The Perfect Storm 9/16/2014. Conflict of Interest Disclosures In relation to this presentation, I declare that there are no conflicts of interest.
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1 Evaluation of the Quality and Literacy of Commercial Non-Invasive Prenatal Test (NIPT) Websites Megan Bell, Debra Roter, Barbara Biesecker Conflict of Interest Disclosures In relation to this presentation, I declare that there are no conflicts of interest. The Perfect Storm 1
2 Explosion of Internet Users Seeking Health Information 80% of internet users look online for health information Many individuals are using this information to guide them in treatment decisions Explosion of NIPT In an 2012 study, women: Obtained knowledge about NIPT from the media. Self-initiated the discussion about NIPT with provider (Yi et al., 2013) Health Literacy More than 1/3 of US adults have limited health literacy Many more have limited genetic literacy. It is important that NIPT information, benefits, and limitations are being presented clearly, accurately, and effectively. 2
3 Methods 4 US based companies offering NIPT Verinata (Verifi) Sequenom (MaterniT21) Ariosa (Harmony) Natera (Panorama) DISCERN-Genetics tool Flesch-Kincaid Reading Level DISCERN-Genetics Purpose Target users Consumers and providers Authors Structure 20 questions based in 5 content areas Each question is rated on a 5 pt. scale Aims of publication The genetic test: procedure and results Reliability of the information Background of condition of interest Implications of the test 1. Are the aims clear? 2. Does it achieve its aims? DISCERN-Genetics Aims of publication 6. Is the nature of the test clear? 7. Is the testing procedure described? The genetic Is Are the other accuracy sources of of test: procedure the support/info test provided? and results 15. explained? Is it clear what sources were 9. Does used? it explain 16. what Is it clear happens when these sources after were the produced? test? Does Is the it info state balanced who and will unbiased? have access 18. to Is the results? local availability of test provided? Reliability of the information Background of condition of interest Implications of the test 3. Is there an explanation of the condition of interest? 4. Are treatment/manage ment options 11. described? Does it provide 5. Is support risk explain for shared in simple decision terms? making? 12. Are discrimination issues discussed? 13. Does it acknowledge psychosocial consequences of testing? 3
4 Results: DISCERN-Genetics 100% 80% 60% 68% 73% 75% 82% Excellent Good Fair 40% Poor 20% Very Poor 0% Verinata Natera Sequenom Ariosa Results: DISCERN-Genetics Average Score Across NIPT Websites Aims of publication Background of condition of interest The genetic test/procedure/results Implications of test Reliability of the information Results: Readability Website Flesch-Kincaid Verinata (Verifi) Grade level: 11.1 Natera (Panorama) Grade level: 10.5 Sequenom (MaterniT21) Grade level: 10.2 Ariosa (Harmony) Grade level: 11.6 All above the recommended 6 th -8 th grade reading level 4
5 Major Disparities and Challenges Explaining the background and management of the conditions being tested for Accuracy and performance data Readability Describing Aneuploidies Only lists conditions with a very broad description Verinata (Verifi) Describing Aneuploidies Description Resources Ariosa (Harmony) 5
6 Accuracy and Performance of Tests False Positive Rate Positive Predictive Value False Negative Rate Specificity Detection Rate Sensitivity Accuracy Accuracy of Tests Only identifies the possibility of False + and False Sequenom (MaterniT21) Accuracy of Tests Gives rates in frequencies Ariosa (Harmony) Defines False Positive and Detection Rate 6
7 Compare Tool Values not defined Swap out comparison Large, similar percentages are not helpful Natera (Panorama) Recommendations for Website Authors Include a description of the tested condition For accuracy information: Define the value that is quoted Provide quantitative information in multiple formats Include possibility for false negatives For literacy level: Use simple sentence structure Include a dictionary of terms to be defined Acknowledgements Debra Roter, Health Literacy Class This research was funded by the NHGRI Intramural Research Program, National Institutes of Health 7
8 Thank You! 8
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