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Evaluation of barriers to referral for cancer predisposition syndromes in pediatric oncology patients
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  • Rosemarie Venier,
  • Robin Grubs,
  • Elena Kessler,
  • Kelly Bailey,
  • Julia Meade
Rosemarie Venier
University of Pittsburgh
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Robin Grubs
University of Pittsburgh Graduate School of Public Health
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Elena Kessler
University of Pittsburgh Graduate School of Public Health
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Kelly Bailey
University of Pittsburgh School of Medicine
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Julia Meade
University of Pittsburgh School of Medicine
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Abstract

Background: Cancer predisposition syndromes (CPS) are underdiagnosed in the pediatric population, though the diagnosis of a CPS has important implications for the child and their family. CPS are often diagnosed by geneticists or oncologists with expertise in CPS following a malignancy. This requires a member of the care team, most commonly, the treating oncologist to suspect a CPS and refer the patient for assessment. Procedure: An online survey was distributed to members of the Children’s Oncology Group to elucidate current referral practices and barriers to referral for patients suspected to have a CPS. Results: Of the 189 respondents, 80.4% were pediatric oncologists and most (69%) used formal guidelines to aid in referral assessment. Most respondents indicated they would rarely refer patients with tumors highly associated with CPS. Participants were more likely to refer patients with malignancy and additional features of a CPS than for a specific type of cancer, despite the use of guidelines. Parent knowledge of family history was considered the most challenging barrier to obtaining a family history, though a thorough pedigree was not consistently elicited. Providers indicated the most significant barrier to referral was priority given the patient’s more immediate care needs. Conclusions: Provider education about CPS and creation of clear referral guidelines should increase appropriate referrals. Utilization of a genetic counselor within the pediatric oncology clinic may encourage CPS assessment and enable oncologists to focus on the patient’s immediate care needs.