Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

Abstract

Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent–provider concordance with regards to prognosis, as well as the need for bereavement supports. The second decade expanded PPC oncology investigation to include the entire cancer continuum and the voices of patients. Other studies identified the need for support of parents, siblings, and racial and ethnic minority groups. Promising interventions designed to improve outcomes were tested in randomised clinical trials. Future research will build on these findings and pose novel questions about how to continue to reduce the burdens of paediatric cancer.

Differences in coping strategies among young adults and the elderly with cancer

“…Rosenberg et al . concluded that the resilience of young people recently diagnosed with cancer is directly associated with their personal resources and learned abilities: stress management, goal‐setting, positive reframing, searching for benefits, social support, and maintaining relationships with relatives and peers . One recent study on depression in cancer survivors found no difference in the rates of clinically relevant depression between the younger and older adult cohorts, although there was a trend toward more depression among the younger patients.…”

Spiritual and religious coping and depression among family caregivers of pediatric cancer patients in Latin America

“…Pediatric cancer remains a life‐changing diagnosis with substantial prognostic uncertainty and high caregiving demands; affecting both children/adolescents as well as their parents who usually provide extensive care . Studies have shown that these family caregivers (FCs) are subjected to physical and psychological burden during and after their children's medical care …”

“…1 Studies have shown that these family caregivers (FCs) are subjected to physical and psychological burden during and after their children's medical care. [2][3][4][5] In fact, caregivers of pediatric cancer patients are at high risk for developing different types of somatic complaints 2,4,6 and higher levels of inflammatory markers (eg, cortisol and C-reactive protein). 7 It is estimated that 20% to 66% of FCs present with significant depressive symptoms, 6,8 and 20% to 30% of caregivers are at high risk for psychiatric morbidity.…”

Who is responsible for delivering palliative care to children with cancer?

“…Children who receive timely subspecialty PPC services at the end of life experience more comprehensive and successful pain and symptom assessment, fewer invasive procedures, and more documentation regarding advance care plans when compared to children who do not receive subspecialty PPC . In contrast, late PPC referrals translate to missed opportunities for patients and families to prepare for the end of life, in turn leading to increased child suffering and increased psychological distress among parents and surviving siblings . Involving subspecialty PPC neither negates nor replaces the role of pediatric oncologists.…”

“…Barrier #3: “Pediatric oncologists are unaware of the potential benefits and scope of PPC.” Although the evidence‐base supporting the scope and potential benefit of PPC is well established, pediatric oncologists may be unfamiliar with PPC research. Reasons include the overwhelming volume of medical literature with which they must keep up to date (their attention is directed to cutting edge biomedical studies), as well as an inherent bias to alternative types of science (the perception that PPC scientific findings are less compelling than classic laboratory‐based experiments or drug‐treatment clinical trials).…”