Communication During Genetic Test Disclosure Sessions: Impact on Patient Outcomes

Boston University Medical Campus, Boston MA

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Abstract

DESCRIPTION (provided by applicant): The demand for genetic testing to identify susceptibility to common adult-onset disorders such as heart disease, type 2 diabetes and Alzheimer's disease is rapidly increasing. The availability of trained genetics professionals to assess an individual's risk and to interpret the complex genetic test results is insufficient to meet the growing need;leaving the testing and accompanying counseling to other less knowledgeable healthcare professionals. It is therefore essential that the components of genetic counseling which lead to high quality patient outcomes be identified to enable the development of effective delivery models and appropriate educational programming for healthcare professionals and their patients. Study Objectives: This study addresses four primary aims: 1) to identify the patterns of communication that emerge during the test result disclosure session;2) to assess the short- and long-term effects of communication patterns on patient test related distress, test result information recall, perception of risk and satisfaction with the process, 3) to compare the impact made by the communication process, type of provider or the initial pre- testing counseling session format, and 4) to establish patient and provider characteristics that predict a provider's individual communication style when disclosing genetic test results to patients. Methodology: Alzheimer's disease (AD) serves as an excellent model for exploring genetic testing and counseling communication issues in common complex diseases. The dramatic increase in AD patients and the availability of susceptibility testing is becoming a great concern for the aging population with tremendous economic and public health ramifications. Data from the REVEAL II study (Risk Evaluation and Education for Alzheimer's Disease), a random controlled trial designed to study the effect of genetic susceptibility testing on at-risk adults, provides the opportunity to implement a prospective, longitudinal analysis of the patient/provider communication during the disclosure of genetic test results and determine its effect on long- and short-term patient outcomes. We will use cluster analysis to group patient/provider interactions with similar characteristics into patterns of communication. Multivariate regression models will be developed to evaluate the communication patterns'impacts on patient outcomes as compared to the effects resulting from the initial counseling format or the type of provider disclosing the results. Chi square analyses will allow us to determine whether provider type and initial counseling format influence the types of patterns that emerge during the disclosure session. The findings from this study will help public health policy makers and healthcare providers develop and implement best practices guidelines for the delivery of genetic susceptibility testing and counseling for common adult-onset diseases.