Balancing Transparency & Anxiety: Pediatric Oncology Post-CURES Rule

Those coping with cancer often say that the waiting—for results of tests, scans, and treatments—can be one of the hardest parts of the journey. However, a recently published multi-institution study, led by Yale researchers, found that faster results can be a “double-edged sword” in pediatric oncology.

It has been nearly five years since the 21st Century Cures Act got a final rule mandating that patients have immediate access to all information in their electronic health record. Yet, there has been limited research into how the law has affected the cancer care experience for children, adolescents, and young adults with cancer, their caregivers, and clinicians.

“We pursued this study because we got the sense that the law was having a tremendous impact on cancer care broadly. We wanted to hear directly from patients, families, and clinicians about how the Cures Act may be altering care in pediatric oncology,” says the study’s senior author Prasanna Ananth, MD, MPH, who is an associate professor of pediatrics (oncology and hematology) at Yale School of Medicine, and a pediatric hematologist/oncologist as well as a leading researcher in the field.

Study researchers interviewed 32 parents of children with cancer; 25 adolescents and young adults with cancer (aged 16 to 25 years); and 27 pediatric oncology clinicians. Participants were recruited from three National Cancer Institute-designated Comprehensive Cancer Centers: Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, St. Jude Children’s Research Hospital, and Yale Cancer Center/Smilow Cancer Hospital.

The study found that the 84 people interviewed touched on many of the same themes, citing both advantages and disadvantages of the law in effect since 2021. For example, interviewees noted an increase in patient and family knowledge of their cancer treatment and a sense of empowerment. Sometimes, immediate access to information in the electronic health record worsened anxiety, but patient and families generally expressed a willingness to tolerate anxiety in favor of greater transparency around results and increased trust in their health care team.

Clinicians interviewed during the study reported that communication patterns have shifted. They said that parents and patients more often arrive at appointments with questions informed by the results they read in their records and their own research, allowing more time during appointments for joint decision-making. Clinicians also said that immediate access to information meant that patients and parents often have information—and questions—before the clinician has had a chance to review the results.

More than half of clinicians interviewed said there has been a marked increase in results-related calls and electronic messages, at times after work hours, asking for help interpreting results. Clinicians expressed concern about how this increase in communications could contribute to burnout.

“In general, participants felt that there are many benefits to immediate access to information in the electronic health record. However, prompt release of sensitive or high-stakes health information does pose some risks,” Ananth says. “To mitigate these risks, participants suggested a number of changes to the current approach to immediate release of health information.

“One suggestion was to enable patients and families to self-curate which information would be released immediately. Another suggestion was to include a glossary or layperson summary of clinical notes, for easier interpretation. A third suggestion was to automatically delay release of particularly sensitive results, to give clinicians a chance to review first.”