Trends in Palliative Care Research 2022; Special Edition 3 Oncology

Commentary by:

Dr. Cielle Stapleton MD – Department of Pediatric Hematology/Oncology/BMT CancerCare, Manitoba Dr. Cielle Stapleton completed her fellowship in pediatric hematology/oncology at BC Children’s Hospital and is currently working as a pediatric hematologist/oncologist at CancerCare Manitoba in Winnipeg. She has an interest in adolescents and young adults (AYA).

Feature Article

Dussel, V., Orellana, L., Holder, R., Porth, R., Avery, M., & Wolfe, J. (2022). A multisite randomized controlled trial of an early palliative care intervention in children with advanced cancer: The PediQUEST Response Study Protocol. PLOS ONE, 17(11), e0277212.


This article reviews a study, currently in progress, that uses early integration of pediatric palliative care to improve quality of life and survival. Randomized control trials (RCT) in adults have shown the benefit of early incorporation of palliative care, but comparable studies are lacking in pediatrics. A prior pilot study by these authors trialed a symptom questionnaire for pediatric palliative care patients called PediQUEST. Subsequently, this study looks to evaluate PediQUEST and how information gained from it can improve current practice using a response team (palliative care/interdisciplinary team).  The intervention arm consists of weekly symptom burden and quality of life surveys with survey reports, and monthly visits. The control group, referred to as the usual cancer care, receives the usual care a patient would receive. As there is not a definitive “usual care”, care may vary between centers. Therefore, if implemented broadly, the benefit compared to the intervention group may vary between centres. At our centre, usual care often consists of weekly symptoms review via in person visits or phone calls. This is a similar frequency to the intervention arm in this study. However, despite attempts to be thorough in symptom review, some symptoms may be overlooked, especially in a shared care model when different physicians and healthcare team members are assessing the patient. Therefore, a standardized questionnaire can ensure consistency. Although training was required for healthcare providers on the palliative care response team, the time required was minimal (2 half day sessions) and is feasible to incorporate in practice.
This article addresses many important but often overlooked areas of pediatric oncology, including interdisciplinary care, adolescent and young adults, psychological support and care giver stress. Pediatric oncology and palliative care are increasingly incorporating multidisciplinary teams into patient care in an informal setting. This study provides a structured approach to the use of inter-disciplinary care. If successful, use of this concept in pediatric oncology in Canada can lead to a streamlined way to involve multi-disciplinary healthcare teams. Due to multiple factors including perception of families, reluctance, and misnomers, involvement of palliative care consultation is often delayed and therefore only initiated in the later stages of disease treatment, even if the disease has been recognized as advanced or incurable earlier in the disease course. It would be beneficial for additional training to be provided on how to decrease these barriers. For example, the introduction of palliative care can hold a negative connotation for families. Reframing the goals of the palliative care team, such as emphasizing symptom control, can provide a different outlook for the family.
Previous research in adults has identified distress associated with an advanced cancer diagnosis, but limited studies have been done in pediatrics. It is increasingly recognized that children and adolescents and young adults (AYA) with cancer have unique psychosocial needs, requiring individualized care. As such there is an increasing emphasis on providing adequate care for and optimizing quality of life for AYAs. This study addresses the individualized needs of this population and works to overcome barriers faced by AYAs. This population is especially susceptible mental health challenges during chronic illness. This tool can aid in identifying and managing these needs. The center in which I work, along with several other Canadian centers, are establishing AYA oncology programs to provide help meet these needs. PediQUEST could be incorporated into the development of these program.
In addition to addressing the needs of patients, well-rounded, family-centered care involves addressing the needs of family and caregivers. The secondary objective in this study is to identify and improve parent psychological stress. Through my experience as a pediatric oncologist, caregivers often experience a significant amount of stress that stems from many factors including time away from work, relocation of their family, and anxiety surrounding patient illness. As patients often have many issues to be addressed, the psychological health of parents is often overlooked. Integration of this model at a centre, such as my own, can ensure that caregiver needs are regularly assessed and help to facilitate support for these families.  After all, to help families succeed in caring for their child, we must work to recognize their psychological stress and support their needs.
Like many research projects, COVID lead to a closure of the study for 3 months, leading to a delay in patient enrollment and subsequent delay in study completion. To adapt to the restrictions placed during COVID, a virtual option for study participation was added and the study proceeded. This illustrates an excellent example of how research can adapt surrounding a pandemic and is inspiring to researchers facing similar challenges.
Overall, the results of this multicentre RCT will be important to advise oncology teams how to best support children and AYAs facing advanced cancer. This article illustrates a feasible intervention to decrease symptom burden in children with advanced malignancy. If this intervention proves to be beneficial, this program can be widely applied in pediatric oncology and palliative care programs. I am eager to see the final results from this study, and to subsequently initiate practice changes to benefit my patient and families. In the interim, review of this paper has reminded me the importance of thoroughly reviewing patient symptoms, supporting the psychological needs of caregivers and working together as a multi disciplinary team.

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