Early palliative care for children with cancer: A multi-institutional survey study of pediatric oncology patients and parents

Abstract

Background: Based on strong recent evidence, clinical consensus is growing that early Palliative care (PC) integration for cancer patients is the optimal care model; however, PC remains underutilized in pediatric oncology. We conducted a multi-institutional study of pediatric oncology patient/parent pairs to determine perception of symptom burden and management early in treatment and assess attitudes towards early integration of PC. Methods: Novel survey tools were developed using validated formats when available. After IRB approval and pre-testing, surveys were administered to 129 patient/parent dyads at NIH, Johns Hopkins and St Jude Children’s Research Hospital. Eligibility criteria included patient age 10-17 at diagnosis, time from diagnosis > 1 month and < 1 year, English-speaking and consent/assent of both parties. Survey data was assessed for trends in response content frequencies, percentages and degree of concordance between parent and child. Results: Patients reported a high degree of suffering from symptoms in the first month of cancer therapy with reported overall suffering of: 84% from nausea, 75% from loss of appetite, 74% from pain, 60% from anxiety, 53% from constipation, 50% from depression, and 40% from diarrhea. Most children and parents (54/53%) stated they would probably or definitely want to meet with PC around diagnosis, while few expressed definite opposition (2% children, 6% parents). A large percentage of children and parents (36/40%) felt that PC integration from diagnosis would have been a positive addition to their overall care and the majority (59/50%) indicated that PC teams should be involved from the beginning of cancer therapy. Children were more likely than parents to indicate that PC would have been helpful for treating symptoms 40% vs 18% (p < 0.0001). Conclusions: Pediatric oncology patients experience a high degree of suffering from the beginning of cancer therapy. The majority of patients and parents would welcome early integration of PC which could be beneficial for improved symptom management, reducing suffering, and improved overall care.