Telehealth genetic services increase counseling and testing uptake in childhood cancer survivors
A randomized trial found that remote telehealth genetic services increase uptake of genetic counseling and testing in adult survivors of childhood cancer. At six months, 43% of the telehealth group received services vs. 15% in usual care, with actionable results in 10% of those tested.
Remote telehealth genetic services significantly increased the uptake of genetic counseling and testing among adult survivors of childhood cancer, according to results from a randomized trial published in The Lancet Regional Health – Americas. At six months, 43% of participants assigned to remote telehealth services received genetic services, compared with 15% in the usual care group (odds ratio 4.4). The study is the first national randomized trial to demonstrate that remote telehealth services, working with primary care providers, improve access to genetic counseling and testing for this population.
The trial enrolled 391 participants aged 18 years or older who were survivors of a central nervous system tumor, sarcoma, or more than one primary cancer. After completing a baseline survey, 262 were randomly assigned to remote telehealth genetic services and 129 to usual care. Uptake of genetic counseling reached 42% in the telehealth group versus 15% in usual care, and genetic testing uptake was 19% versus 9%, respectively.
Factors associated with higher uptake included not having high-deductible health insurance (OR 1.67) and lower perceived cost of testing (OR 1.51). Higher levels of depression and anxiety were barriers, with odds ratios of 0.91 and 0.93, respectively.
Among participants who completed genetic testing in the telehealth group, 10% had actionable results, highlighting the intervention's potential impact for survivors and their families. The lead author noted that genetic services can drive earlier detection of subsequent cancer, reducing morbidity and mortality. "Better access to genetic services is critical for improving outcomes in childhood cancer survivors," she stated. "We show that integrating remote genetic services in primary care works well, although more survivors still need to pursue genetic testing." Enhancing motivation for testing may require personalized decision aids, further education, and financial support mechanisms to address concerns about testing costs.
Adult survivors of childhood cancers face an elevated risk of subsequent cancers such as breast, colorectal, sarcomas, and thyroid cancer. While previous cancer therapies are largely responsible, up to 13% of survivors also carry hereditary predispositions that further increase their risk. Several authors disclosed ties to the biopharmaceutical industry.