Patient decision aids in mainstreaming genetic testing for women with ovarian cancer: A prospective cohort study
Abstract
Objective
To evaluate patient preference for short (gist) or detailed/extensive decision aids (DA) for genetic testing at ovarian cancer (OC) diagnosis.
Design
Cohort study set within recruitment to the Systematic Genetic Testing for Personalised Ovarian Cancer Therapy (SIGNPOST) study (ISRCTN: 16988857).
Setting
North‐East London Cancer Network (NELCN) population.
Population/Sample
Women with high‐grade non‐mucinous epithelial OC.
Methods
A more detailed DA was developed using patient and stakeholder input following the principles/methodology of IPDAS (International Patients Decision Aids Standards). Unselected patients attending oncology clinics evaluated both a pre‐existing short and a new long DA version and then underwent mainstreaming genetic testing by a cancer clinician. Appropriate inferential descriptive and regression analyses were undertaken.
Main outcome measures
Satisfaction, readability, understanding, emotional well‐being and preference for long/short DA.
Results
The mean age of patients was 66 years (interquartile range 11), and 85% were White British ethnicity. Of the participants, 74% found DAs helpful/useful in decision‐making. Women reported higher levels of satisfaction (86% versus 58%, p < 0.001), right amount of information provided (76.79% versus49.12%, p < 0.001) and improved understanding (p < 0.001) with the long DA compared with the short DA. There was no statistically significant difference in emotional outcomes (feeling worried/concerned/reassured/upset) between ‘short’ and ‘long’ DA; 74% of patients preferred the long DA and 24% the short DA. Patients undergoing treatment (correlation coefficient (coef) = 0.603; 95% CI 0.165–1.041, p = 0.007), those with recurrence (coef = 0.493; 95% CI 0.065–0.92, p = 0.024) and older women (coef = 0.042; 95% CI 0.017–0.066, p = 0.001) preferred the short DA. Ethnicity did not affect outcomes or overall preference for long/short DA.
Conclusions
A longer DA in OC patients has higher satisfaction without increasing emotional distress. Older women and those undergoing treatment/recurrence prefer less extensive information, whereas those in remission preferred a longer DA.