Sobocan, Monika; Chandrasekaran, Dhivya; Sideris, Michail; Blyuss, Oleg; Fierheller, Caitlin; Kalra, Ashwin; Sia, Jacqueline; ... Manchanda, Ranjit; + view all Sobocan, Monika; Chandrasekaran, Dhivya; Sideris, Michail; Blyuss, Oleg; Fierheller, Caitlin; Kalra, Ashwin; Sia, Jacqueline; Miller, Rowan E; Mills-Baldock, Tina; Crusz, Shanthini M; Sun, Li; Evans, Olivia; Robbani, Sadiyah; Jenkins, Lucy A; Ahmed, Munaza; Kumar, Ajith; Quigley, Mary; Lockley, Michelle; Faruqi, Asma; Casey, Laura; Brockbank, Elly; Phadnis, Saurabh; Trevisan, Giorgia; Singh, Naveena; Legood, Rosa; Manchanda, Ranjit; - view fewer (2024) Patient decision aids in mainstreaming genetic testing for women with ovarian cancer: A prospective cohort study. BJOG: An International Journal of Obstetrics & Gynaecology , 131 (6) pp. 848-857. 10.1111/1471-0528.17675.

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Abstract

OBJECTIVE: To evaluate patient preference for short (gist) or detailed/extensive decision aids (DA) for genetic testing at ovarian cancer (OC) diagnosis. DESIGN: To evaluate patient preference for short (gist) or detailed/extensive decision aids (DA) for genetic testing at ovarian cancer (OC) diagnosis. 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 OUTCOMES 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.

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