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 .
Outcome of five years of accelerated surveillance in patients at high risk for inherited breast/ovarian cancer: report of a phase II trial.
OBJECTIVE To assess the outcome of accelerated patient surveillance in patients at high risk for inherited breast or ovarian cancer . METHODS Using stringent inclusion criteria , 57 high-risk patients ( 7 positive for BRCA1/2 mutations , 39 mutation negative , and 11 unaffected ) were recruited from a genetic testing protocol for inherited breast/ovarian cancer and were followed for 5 years ( 192.5 total patient years ) . Patients received twice annual physical examinations , imaging studies , measurement of CA125 and CA15 - 3 , psychometric measurements , and unstructured interviews by a psychologist . RESULTS When mutation ( + ) and mutation ( - ) patients were compared , there were no significant differences in the development of disease metastasis , recurrence , or new cancers . No unaffected patients developed cancer . Management of osteoporosis , sexual function , and psychological distress were major concerns . CONCLUSIONS Our data suggest that all patients with remarkable family history , regardless of their mutation status , may be at substantially increased risk for disease progression and development of new cancers , which is often not ovarian or recurrent breast cancer . Although prophylactic surgery is important in decreasing cancer recurrence in mutation carriers , increased surveillance with physical examinations and psychological support is also valuable and acceptable to such high-risk patients
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 .