Knowledge, experiences and attitudes concerning genetics among retinoblastoma survivors and parents.

ABSTRACT: Clinical genetic services are increasingly providing a more nuanced understanding of genetic disease diagnostics and future risk for patients. Effectively conveying genetic information is essential for patients to make informed decisions. This is especially important for survivors of heritable cancers such as retinoblastoma (childhood eye cancer), where survivors who carry a germline mutation in the RB1 gene are at increased risk of second cancers in adulthood, and of passing on the disease risk to future offspring. We conducted focus groups with adult survivors of retinoblastoma and parents of children with retinoblastoma, to uncover their knowledge of, experiences with and attitudes about retinoblastoma genetics and related impacts of the cancer. Results revealed that participants unders

SUBMITTER: Hill JA 

PROVIDER: S-EPMC5891498 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature