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Early palliative care benefits children with cancer
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Pediatric oncology patients with high degrees of symptom-related suffering appeared more likely than their parents to acknowledge the benefits of early palliative care, according to survey results.
“In what has been coined the ‘they are not ready syndrome,’ lack of patient and family receptivity to early palliative care integration is often cited as a barrier to care provision,” Deena R. Levine, MD, assistant member in the department of oncology and division of quality of life and palliative care at St. Jude Children’s Research Hospital, and colleague wrote. “The aim of the study was to establish whether patients have unmet needs at the initiation of cancer therapy, and whether patient and family attitudes are indeed a barrier to early palliative care involvement.”
Researchers surveyed 129 patient–parent pairs (positive response rate, 92.1%) from three participating sites from September 2011 to January 2015.
The children’s diagnoses — which occurred from 1 month to 1 year before enrollment — included solid tumors (n = 41), leukemia (n = 38), lymphoma (n = 26); brain tumors (n = 20), unspecified cancers (n = 1) and unknown (n = 3).
Median patient age was 14 years (range, 10-17). The majority were boys (53%) and white (66%). Median page among parents was 41.6 years. The majority were women (88%) and white (70%).
Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient–parent concordance served as primary endpoints.
In the first month of cancer therapy, patients reported nausea (84.5%), loss of appetite (75.2%), pain (74.4%) anxiety (59.7%), constipation (53.5%), depression (49.6%) and diarrhea (40.3%) as their primary symptoms.
Patients reported substantial suffering from nausea (52.3%), loss of appetite (50.5%), constipation (30.4%), pain (30.2%), anxiety (28.6%), depression (28.1%) and diarrhea (23.1%).
The majority of patients (75%) and parents (62%) said they felt their oncology care teams should focus “a great deal” or “a lot” on their quality of life from the beginning of cancer therapy. Most patients (98.4%) and many parents (69.8%) reported they had never heard the term “palliative care.”
A significantly higher percentage of children than parents reported that initiating palliative care near the time of diagnosis would have been helpful for treating symptoms (40.3% vs. 17.8%, P < .001). A higher percentage of children endorsed palliative care intervention if pain or symptom management was a problem (48.8% vs. 34.1%, P = .01), if the cancer worsened or returned (48.8% vs. 31.8%, P = .003), and throughout the entirety of the child’s cancer care (31.8% vs. 20.2%, P = .03).
A majority of patients (58.9%) and about half of parents (50.4%) indicated that palliative care teams should be involved in the care of a child with cancer from the beginning of cancer therapy. Nearly three-quarters (73.1%) of patients who rated their quality of life as poor or fair indicated that palliative care teams should be involved from the beginning of cancer therapy, compared with 61% of those who rated their quality of life as good, and 51.6% of those who rated their quality of life as very good or excellent.
Researchers acknowledged limitations to their study, including its retrospective nature — with a potential for recall bias — and the high percentage of female respondents among parents.
“Palliative care intervention has been demonstrated to reduce suffering for dying children, and the high degree of suffering observed in the first month of cancer treatment in this study suggests that early palliative care integration could offer similar benefit from the initiation of cancer therapy,” Levine and colleagues wrote. “The high degree of observed symptom-related suffering, the low degree of concordance between parent and child perception of this suffering, and the acknowledgement by young patients themselves that early palliative care integration would help with symptom management are unique and noteworthy findings that reflect an unmet need for improvement in early symptom management.”
Palliative care providers have the “remarkable capacity to improve the lives of children they never met,” Jennifer W. Mack, MD, MPH, associate chief of population sciences for pediatric hematology/oncology at Boston Children’s Hospital, wrote in an accompanying editorial. Pediatric oncologists and palliative care clinicians must work together to enhance quality of life from the time of diagnosis, Mack added.
“Of special note, the [researchers] found no evidence to suggest that introducing palliative care undermines hope for children and their parents, many of whom are focused on cure,” Mack wrote. “Rather than experiencing palliative care as a hidden message about prognosis, children and parents see attention to symptoms and quality of life as a hopeful endeavor.”– by Chuck Gormley
Disclosure: American Lebanese Associated Charities funded this study. The researchers and Mack report no relevant financial disclosures.
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