David Freyer, DO, director of the Survivorship and Supportive Care Program at Children’s Hospital Los Angeles, spoke to Becker’s about the clinical trial and what the findings mean for pediatric care.
Editor’s note: Responses have been lightly edited for clarity and length.
Question: Can you provide a brief rundown on how the trial was conducted?
Dr. David Freyer: Twenty pediatric cancer centers nationwide that participated in the trial. Institutions were randomized to either do thrice-weekly electronic symptom screening of children plus use evidence-based clinical care pathways to control symptoms, or to do usual care, which is checking for symptoms only when patients come to clinic and treating symptoms by choice of the clinician. There were 10 institutions in each group. There were 445 children enrolled in the study, ages 8-18.
For both groups, symptom control and quality of life were assessed at baseline, week 4, and week 8. The results showed that children in the electronic symptom screening and care pathway group had better symptom control than the ones who received usual care.
Q: What was your biggest takeaway from the results?
DF: The biggest takeaway from this study is that using a child-reported measure combined with evidence-based care pathways is more effective for detecting when children are having bothersome symptoms during cancer treatment than traditional care, which requires a child to come into clinic to be seen by the clinician and for the clinician to know what is best for treating the symptom.
Q: What role do you see for digital health tools in the broader landscape of oncology care delivery?
DF: Because this was a large, randomized trial done across many pediatric cancer sites in various settings, the results are likely to be very reliable. The results could be used to make this newer approach standard for all children and setting because it would reduce bothersome symptoms and enable children to be more comfortable while receiving cancer treatment.
This study showed that providing children with thrice-weekly opportunities to report their symptoms electronically can better capture symptoms than waiting for the child to come into a clinic.
Q: What challenges should hospitals anticipate in scaling these technologies?
DF: Although this study showed that typical institutions are able to implement this approach, on a larger scale, institutions will need to prioritize this amidst other competing projects and encourage clinicians to use evidence-based care pathways instead of just their own preference. This requires a change in culture and practice from tradition, which can be hard and is the focus of research called “implementation science.”
Additionally, the approach requires that children and families have access to electronic devices and networks on an equitable basis.
Q: Looking forward, how do you envision self-screening evolving in pediatric oncology? Could the study’s framework be adapted for other patient populations or cancer types?
DF: Patient-reported outcomes (PROs), that is, self-screening, is already established in adult oncology. Many studies have shown that among adults, self-screening detects symptoms more accurately than the traditional approach of having clinicians do the screening and reporting. Self-screening is only beginning to be done widely in pediatric oncology. One reason for the delay is not having validated measures for children (i.e., measures that are proven to capture the information they are designed to collect). However, research done within the past five years has developed child-validated measures, or PROs, for use in pediatric oncology.
Between that work and this study, the groundwork has been laid that should allow this to be expanded for children with cancer. As far as other populations, as long as the child measures are validated for whatever the underlying disease is, there is no reason child-reported PROs or self-screening cannot be used. The point of all this is to capture the child’s voice because children know what they are experiencing, whereas adult clinicians tend to underestimate the symptoms and how much they are bothering the child.
Q: What advice would you give to hospital, health system and cancer center leaders who may adopt similar screening initiatives in the future?
DF: The most important advice is for hospital leadership to work collaboratively with the clinicians who are taking care of the patients. They are the experts who know how to integrate these tools into their practice. As well, information technology or informatics departments need to be engaged to manage the electronic data capture and communication in a secure, HIPAA-approved environment.
All of this begins by hospital leadership recognizing that traditional methods for recognizing and treating symptoms in children have fallen short, and that having children be able to self-report improves their comfort and quality of life. That should be a priority for any health system that wants to take care of sick children.
