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02.03.2018 | Original Research

Parkinson’s Disease: Patients’ Knowledge, Attitudes, and Interest in Genetic Counseling

verfasst von: Kristin A. Maloney, Dina S. Alaeddin, Rainer von Coelln, Shannan Dixon, Lisa M. Shulman, Katrina Schrader, Yue Guan

Erschienen in: Journal of Genetic Counseling | Ausgabe 5/2018

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Abstract

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score = 26, range = 9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β = 0.6, p < 0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.

Al-Mubarak, B. R., Bohlega, S. A., Alkhairallah, T. S., Magrashi, A. I., AlTurki, M. I., Khalil, D. S., et al. (2015). Parkinson’s disease in Saudi patients: a genetic study. PLoS One, 10(8), e0135950. https://doi.org/10.1371/journal.pone.0135950.CrossRefPubMedPubMedCentral

Berardelli, A., Wenning, G. K., Antonini, A., Berg, D., Bloem, B. R., Bonifati, V., et al. (2013). EFNS/MDS-ES/ENS [corrected] recommendations for the diagnosis of Parkinson’s disease. European Journal of Neurology, 20(1), 16–34. https://doi.org/10.1111/ene.12022.CrossRefPubMed

Bosompra, K., Flynn, B. S., Ashikaga, T., Rairikar, C. J., Worden, J. K., & Solomon, L. J. (2000). Likelihood of undergoing genetic testing for cancer risk: A population-based study. Preventive Medicine, 30(2), 155–166. https://doi.org/10.1006/pmed.1999.0610.CrossRefPubMed

Bunn, J. Y., Bosompra, K., Ashikaga, T., Flynn, B. S., & Worden, J. K. (2002). Factors influencing intention to obtain a genetic test for colon cancer risk: a population-based study. Preventive Medicine, 34(6), 567–577. https://doi.org/10.1006/pmed.2002.1031.CrossRefPubMed

Calsbeek, H., Morren, M., Bensing, J., & Rijken, M. (2007). Knowledge and attitudes towards genetic testing: a two year follow-up study in patients with asthma, diabetes mellitus and cardiovascular disease. Journal of Genetic Counseling, 16(4), 493–504. https://doi.org/10.1007/s10897-006-9085-9.CrossRefPubMedPubMedCentral

Costain, G., Esplen, M. J., Toner, B., Hodgkinson, K. A., & Bassett, A. S. (2014a). Evaluating genetic counseling for family members of individuals with schizophrenia in the molecular age. Schizophrenia Bulletin, 40(1), 88–99. https://doi.org/10.1093/schbul/sbs124.CrossRefPubMed

Costain, G., Esplen, M. J., Toner, B., Scherer, S. W., Meschino, W. S., Hodgkinson, K. A., & Bassett, A. S. (2014b). Evaluating genetic counseling for individuals with schizophrenia in the molecular age. Schizophrenia Bulletin, 40(1), 78–87. https://doi.org/10.1093/schbul/sbs138.CrossRefPubMed

de Lau, L. M., & Breteler, M. M. (2006). Epidemiology of Parkinson’s disease. Lancet Neurology, 5(6), 525–535. https://doi.org/10.1016/S1474-4422(06)70471-9.CrossRefPubMed

Falcone, D. C., Wood, E. M., Xie, S. X., Siderowf, A., & Van Deerlin, V. M. (2011). Genetic testing and Parkinson disease: assessment of patient knowledge, attitudes, and interest. Journal of Genetic Counseling, 20(4), 384–395. https://doi.org/10.1007/s10897-011-9362-0.CrossRefPubMedPubMedCentral

Gasser, T. (2009). Mendelian forms of Parkinson’s disease. Biochimica et Biophysica Acta, 1792(7), 587–596. https://doi.org/10.1016/j.bbadis.2008.12.007.CrossRefPubMed

Gupte, M., Alcalay, R. N., Mejia-Santana, H., Raymond, D., Saunders-Pullman, R., Roos, E., et al. (2015). Interest in genetic testing in Ashkenazi Jewish Parkinson’s disease patients and their unaffected relatives. Journal of Genetic Counseling, 24(2), 238–246. https://doi.org/10.1007/s10897-014-9756-x.CrossRefPubMed

Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., & Willard, H. F. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327–335. https://doi.org/10.1089/gtmb.2012.0350.CrossRefPubMedPubMedCentral

Hann, K. E. J., Freeman, M., Fraser, L., Waller, J., Sanderson, S. C., Rahman, B., et al. (2017). Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review. BMC Public Health, 17(1), 503. https://doi.org/10.1186/s12889-017-4375-8.CrossRefPubMedPubMedCentral

Henneman, L., Vermeulen, E., van El, C. G., Claassen, L., Timmermans, D. R., & Cornel, M. C. (2013). Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010. European Journal of Human Genetics, 21(8), 793–799. https://doi.org/10.1038/ejhg.2012.271.CrossRefPubMed

Hippman, C., Ringrose, A., Inglis, A., Cheek, J., Albert, A. Y., Remick, R., et al. (2016). A pilot randomized clinical trial evaluating the impact of genetic counseling for serious mental illnesses. The Journal of Clinical Psychiatry, 77(2), e190–e198. https://doi.org/10.4088/JCP.14m09710.CrossRefPubMedPubMedCentral

Hoehn, M. M., & Yahr, M. D. (1967). Parkinsonism: onset, progression and mortality. Neurology, 17(5), 427–442.CrossRefPubMed

Jallinoja, P., & Aro, A. R. (1999). Knowledge about genes and heredity among Finns. New Genetics and Society, 18(1), 101–110.CrossRef

Jankovic, J. (2008). Parkinson’s disease: clinical features and diagnosis. Journal of Neurology, Neurosurgery, and Psychiatry, 79(4), 368–376. https://doi.org/10.1136/jnnp.2007.131045.CrossRefPubMed

Kalia, L. V., & Lang, A. E. (2015). Parkinson’s disease. Lancet, 386(9996), 896–912. https://doi.org/10.1016/S0140-6736(14)61393-3.CrossRefPubMed

Kalinderi, K., Bostantjopoulou, S., & Fidani, L. (2016). The genetic background of Parkinson’s disease: current progress and future prospects. Acta Neurologica Scandinavica, 134(5), 314–326. https://doi.org/10.1111/ane.12563.CrossRefPubMed

Lees, A. J., Hardy, J., & Revesz, T. (2009). Parkinson’s disease. Lancet, 373(9680), 2055–2066. https://doi.org/10.1016/S0140-6736(09)60492-X.CrossRefPubMed

Lesage, S., & Brice, A. (2012). Role of mendelian genes in “sporadic” Parkinson’s disease. Parkinsonism & Related Disorders, 18(Suppl 1), S66–S70. https://doi.org/10.1016/S1353-8020(11)70022-0.CrossRef

Moldovan, R., Pintea, S., & Austin, J. (2017). The efficacy of genetic counseling for psychiatric disorders: a meta-analysis. Journal of Genetic Counseling, 26(6), 1341–1347. https://doi.org/10.1007/s10897-017-0113-8.CrossRefPubMed

Nalls, M. A., Pankratz, N., Lill, C. M., Do, C. B., Hernandez, D. G., Saad, M., et al. (2014). Large-scale meta-analysis of genome-wide association data identifies six new risk loci for Parkinson’s disease. Nature Genetics, 46(9), 989–993. https://doi.org/10.1038/ng.3043.CrossRefPubMedPubMedCentral

Nishigaki, M., Tokunaga-Nakawatase, Y., Nishida, J., & Kazuma, K. (2014). The effect of genetic counseling for adult offspring of patients with type 2 diabetes on attitudes toward diabetes and its heredity: a randomized controlled trial. Journal of Genetic Counseling, 23(5), 762–769. https://doi.org/10.1007/s10897-013-9680-5.CrossRefPubMed

Noyce, A. J., Bestwick, J. P., Silveira-Moriyama, L., Hawkes, C. H., Giovannoni, G., Lees, A. J., & Schrag, A. (2012). Meta-analysis of early nonmotor features and risk factors for Parkinson disease. Annals of Neurology, 72(6), 893–901. https://doi.org/10.1002/ana.23687.CrossRefPubMedPubMedCentral

Orr-Urtreger, A., Shifrin, C., Rozovski, U., Rosner, S., Bercovich, D., Gurevich, T., et al. (2007). The LRRK2 G2019S mutation in Ashkenazi Jews with Parkinson disease: is there a gender effect? Neurology, 69(16), 1595–1602. https://doi.org/10.1212/01.wnl.0000277637.33328.d8.CrossRefPubMed

Rybicki, B. A., Johnson, C. C., Peterson, E. L., Kortsha, G. X., & Gorell, J. M. (1999). A family history of Parkinson’s disease and its effect on other PD risk factors. Neuroepidemiology, 18(5), 270–278. https://doi.org/10.1159/000026222.CrossRefPubMed

Sakanaka, K., Waters, C. H., Levy, O. A., Louis, E. D., Chung, W. K., Marder, K. S., & Alcalay, R. N. (2014). Knowledge of and interest in genetic results among Parkinson disease patients and caregivers. Journal of Genetic Counseling, 23(1), 114–120. https://doi.org/10.1007/s10897-013-9618-y.CrossRefPubMed

Scuffham, T. M., McInerny-Leo, A., Ng, S. K., & Mellick, G. (2014). Knowledge and attitudes towards genetic testing in those affected with Parkinson’s disease. Journal of Community Genetics, 5(2), 167–177. https://doi.org/10.1007/s12687-013-0168-7.CrossRefPubMed

Searles Nielsen, S., Bammler, T. K., Gallagher, L. G., Farin, F. M., Longstreth Jr., W., Franklin, G. M., et al. (2013). Genotype and age at Parkinson disease diagnosis. International Journal of Molecular Epidemiology and Genetics, 4(1), 61–69.PubMedPubMedCentral

Sidransky, E., Nalls, M. A., Aasly, J. O., Aharon-Peretz, J., Annesi, G., Barbosa, E. R., Bar-Shira, A., Berg, D., Bras, J., Brice, A., Chen, C. M., Clark, L. N., Condroyer, C., de Marco, E. V., Dürr, A., Eblan, M. J., Fahn, S., Farrer, M. J., Fung, H. C., Gan-Or, Z., Gasser, T., Gershoni-Baruch, R., Giladi, N., Griffith, A., Gurevich, T., Januario, C., Kropp, P., Lang, A. E., Lee-Chen, G. J., Lesage, S., Marder, K., Mata, I. F., Mirelman, A., Mitsui, J., Mizuta, I., Nicoletti, G., Oliveira, C., Ottman, R., Orr-Urtreger, A., Pereira, L. V., Quattrone, A., Rogaeva, E., Rolfs, A., Rosenbaum, H., Rozenberg, R., Samii, A., Samaddar, T., Schulte, C., Sharma, M., Singleton, A., Spitz, M., Tan, E. K., Tayebi, N., Toda, T., Troiano, A. R., Tsuji, S., Wittstock, M., Wolfsberg, T. G., Wu, Y. R., Zabetian, C. P., Zhao, Y., & Ziegler, S. G. (2009). Multicenter analysis of glucocerebrosidase mutations in Parkinson’s disease. The New England Journal of Medicine, 361(17), 1651–1661. https://doi.org/10.1056/NEJMoa0901281.CrossRefPubMedPubMedCentral

Tan, E. K., & Jankovic, J. (2006). Genetic testing in Parkinson disease: promises and pitfalls. Archives of Neurology, 63(9), 1232–1237. https://doi.org/10.1001/archneur.63.9.1232.CrossRefPubMed

Tan, E. K., Lee, J., Hunter, C., Shinawi, L., Fook-Chong, S., & Jankovic, J. (2007). Comparing knowledge and attitudes towards genetic testing in Parkinson’s disease in an American and Asian population. Journal of the Neurological Sciences, 252(2), 113–120. https://doi.org/10.1016/j.jns.2006.10.016.CrossRefPubMed

Uhlmann, W. R., Schuette, J. L., & Yashar, B. (2011). A guide to genetic counseling (pp. 7): John Wiley & sons.

US Census Bureau. (2016). Educational attainment in the United States: 2016 Retrieved January 9, 2018, from https://www.census.gov/data/tables/2016/demo/education-attainment/cps-detailed-tables.html.

Titel: Parkinson’s Disease: Patients’ Knowledge, Attitudes, and Interest in Genetic Counseling
verfasst von: Kristin A. Maloney
Dina S. Alaeddin
Rainer von Coelln
Shannan Dixon
Lisa M. Shulman
Katrina Schrader
Yue Guan
Publikationsdatum: 02.03.2018
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 5/2018
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-018-0239-3

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