Scott Roberts

Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study

PurposeCancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors—YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives.MethodsA random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS’ willingness to contact at-risk relatives.ResultsThe 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS.ConclusionIt is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.

Attitudes, knowledge and intentions about genetic testing among relatives of Italian patients affected by familial dementia: Cross-cultural comparison with Americans

of 27.1. Approximately 50% of the patients were self-referred, 30% were referred by general practitioners, and 20% by other physicians. 37% of the subjects had MCI-type 1, 16% MCI-type 2, 15% type 3, and 32% type 4. Isolated memory impairment was seen in 63% of the subjects, isolated impairment in a non-memory domain in 9%, impairments in multiple domains including memory in 22% of the subjects, impairments in multiple domains excluding memory in 6% of the subjects. Conclusions: One-third of the patients referred to a memory clinic had an MCI-type associated with an high risk for dementia, one-third an MCI-type associated with an intermediate risk for dementia, and one-third an MCI type associated with an low risk for dementia. In the majority of the cases the memory domain was impaired.