More than 70% of childhood cancer survivors receiving follow-up treatment expressed interest in meeting with genetic counselors to better understand cancer predisposition, according to a pilot study conducted at a comprehensive survivorship clinic.
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These findings suggest the feasibility of providing comprehensive genetic counseling to long-term childhood cancer survivors.
Approximately 8% of pediatric cancer patients harbor germline mutations that predispose them to cancer. Few long-term survivors of childhood cancers have received genetic counseling or genetic testing during treatment, as genetic counseling has only become common in recent years.
Shafqat Shah, MD, pediatric hematologist and oncologist at University Health System San Antonio (San Antonio, TX), and colleagues sought to determine whether genetic counseling could be adequately delivered to survivors as part of routine follow-up care.
The survivors, as well as their families, were presented with the option of meeting with a certified genetic counselor during follow-up appointments. Genetic counselors then recommended whether survivors and their families should seek genetic testing to identify inherited mutations. The researchers distributed anonymous surveys by mail to determine the level of satisfaction survivors felt toward the experience.
Prior to study implementation, the researchers observed 38 childhood cancer survivors during routine follow-up visits. Of this cohort, none had previously received genetic counseling, although one survivor’s chart indicated a family history of cancer.
The pilot study included 50 childhood cancer survivors, of whom 34 agreed to meet with a genetic counselor. The remaining 16 survivors declined to meet with a counselor.
Three patients who declined genetic counseling had serious medical conditions requiring treatment. Additionally, two patients who declined counseling had Down’s syndrome, and two additional patients had already received genetic counseling. Reasons for declining were not ascertained for the remaining nine patients.
Three survivors returned satisfaction surveys. All respondents offered high ratings for the experience.
“Further development of this program will focus on educating survivors about cancer predisposition and increasing access to certified genetic counseling services,” Dr Shah said.
