Self-reported symptom screening reduces symptom burden in pediatric cancer patients

Regular, self-reported symptom screening was associated with reduced symptom burden when compared with usual care for pediatric patients with cancer, according to new research led by scientists at the University of Toronto and The Hospital for Sick Children (SickKids).

The study, published today in JAMA, reported results of a randomized control trial of 445 participants aged 8 to 18 years receiving cancer treatment from across 20 pediatric cancer centres in the U.S. Half of the centres participating implemented the screening intervention while the other half provided usual care following a baseline assessment. Patients at the screening sites were asked to self-screen for bother due to 15 symptoms three times per week for a period of eight weeks. Symptoms included feeling sad, worried, or cranky, throwing up, having diarrhea, or being constipated, among others. At the end of the eight-week period, the total symptom score showed a clinically meaningful decrease with 12 of 15 symptoms measured showing a statistically significant decrease.

While we are seeing encouraging survival rates for kids diagnosed with cancer, it's universal that children express severe bother due to treatment they receive. The main purpose of symptom screening is to allow children to have a real voice and express the degree to which they are bothered by these symptoms so we can find ways to make their treatment kinder."

Lee Dupuis, senior associate scientist, at SickKids and professor at the Leslie Dan Faculty of Pharmacy, University of Toronto

Self-reported symptom scores were measured using the Symptom Screening in Pediatrics Tool (SSPedi, pronounced "speedy"), a validated symptom assessment tool previously developed by the study co-authors. An interactive and child-friendly web application tool called Supportive Care Prioritization, Assessment and Recommendations for Kids (SPARK) was also developed to help patients complete and track their "speedy" scores and to inform their healthcare team of their SSPedi scores and to link clinicians to care pathways to address bothersome symptoms.

"Patient reported data is crucial to improving care overall and also to providing better supportive care that enhances kids' quality of life by focusing on what they really want help with," said study lead Lillian Sung, senior scientist and chief clinical data scientist at SickKids and professor at the Institute of Health Policy Management and Evaluation, and Department of Paediatrics, University of Toronto. "This study provides high-quality evidence that an intervention including symptom screening improves symptom control, a finding consistent with adult clinical trials."

As part of the study, the research team also evaluated unplanned healthcare visits and saw an increase in emergency department visits among the screening group. "We think it's likely that because families and parents in particular could see their child's symptom scores, they felt they should seek additional medical attention to help address how their kids were feeling," said Dupuis. "An important takeaway from this finding is that we can look at ways to prepare supportive care pathways for parents and children that can empower them to make informed decisions about their own symptoms."

A separate but related study led by the same team explored the use of SSPedi in Canadian pediatric centres and showed improved symptom scores after only five days. This study was also published today in JAMA pediatrics.

Funding for this study was provided by a project grant from the Canadian Institutes of Health Research and the National Institutes of Health. Care pathway development procedures and early SSPedi development work were supported by the Pediatric Oncology Group of Ontario.