Researchers at Baylor College of Medicine and Texas Children’s Cancer Center were awarded more than $7.6 million over four years from NCI to comprehensively study late effects of childhood cancer in a diverse population of childhood cancer survivors, including their medical, neurocognitive, and psychosocial outcomes. In addition, they will evaluate potential educational and sociodemographic barriers to obtaining survivorship care.
In 2021, these researchers received a $2 million award from the NCI to fund the “Survivorship and Access to care for Latinos to Understand and Address Disparities” study.
Pediatric cancer centers across Texas, including Texas Children’s Cancer Center, Vannie Cook Children’s Cancer Clinic, University of Texas Southwestern/Children’s Medical Center of Dallas, Cook Children’s Medical Center, and El Paso Children’s Hospital, enrolled children with cancer in this trial.
The recent award from the NCI will fund ongoing recruitment of childhood cancer survivors and collection of data about their long-term outcomes. In addition, data collection will be expanded to also include results of genotyping and metabolomic profiling studies, as well as clinical, demographic and social determinants of health data.
“We will study how individual children metabolize the chemotherapeutic agents that they receive, since differences in metabolism may impact the incidence of toxic side effects and, in turn, may limit the amount of chemotherapy delivered, ultimately impacting treatment effectiveness and outcomes,” Michael Scheurer, co-principal investigator of the study, professor of pediatrics—hematology and oncology at Baylor, and associate director for excellence in cancer equity at the Dan L Duncan Comprehensive Cancer Center and Sidney L. and Donald F. Faust Chair of Pediatric Cancer Epidemiology at Texas Children’s Hospital, said in a statement. “The information we gather in this study should provide insights into why we sometimes observe worse outcomes in Latino survivors of childhood cancer.”
Lisa Kahalley, co-principal investigator of the study, will lead research on patient-reported experiences, including cognitive, behavioral, and psychosocial outcomes, as well as symptoms related to toxicities and late effects of cancer treatment.
“Because this is a longitudinal study, we will learn when certain issues become apparent or problematic for survivors. That will inform our timing as well as our focus on screening and interventions for childhood cancer survivors,” Kahalley, professor of pediatrics-psychology, associate chief of pediatric psychology research at Baylor, and director of neurobehavioral oncology at Texas Children’s Cancer Center, said in a statement. Kahalley also is a member of the Dan L Duncan Comprehensive Cancer Center at Baylor.
Another aim of the study is to better understand the barriers to survivorship care that Latino patients face, including their preferences for survivor education. Monica Gramatges, co-principal investigator of the study, is leading this component of the research.
As part of the SALUD study, her team conducted a survey of survivors and their caregivers to understand their preferences for content and education modalities. Using feedback from that survey, her team is developing two-minute animated videos that succinctly explain, in both English and Spanish, specific late effects and topics prioritized by survivors and their caregivers. Her team also is collecting patient-reported data on the facilitators and barriers to survivorship care, including focus group discussions to further examine the qualitative factors underscoring these barriers.
“Non-white people are underrepresented in survivorship research,” Gramatges, associate professor of pediatrics-oncology at Baylor and co-director of the Long-Term Survivor Program at Texas Children’s Cancer Center, said in a statement. Gramatges also is a member of the Dan L Duncan Comprehensive Cancer Center at Baylor.
“This NCI grant will allow us to fill a major gap in understanding the experience of Latino survivors of childhood cancer,” Gramatges said. “Our hope is that these results will inform clinical practice guidelines that assess risk and inform screening for late effects of childhood cancer treatment. With input from survivors and their families, our goal is to transform the delivery of education for survivors in a way that will help engage them in long-term follow-up care.”
