Knowledge and Attitudes Toward Genetic Testing in Parkinson’s Disease Dana Lundberg 2006

1. Knowledge and Attitudes Toward Genetic Testing in Parkinson’s DiseaseDana Lundberg 2006

2. Parkinson’s Disease • Is a degenerative neurological disorder • Affects the substantia nigra, the part of the brain that controls movement • Includes three symptoms: • a resting tremor • rigidity • bradykinesia (slowness) Substantia Nigra www.nlm.nih.gov/medlineplus/ency/imagepages/19515.htm

3. Onset Categories • Parkinson’s disease is divided into two onset categories: • Young-onset (less than 50 years at onset) • Old-onset (50 years or older at onset)

4. Objectives To identify attitudes Parkinson’s disease patients have toward diagnostic, predictive, and prenatal genetic testing To identify the resources most used by patients for information on Parkinson’s disease To assess the level of knowledge patients have about the genetics of Parkinson’s disease

5. Genetics of Parkinson’s • Studies by Healy et al. (2004), Toft et al. (2005), and Hattori et al. (2004) revealed several gene mutations • Genes that mutations have been identified in: - parkin - PINK1 - DJ-1 - α-Synuclein - LRKK2 • Clinical genetic testing for the parkin and PINK1 genes is available

6. Rationale • Prior to wide spread use of genetic testing for Parkinson’s disease researchers need to be aware of: • The interest level in genetic testing • The level of knowledge patients have of genetic testing • Where to target educational programs for genetic testing

7. Background • Jacobs et al. showed attitudes toward genetic testing in a young-onset Parkinson’s population: • 72% of subjects indicated that they would take a presymptomatic genetic test • 57% were interested in the availability of a prenatal genetic test for Parkinson’s • My study differs: • It included both young and old-onset patients • It included questions regarding sources of information and knowledge about the genetics of Parkinson’s

8. Hypothesis Patients with Parkinson’s disease will respond with a positive attitude toward diagnostic, predictive, and prenatal genetic testing for the disease.

9. Survey Sites • Struthers Parkinson’s Center (n = 58) • National Parkinson Foundation’s Young-Onset Conference in Phoenix, AZ (n = 39) Struthers Parkinson’s Center (Golden Valley, MN) Young-Onset Parkinson’s Conference (Phoenix, AZ)

10. Survey • Demographics • General knowledge about: • Parkinson’s disease • genetics • genetics of Parkinson’s disease • Sources of information on Parkinson’s disease • Attitudes toward: • diagnostic genetic testing • predictive genetic testing • prenatal genetic testing • genetic testing at 100%, 90%, and 60% genetic risk

11. Data Analysis • Data were tabulated in an Excel spreadsheet • Data were analyzed using descriptive and nonlinear (chi-squared) statistics • P-values were considered significant when p ≤ 0.050

12. Distribution of Age of Onset

13. Distribution of Gender

14. Education Levels of Subject Population 19% 16% 65%

15. Distribution of Subjects with Relatives Diagnosed with Parkinson’s 21% 79%

16. Sources of Information P<0.001

17. Sources of Information P<0.001

18. Sources of Information P<0.001

19. Sources of Information P=0.040

26. Discussion • Overall the attitudes expressed towards diagnostic, predictive, and prenatal genetic testing were positive A majority (≥ 50%) of patients expressed positive attitudes toward diagnostic genetic testing at all three levels of genetic risk Young-onset patients expressed positive attitudes toward predictive genetic testing slightly more, but not significantly more, than old-onset patients at all three levels of genetic risk Young-onset patients expressed positive attitudes toward prenatal genetic testing significantly more than old-onset at the 90% and 60% levels of genetic risk (p = 0.050 for both tests)

27. Discussion • Most commonly used source of information was a neurologist • Young-onset subjects used the internet significantly more than old-onset (p < 0.001) • Young-onset subjects used lay organizations and support groups/conferences significantly more than the old-onset subjects (p < 0.001 for both resources) • a majority of the young-onset subjects were interviewed at a National Parkinson Foundation conference • Young-onset subjects were significantly more knowledgeable about the genetics of Parkinson’s (p < 0.001 and p = 0.005) • Number of patients that correctly answered questions in both the young-onset and, especially, the old-onset groups was low

28. Applications • Educational programmers: • What aspects of Parkinson’s and genetics to focus programs • Where to publish information to best educate the Parkinson’s community about genetic testing • Pharmaceutical companies: • What populations to target for genetic testing • At what levels of genetic risk patients may be interested in taking genetic tests

29. Future Work • Larger subject population through a mailed survey • Redesign survey to include reasons for accepting or rejecting genetic testing • Conduct at a conference oriented toward old-onset or both onset groups

30. Acknowledgements • Dr. Martha Nance • Catherine Wielinski • Ms. Fruen • 2005-06 Research Team

31. Knowledge and Attitudes Toward Genetic Testing in Parkinson’s DiseaseDana Lundberg 2006