Children over 2 years of age with advanced cancer experience high physical and psychological symptom distress, resulting mostly from pain, fatigue, drowsiness, and irritability, according to a study published online April 27 in the Journal of Clinical Oncology.

In the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study, children often reported suffering from pain that is known to be treatable, wrote Dr. Joanne Wolfe, director of pediatric palliative care at Boston Children’s Hospital and division chief of pediatric palliative care service in the department of psychosocial oncology and palliative care at Dana-Farber Cancer Institute, Boston (J. Clin. Oncol. 2015 April 27 [doi: 10.1200/JCO.2014.59.1222]).

“The study makes it evident that there is considerable room for improvement in easing distress in children with advanced cancer. Children experienced substantial suffering from pain throughout the course of the illness and especially at the end of life,” they wrote.

Among 104 children enrolled in the study with 920 completed symptom assessments over a 9-month follow-up, pain was most frequently reported (48%), followed by fatigue (46%), drowsiness (39%), and nausea (35%). Emotional distress was prevalent as well: irritability (37%), sleep disturbance (29%), nervousness (25%), sadness (24%), and worrying (24%). High distress was indicated for most scores.

During the last 12 weeks of life, prevalence of symptoms and levels of high distress worsened. The prevalence of pain increased to 62%; 58% with high distress. Fatigue rose to 49%, and drowsiness to 50%.

To establish patient reported outcomes (PROs) for children, PediQUEST collects child-reported symptoms (or parent-reported when necessary) and HRQoL data via computer and generates feedback reports and email alerts.

Higher symptom scores were associated with several factors, including being female, having a brain tumor, having disease progression within the previous 10 days, and receiving moderate- to high-intensity cancer treatment within the previous 10 days.

“Implications from these findings are not necessarily to decrease the amount or intensity of cancer-directed therapy offered but rather to increase efforts to ameliorate symptom distress,” the investigators wrote.