Utilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial Journal Article


Authors: Anderson, N.; Delavar, A.; Novetsky Friedman, D.; Joseph, V.; Mubdi, N.; Oeffinger, K. C.; Sklar, C. A.; Offit, K.; Matasar, M.; Raghunathan, N.; Antal, Z.; Straus, D.; Walsh, M.; Latham, A.; Tonorezos, E. S.
Article Title: Utilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial
Abstract: We describe utilization of clinical genetic services among survivors of childhood and young adult cancer after participation in a genetic registry. Clinical genetic counselors flagged 162 out of 1069 pedigrees (15.2%) as suggestive of inheritable cancer susceptibility, resulting in 126 (11.8%) referral letters. Following delivery of the referral letters, 19 (15.1%) participants completed clinical genetic counseling, 16 (12.7%) received testing, and four (3.2%) were found to have actionable results. Our results suggest a discordance between reported willingness to undergo genetic counseling and real-world utilization. © 2020, Springer-Verlag GmbH Germany, part of Springer Nature.
Keywords: adolescent; adult; child; leukemia; young adult; major clinical study; cancer risk; follow up; cancer susceptibility; breast cancer; retinoblastoma; childhood cancer; hodgkin disease; cancer survivor; health care utilization; infant; newborn; high risk population; genetic risk; genetic screening; patient referral; genetic testing; genetic counseling; hereditary nonpolyposis colorectal cancer; beckwith wiedemann syndrome; human; male; female; priority journal; article; young adult cancer
Journal Title: Journal of Community Genetics
Volume: 11
Issue: 4
ISSN: 1868-310X
Publisher: Springer  
Date Published: 2020-10-01
Start Page: 501
End Page: 504
Language: English
DOI: 10.1007/s12687-020-00478-0
PROVIDER: scopus
PMCID: PMC7475134
PUBMED: 32676930
DOI/URL:
Notes: Article -- Export Date: 1 October 2020 -- Source: Scopus
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  1. Nidha Zareen Mubdi
    9 Mubdi
  2. Kenneth Offit
    788 Offit
  3. Charles A Sklar
    322 Sklar
  4. Danielle Novetsky Friedman
    110 Friedman
  5. Matthew J Matasar
    289 Matasar
  6. Vijai Joseph
    211 Joseph
  7. David J Straus
    356 Straus
  8. Michael Francis Walsh
    156 Walsh
  9. Zoltan Antal
    19 Antal
  10. Alicia Latham
    58 Latham