Considerations in Methods and Timing for Delivery of Genetic Counseling Information to Pediatric Oncology Patients and Families

Li, Kathleen A; Sloat, Lauren M; Kung, Julia; Jung, Jessica; Li, Ashley; Smith, Christina H.; Schratz, Kristen E.; Cooper, Stacy; Pratilas, Christine A.; Frankenfield, Pamela; Bodurtha, Joann

doi:10.1097/mph.0000000000002376

Cited by 3 publications

(1 citation statement)

References 38 publications

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“…In a recent study looking at appropriate timing for genetic counseling information, families indicated they would like to be informed about this information at diagnosis or within 1 to 2 months of the diagnosis. 8 Our study was able to collect information regarding the time it took for a participant to be seen in the CPP after their diagnosis. There were 21 participants who had a genetic evaluation within 2 months of their diagnosis (77.8%) and 6 participants with an evaluation > 2 months (22.2%).…”

Section: Discussionmentioning

confidence: 99%

Assessment of Factors Associated With the Evaluation of Children for Leukemia Predisposition Syndromes: A Retrospective Single-center Study

D'Aquila

Kessler

Cooper

et al. 2023

Journal of Pediatric Hematology/Oncology

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Five to 10% of children with cancer are thought to have a cancer predisposition syndrome (CPS). Referral guidelines for leukemia predisposition syndromes are limited and vague, requiring the treating provider to determine whether patients should have a genetics evaluation. We evaluated referrals to the pediatric cancer predisposition clinic (CPP), the prevalence of CPS in those who elected to pursue germline genetic testing, and assessed for associations between a patient’s medical history and the diagnosis of a CPS. Data were obtained via chart review of children diagnosed with leukemia or myelodysplastic syndrome between November 1, 2017, and November 30, 2021. A total of 22.7% of pediatric leukemia patients were referred for evaluation in the CPP. Of the participants evaluated with germline genetic testing, the prevalence of a CPS was 25%. Our study was able to find a CPS in different malignancies, including acute lymphoblastic leukemia, acute myeloid leukemia, and myelodysplastic syndrome. We did not find associations between a participant with an abnormal CBC before diagnosis or hematology visit and the diagnosis of a CPS. Our study supports that a genetic evaluation should be available to all children with leukemia as medical and family history alone is not predictors of a CPS.

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Section: Discussionmentioning

confidence: 99%

Assessment of Factors Associated With the Evaluation of Children for Leukemia Predisposition Syndromes: A Retrospective Single-center Study

D'Aquila

Kessler

Cooper

et al. 2023

Journal of Pediatric Hematology/Oncology

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Parents’ and patients’ perspectives, experiences, and preferences for germline genetic or genomic testing of children with cancer: A systematic review

Hunter,

Hetherington,

Courtney

et al. 2024

Genetics in Medicine

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Update on Genetic Counselor Practice and Recommendations for Pediatric Cancer Predisposition Evaluation and Surveillance

Zelley,

Schienda,

Gallinger

et al. 2024

Clinical Cancer Research

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In July 2023, the American Association for Cancer Research held the second Childhood Cancer Predisposition Workshop at which international experts in pediatric cancer predisposition met to update the previously published 2017 consensus statements on pediatric cancer predisposition syndromes. Since 2017, advances in tumor and germline genetic testing and increased understanding of cancer predisposition in pediatric cancer patients have led to significant changes in clinical care. Here, we provide an updated genetic counseling framework for pediatric oncology professionals. The framework includes: (1) referral indications and timing; (2) somatic and germline genetic testing options; (3) testing for adult-onset cancer predisposition syndromes in children with and without cancer; (4) evolving genetic counseling models to meet the increased demand for genetic testing; (5) barriers to cancer genetic testing and surveillance in children; and (6) psychosocial and equity considerations regarding cancer genetic testing and surveillance in children. Adaptable genetic counseling services are needed to provide support to pediatric oncology provider teams and diverse patients with pediatric cancer, cancer predisposition, and their families.

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Considerations in Methods and Timing for Delivery of Genetic Counseling Information to Pediatric Oncology Patients and Families

Cited by 3 publications

References 38 publications

Assessment of Factors Associated With the Evaluation of Children for Leukemia Predisposition Syndromes: A Retrospective Single-center Study

Assessment of Factors Associated With the Evaluation of Children for Leukemia Predisposition Syndromes: A Retrospective Single-center Study

Parents’ and patients’ perspectives, experiences, and preferences for germline genetic or genomic testing of children with cancer: A systematic review

Update on Genetic Counselor Practice and Recommendations for Pediatric Cancer Predisposition Evaluation and Surveillance

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