RETURN OF INCIDENTAL FINDINGS IN GENOMIC MEDICINE- MEASURING WHAT PATIENTS VALUE
Author(s)
Bennette CS*1;Trinidad S1;Fullerton SM1;Patrick DL1;Amendola L1;Burke W2;Hisama F1;Jarvik G1;Regier DA3, Veensta DL1 1University of Washington, Seattle, WA, USA, 2University of Washington, Department of Bioethics and Humanities, Seattle, WA, USA, 3BC Cancer Agency Research Centre, Vancouver, BC, Canada
OBJECTIVES: Next generation genomic sequencing is a promising transformative technology; however, little is known about factors that influence patients’ preferences for the return of incidental findings that are likely to be an inevitable aspect of genome sequencing. The objective of this study was to identify the attributes of incidental findings important to patients and develop a discrete choice experiment (DCE) to quantify patient preferences. METHODS: An initial set of key attributes and levels was developed from a literature review and in consultation with experts. The attributes’ salience and comprehension were refined using focus groups (FG) (2 groups, N=12 total) and cognitive interviews (CI) (N=6) with patients who received genetic testing for familial colorectal cancer or polyposis syndromes. The attributes and levels used in the hypothetical choices presented to FG and CI participants were constructed using an orthogonal main-effects experimental design. RESULTS: Overall, we observed a wide range of preferences for genomic sequencing information; however, patients tended to focus on the importance of several consistent attributes in describing their preferences. The final DCE instrument incorporates the following attributes and levels: lifetime risk of developing the disease (5%, 40%, 70%); disease treatability (medical intervention available, lifestyle intervention available, or none); disease severity (mild, moderate, severe); carrier status (yes, no); drug response likelihood (high, moderate, none), and out-of-pocket test cost ($250, $425, $1000, $1900). CONCLUSIONS: Individual patient preferences for incidental genomic findings are likely influenced by a complex set of diverse attributes. This study identified an initial set of important factors, though further research is needed to explore preferences in different settings and to develop effective ways of helping patients and providers understand and address these preferences in the return of incidental findings. Measuring preferences using DCE instruments may facilitate patient-provider communication by quantifying patients’ personal utility for particular attributes of incidental findings.
Conference/Value in Health Info
2013-05, ISPOR 2013, New Orleans, LA, USA
Value in Health, Vol. 16, No. 3 (May 2013)
Code
PCN102
Topic
Patient-Centered Research
Topic Subcategory
Stated Preference & Patient Satisfaction
Disease
Multiple Diseases, Oncology, Rare and Orphan Diseases