment of the child’s well-being and quality of life. As an illustration, many of the variables thought to relate to emotional well-being (such as disease stability and school attendance), did not show such a relationship in this study. We must take every opportunity to explore the child and/or parent’s own assessment of each stage of their journey and how this should guide further treatment. This is particularly true in palliative care when stakes are high and opportunities to improve quality of life must be seized and prioritized.
This study adds to other evidence that suggests that quality of life is underestimated by professionals compared to children’s self-assessment and even among parents in comparison to their children (Janse et al., 2004; White-koning et al., 2008). Although this study is a small sample at a single institution, it should remind all of us of the importance of exploring the meaning of illness, disease and symptoms as they pertain to quality of life on an individual basis expecting that, more often than not, our own perceptions may miss the mark.