No single vali date d outcome measure encompassed all potential patient benefits from using a CGS .
A variety of different domains were identified , including anxiety and depression , coping , decision-making , distress , family environment , health status , knowledge , mood , perception of risk , perceived personal control , psychological impact , quality of life , satisfaction and expectations , self-esteem , spiritual well-being , and worry .
Some important aspects of patient benefit from CGS are not covered by existing outcome measures .
OBJECTIVE This systematic review aim ed to inform research ers and policymakers about what vali date d outcome measures are available to evaluate clinical genetics services ( CGS ) and the need for new measures .
BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes.
OBJECTIVES To identify predictors of utilization of  breast-ovarian cancer susceptibility ( BRCA1 gene ) testing  and to evaluate outcomes of participation in a testing program . DESIGN Prospect i ve cohort study with baseline interview assessment of predictor variables ( eg , sociodemographic factors , knowledge about hereditary cancer and genetic testing , perceptions of testing benefits , limitations , and risks ) . BRCA1 test results were offered after an education and counseling session in a research setting . Outcome variables ( including depression , functional health status , and prophylactic surgery plans [ follow-up only ] ) were assessed at baseline and 1-month follow-up interviews . PARTICIPANTS Adult male and female members ( n=279 ) of families with BRCA1-linked hereditary breast-ovarian cancer ( HBOC ) . RESULTS Of subjects who completed a baseline interview ( n=192 ) , 60 % requested BRCA1 test results ( 43 % of all study subjects requested results ) . Requests for results were more frequent for persons with health insurance ( odds ration [ OR ] , 3.74 ; 95 % confidence interval [ CI ] , 2.06 - 6.80 ) ; more first-degree relatives affected with breast cancer ( OR , 1.59 ; 95 % CI , 1.16 - 2.16 ) ; more knowledge about BRCA1 testing ( OR , 1.85 ; 95 % CI , 1.36 - 2.50 ) ; and indicating that test benefits are important ( OR , 1.45 ; 95 % CI , 1.13 - 1.86 ) . At follow-up , noncarriers of BRCA1 mutations showed statistically significant reductions in depressive symptoms and functional impairment compared with carriers and nontested individuals . Individuals identified as mutation carriers did not exhibit increases in depression and functional impairment . Among unaffected women with no prior prophylactic surgery , 17 % of carriers ( 2/12 ) intended to have mastectomies and 33 % ( 4/12 ) to have oophorectomies . CONCLUSIONS Only a subset of HBOC family members are likely to request BRCA1 testing when available . Rates of test use may be higher in persons of a higher socioeconomic status and those with more relatives affected with breast cancer . For some high-risk individuals who receive test results in a research setting that includes counseling , there may be psychological benefits . More research is needed to assess the generalizability of these results and evaluate the long-term consequences of BRCA1 testing
No single vali date d outcome measure encompassed all potential patient benefits from using a CGS .
A variety of different domains were identified , including anxiety and depression , coping , decision-making , distress , family environment , health status , knowledge , mood , perception of risk , perceived personal control , psychological impact , quality of life , satisfaction and expectations , self-esteem , spiritual well-being , and worry .
Some important aspects of patient benefit from CGS are not covered by existing outcome measures .
OBJECTIVE This systematic review aim ed to inform research ers and policymakers about what vali date d outcome measures are available to evaluate clinical genetics services ( CGS ) and the need for new measures .