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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Parent-reported barriers and facilitators to accessing care recommended from genomic sequencing in pediatric cancer patients


ELSIcon2022 • Paper • June 3, 2022

Presented by: Blake Vuocolo

Mary Majumder, Jill Robinson, Amanda Gutierrez, Lauren Desrosiers, Sarah Scollon, D. Will Parsons, Sharon Plon, Amy McGuire

Access to genomic medicine has not been well characterized in a pediatric oncology setting, especially for medically underserved populations. Genomic sequencing (GS) results may provide a cancer predisposition diagnosis that often warrants additional cancer screening and specialist visits beyond appointments required for cancer treatment. Moreover, a diagnosis in a pediatric patient can lead to recommended testing or surveillance for other family members. Texas KidsCanSeq is an NIH Clinical Sequencing Evidence-Generating Research consortium project studying implementation of GS in the care of pediatric oncology patients. We examined the barriers and facilitators to accessing genomic medicine, including cascade testing and hereditary cancer surveillance, for families of children diagnosed with a cancer predisposition syndrome by GS. We conducted semi-structured interviews with diverse families (n=20) to explore experiences accessing follow-up care specifically related to their child’s genetic diagnosis. Nine families lived in medically underserved areas as designated by the U.S. government and six were Spanish-preferring. Parents described facilitators to care including living close to medical centers and third-party coordination of resources related to hereditary cancer surveillance. Specific barriers reported by parents in geographically distant regions included traveling expenses/cost and difficulties scheduling their required preventative surveillance in the timeframe they had available to travel. Our findings highlight the importance of logistical convenience and geographic proximity, suggesting a need to increase assistance with coordination of cancer treatment and predisposition surveillance care. Integrating a central contact into cancer treatment teams can help coordinate care for children with cancer predisposition syndromes by streamlining the scheduling of recommended surveillance measures, especially where geographic distance adds to complexity.


Access to genetic screening and therapies

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