Parental and Young Adult Perspectives on Investigative Genomic Tumor Profiling in High-Risk, Recurrent, or Rare Pediatric Cancers: A Qualitative Study

Abstract

Background: Although research has improved the prognosis of childhood cancer, many challenges remain, especially for high-risk, recurrent, and rare cancers. The recognition that diverse cancer types may share molecular alterations that can be therapeutically targeted has stimulated “precision medicine” approaches in research. Understanding parent and patient interest in genomic-derived therapeutic options in the clinical setting is limited and offers a potential for improved care. Methods: A qualitative study was conducted to explore how young adult (YA) patients and parents of children and adolescent patients regard targeted therapy options. These patients had high-risk, recurrent, or rare cancer for which there was no known curative therapy and were enrolled in a study evaluating investigational genomic tumor profiling. Clinical data were retrieved from medical records, and interviews were conducted. Results: Seventeen participants were interviewed (11 parents and six YA patients). Six themes emerged: (i) Genomic Understanding, (ii) Partnerships in Decision-Making, (iii) Connection with and Trust in Providers, (iv) Quality-of-Life (QOL) Considerations, (v) Understanding of Prognosis, and (vi) Nurturing Hope. Treatment decision-making is complex and depends on the connection (with providers and others), understanding (of prognosis, genomic literacy), care goals (QOL considerations), and planning for the future (hope). Conclusions: Participants favored partnership in decision-making, expressed trust in their providers, and recognized the value of research. Engaging parents and YA patients in the planning of precision medicine translational research may be a path to designing an integrated research and care model that maximizes translational research implemented in real time, leading to improved outcomes.