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

Kimberly A. Pyke‐Grimm; Olena M. Vaske; Amy Li; Sheri L. Spunt; Isabel Bjork

doi:10.1002/pbc.31667

journal article Mar 25, 2025

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

Kimberly A. Pyke‐Grimm

Olena M. Vaske Amy Li Sheri L. Spunt

Isabel Bjork

Pediatric Blood & Cancer Vol. 72 No. 6 · Wiley

View at Publisher Save 10.1002/pbc.31667

Abstract

ABSTRACTBackgroundAlthough 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.MethodsA 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.ResultsSeventeen 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).ConclusionsParticipants 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.

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Details

Published: Mar 25, 2025
Vol/Issue: 72(6)
License: View

Authors

K

Kimberly A. Pyke‐Grimm

Department of Nursing Research and Evidence‐Based Practice Center for Professional Excellence and Inquiry Stanford Medicine Children's Health Palo Alto California USA; Division of Hematology Oncology, Stem Cell Transplantation & Regenerative Medicine Department of Pediatrics Stanford School of Medicine Stanford California USA

O

Olena M. Vaske

Department of Molecular, Cell and Developmental Biology, UC Santa Cruz Genomics Institute University of California Santa Cruz California USA

A

Amy Li

Pediatric Oncology Cancer Cell Immunotherapy Stanford University Palo Alto California USA

S

Sheri L. Spunt

Department of Pediatrics Stanford University School of Medicine Stanford California USA

I

Isabel Bjork

Genomics Institute, University of California Santa Cruz, Santa Cruz; Foundation to Advance Vascular Cures Redwood City California USA

Funding

American Association for Cancer Research

Cite This Article

Kimberly A. Pyke‐Grimm, Olena M. Vaske, Amy Li, et al. (2025). Parental and Young Adult Perspectives on Investigative Genomic Tumor Profiling in High‐Risk, Recurrent, or Rare Pediatric Cancers: A Qualitative Study. Pediatric Blood & Cancer, 72(6). https://doi.org/10.1002/pbc.31667

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

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