title: Retention of African American women in cancer genetics research.
abstract: Although retention is a critical component of longitudinal cancer genetics research, limited empirical data are available on predictors of study retention among populations that are difficult to enroll. We evaluated predictors of retention in cancer genetics research among African American women at increased risk for having a BRCA1 and BRCA2 (BRCA1/2) mutation. Participants were African American women (n = 192) at increased risk for hereditary breast-ovarian cancer who were enrolled in a longitudinal genetic counseling research study. Retention was evaluated separately for the 1- and 6-month follow-ups and in terms of overall retention (e.g., completion of both telephone interviews). Seventy-three percent of women and 65% of women were retained at the 1- and 6-month follow-ups respectively; in terms of overall retention, 60% of women were retained in both follow-up telephone interviews. Predictors of retention at 1-month included being employed (OR = 2.47, 95% CI = 1.24, 4.93, P = 0.01) whereas predictors of overall retention included having a personal history of breast and/or ovarian cancer (OR = 2.06, 95% CI = 1.07, 3.95, P = 0.03) and having completed genetic counseling (OR = 2.63, 95% CI = 1.39, 4.98, P = 0.003). These data suggest that once enrolled in genetic counseling research, the majority of African American women will continue to participate, especially if concrete clinical services are provided.
authors: Department of Psychiatry, Abramson Cancer Center, and the Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA. chanita@mail.med.upenn.edu
authors: Chanita Hughes
authors: CH
authors: Halbert
authors: Deja
authors: D
authors: Love
authors: Tynisha
authors: T
authors: Mayes
authors: Aliya
authors: A
authors: Collier
authors: Benita
authors: B
authors: Weathers
authors: Lisa
authors: L
authors: Kessler
authors: Jill
authors: J
authors: Stopfer
authors: Deborah
authors: D
authors: Bowen
authors: Susan
authors: S
authors: Domchek
mesh_terms: D001741:Black or African American / Q000235:genetics* / Q000523:psychology*; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000453:epidemiology / Q000235:genetics / Q000523:psychology*; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D016015:Logistic Models; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology*; D012153:Retention, Psychology; D012307:Risk Factors