TY - JOUR
T1 - Considerations in Methods and Timing for Delivery of Genetic Counseling Information to Pediatric Oncology Patients and Families
AU - Li, Kathleen A.
AU - Sloat, Lauren M.
AU - Kung, Julia
AU - Jung, Jessica
AU - Li, Ashley
AU - Smith, Christy H.
AU - Schratz, Kristen E.
AU - Cooper, Stacy L.
AU - Pratilas, Christine A.
AU - Frankenfield, Pamela
AU - Bodurtha, Joann
N1 - Publisher Copyright:
© 2022 Lippincott Williams and Wilkins. All rights reserved.
PY - 2022/8/1
Y1 - 2022/8/1
N2 - Many pediatric oncology patients and their families may benefit from genetic counseling and testing; however, identifying the best timing and delivery method for these referrals is sometimes a challenge. The goal of this study was to understand how and when caregivers prefer to receive information about genetic counseling and testing. A total of 56 surveys completed by caregivers at The Johns Hopkins Hospital Pediatric Oncology unit in Baltimore, Maryland were analyzed. A sizeable subset of respondents was interested in receiving information about the availability of genetic counseling from an oncology doctor or nurse, but not a genetic counselor (n=13/55, 24%). Most respondents preferred to be informed about genetic services at diagnosis (n=28/54, 52%) or within 1 to 2 months of diagnosis (n=14/54, 26%). In conclusion, patients and their families may benefit from prompt and early recognition of the risk of cancer predisposition syndromes, preferably within the first 2 months following diagnosis. Oncology professionals are an important source of information, and can introduce the availability of genetic counseling services and motivate families to undergo genetic testing, though alternative communication methods such as brochures may also be useful.
AB - Many pediatric oncology patients and their families may benefit from genetic counseling and testing; however, identifying the best timing and delivery method for these referrals is sometimes a challenge. The goal of this study was to understand how and when caregivers prefer to receive information about genetic counseling and testing. A total of 56 surveys completed by caregivers at The Johns Hopkins Hospital Pediatric Oncology unit in Baltimore, Maryland were analyzed. A sizeable subset of respondents was interested in receiving information about the availability of genetic counseling from an oncology doctor or nurse, but not a genetic counselor (n=13/55, 24%). Most respondents preferred to be informed about genetic services at diagnosis (n=28/54, 52%) or within 1 to 2 months of diagnosis (n=14/54, 26%). In conclusion, patients and their families may benefit from prompt and early recognition of the risk of cancer predisposition syndromes, preferably within the first 2 months following diagnosis. Oncology professionals are an important source of information, and can introduce the availability of genetic counseling services and motivate families to undergo genetic testing, though alternative communication methods such as brochures may also be useful.
KW - cancer predisposition syndromes
KW - genetic counseling
KW - genetic testing
KW - pediatric cancer
UR - http://www.scopus.com/inward/record.url?scp=85122811907&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85122811907&partnerID=8YFLogxK
U2 - 10.1097/MPH.0000000000002376
DO - 10.1097/MPH.0000000000002376
M3 - Article
C2 - 34966100
AN - SCOPUS:85122811907
SN - 1077-4114
VL - 44
SP - 313
EP - 317
JO - Journal of Pediatric Hematology/Oncology
JF - Journal of Pediatric Hematology/Oncology
IS - 6
ER -