Pediatric Oncology Patient and Parent Attitudes on Early Palliative Care Integration


Key Points

  • Few pediatric oncology patients or their parents expressed negative attitudes toward early palliative care.
  • Half or more of patients and parents indicated that palliative care teams should be involved from the beginning of treatment.

Few pediatric oncology patients or their parents expressed negative attitudes toward early integration of palliative care during cancer treatment, according to a study by Levine et al reported in JAMA Oncology.

Study Details

The study involved completion of surveys by 129 patient-parent dyads form hospital-based pediatric oncology ambulatory clinics and inpatient units (Pediatric Oncology Branch at the National Institutes of Health, Johns Hopkins Pediatric Oncology, and St Jude Children’s Research Hospital) between September 2011 and January 2015. All patients were between the ages of 10 and 17 and were diagnosed with cancer 1 month to 1 year prior to enrollment. Of the 129 patients, 68 were boys and 61 were girls; of the 129 parents, 15 were men, and 114 women.

Symptom Reporting During First Month

Patients reported substantial suffering (ie, a great deal or a lot) from numerous symptoms during the first month of treatment, including nausea (52.3%), loss of appetite (50.5%), constipation (30.4%), pain (30.2%), anxiety (28.6%), depression (28.1%), and diarrhea (23.1%). Agreement between patient and parent on the category of severity of symptoms was generally low, including 26% to 29% exact concordance and 40% to 69% concordance within 1 response category.

As stated by the investigators, “While there was consistent lack of agreement within parent-patient dyads in symptom reporting, there was no reliably observed trend toward either overestimation or underestimation of symptom suffering among discordant responses. This suggests that, when possible, symptom assessments should be elicited directly from age-appropriate pediatric patients because proxy reports may not be optimally representative.”

Attitudes on Early Palliative Care

Opposition to early palliative care involvement was expressed by 1.6% of patients and 6.2% of parents, with 4.7% and 3.9% perceiving any detrimental effect on their relationship with their oncologist, 2.3% and 7.8% expressing loss of hope, and 2.3% and 1.6% identifying therapy interference with early involvement, respectively. Overall, 58.9% of patients and 50.4% of parents indicated that palliative care teams should be involved in care from the beginning of cancer therapy; this sentiment was more likely among patients who rated current quality of life as poor or fair (73.1%) than among those rating it as good (61.0%) or very good or excellent (51.6%).

Significant differences in patient-parent attitudes included more patients’ indicating that palliative care would have helped in treating their symptoms (40.3% vs 17.8%, P < .001).

The investigators concluded: “Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.”

The study was funded in part by the American Lebanese Associated Charities.

Deena R. Levine, MD, of the Division of Quality of Life and Palliative Care, St Jude Children’s Research Hospital, is the corresponding author of the JAMA Oncology article.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.