Pediatric cancer patients report high levels of suffering early in treatment and most were not opposed to early palliative care involvement, according to a study published in JAMA Oncology.1
Although early palliative care is considered an important part of optimal care for cancer patients, it is perceived as unwanted or unneeded early on in pediatric oncology.
Deena Levine, MD, of the Division of Quality of Life and Palliative Care and the Department of Oncology at St. Jude Children’s Research Hospital in Memphis, Tennessee, and colleagues wanted to better understand patients’ and parents’ perceptions of palliative care and symptom burden in early treatment for pediatric cancer.
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Children 10 to 17 years of age with a recent cancer diagnosis and a parent were assessed by survey between 2011 and 2015. Data was obtained on their perceived levels of suffering from symptoms and perceptions of early palliative care involvement in their care.
Of the 129 patient-parent dyads, respondents included more women than men (114 vs 15) but similar numbers of girls and boys (61 vs 68). During the first month of treatment, patients commonly reported nausea (84.5%), decreased appetite (75.2%), and pain (74.4%). Likewise, patients also often reported anxiety, constipation, depression, and diarrhea (59% to 40%).
Many of the patients who reported suffering from symptoms indicated that a specific symptom caused a “great deal” of suffering.
In regards to early palliative care involvement, there was little opposition from children (1.6%) or parents (6.2%). Likewise, few reported concerns about loss of hope, interference with therapy, or impact on their relationship with the oncologist with early palliative care involvement.
The only significant difference between patient and parent responses was that children reported more often that palliative care may have been helpful for their symptoms (40.3% vs 17.8%, P <.001).
“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,” the researchers write.
“Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.”1
“These data suggest that pediatric oncologists such as myself do not sufficiently meet one of our fundamental obligations to these children — we are not adequately treating their suffering. We must think about how best to respond and remedy this gap,” writes Jennifer W. Mack, MD, MPH, of the Division of Pediatric Hematology/Oncology at Boston Children’s Hospital, in an accompanying editorial.2
References
1. Levine DR, Mandrell BN, Sykes A, et al. Patients’ and parents’ needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Oncol. 2017 Mar 9. doi: 10.1001/jamaoncol.2017.0368 [Epub ahead of print]
2. Mack JW. Pediatric palliative care — a shared priority. JAMA Oncol. 2017 Mar 9. doi: 10.1001/jamaoncol.2017.0351 [Epub ahead of print]
