Information-Seeking and Sharing Behavior Following Genomic Testing for Diabetes Risk
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ORIGINAL RESEARCH
Information-Seeking and Sharing Behavior Following Genomic Testing for Diabetes Risk Rachel Mills & Jill Powell & William Barry & Susanne B. Haga
Received: 9 December 2013 / Accepted: 3 June 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor’s office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants’ information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company’s website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p=0.0001). Understanding patients’ interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician’s office. Genetic counselors’ expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.
Keywords Type 2 diabetes . Genomic testing . Information-seeking
R. Mills (*) : J. Powell : W. Barry : S. B. Haga Duke Institute for Genome Sciences & Policy, Duke University, 304 Research Drive, Box 90141, Durham, NC 27708, USA e-mail: [email protected]
Introduction Due to increased patient engagement in health care, information-seeking and sharing have become important components of patients’ experiences. Health information-seeking can improve patient engagement, awareness, and empowerment (Lemire et al. 2008). Patients may seek health information for different reasons and at different stages of care, such as prior to a visit to their health provider to learn about potential causes/diagnoses of a symptom, as well as after a health care visit to better understand their diagnosis, treatments, test results, or follow-up recommended by the provider. The widespread and convenient access to the Internet (Horrigan and Rainie 2002), as well as availability of health information online has made the Internet the top choice of information-seekers (Park et al. 2009; Fox 2011; Fox and Duggan 2013). Several factors may impede patients’ ability to effectively comprehend and apply information found. For example, informati
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