Telehealth Expands Genetic Services for Adult Childhood Cancer Survivors

Adult survivors of childhood cancer are at increased risk of developing secondary cancers. A recent study published in Lancet Regional Health – Americas demonstrates that remote telehealth services, integrated with primary care, significantly improve access to vital genetic counseling and testing for these survivors.

Increased Uptake of Genetic Services

Researchers at Ann & Robert H. Lurie Children’s Hospital of Chicago found that offering genetic services through a centralized telehealth platform more than doubled the number of childhood cancer survivors receiving genetic counseling and testing. In a randomized trial involving 391 participants with a mean age of 44, 43% of those utilizing the telehealth services received genetic services within six months, compared to only 15% in the usual care group. Inside Precision Medicine

Identifying Cancer Predisposition

“Identifying survivors with cancer-predisposing genetic variants allows personalized survivorship care with early screenings and preventive measures,” explained Dr. Tara Henderson, MD, MPH, lead author of the study, childhood cancer survivorship expert, and chair of pediatrics at Lurie Children’s Hospital, as well as a professor of pediatrics at Northwestern University Feinberg School of Medicine. The Lancet

Approximately 10% of participants who underwent genetic testing through telehealth were found to have actionable results, indicating a germline cancer predisposition gene such as NF1, TP53, CHEK3, BRCA1/2, or RB1. This allows for targeted surveillance and potential testing for family members. Inside Precision Medicine

Addressing Barriers to Access

Childhood cancer survivors face several barriers to accessing genetic services, including:

• Many receive care from community primary care providers unfamiliar with survivorship guidelines.
• Survivors may be unaware of their long-term cancer risks, particularly if treated years ago.
• Genetic counseling services are often concentrated in academic or cancer centers, limiting access for those in rural or community settings.
• Uncertainty surrounding long-term telehealth reimbursement and the cost of genetic testing pose financial challenges.

The Role of Telehealth and Future Directions

Dr. Henderson emphasizes that telehealth can bridge the gap in access, particularly for survivors in underserved areas. She also highlights the necessitate for policy reforms to expand telehealth coverage and reduce out-of-pocket costs. eCancer

The research team plans to collaborate with advocacy groups to promote coverage for telehealth genetic services and address modifiable barriers through interventions like patient education tools, reminders, emotional support, and mental health integration. They also recognize the potential influence of genetic risk perception, particularly concerns about risks to children, as a motivator for testing.

“Our study demonstrates the value of providing telehealth services in genetic medicine and highlights the importance of advocating for policy reforms to expand telehealth coverage, ensuring that all patients, including those in rural and remote areas, have access to critical services that can’t be adequately provided in their usual or local settings,” said Dr. Henderson. eCancer