Objective: To assess knowledge & attitude of Indian patients with movement disorders and their caregivers to understand their readiness for genetic testing.

Background: Genetic testing is commonly advised to patients with movement disorders with hope of providing tailored care. While many patients and caregivers are enthusiastic to undergo testing, little is known regarding factors that separate them from the less enthusiastic individuals.

Method: Patients of movement disorders (suspected to have an underlying genetic basis) and their caregivers, were subject to previously validated, structured questionnaires[1-5]. This was administered as a one-on-one interview to help assess individual knowledge and perception of genetic testing.

Results: Over a period of 10 months, 30 patients and 33 caregivers were enrolled. The average age of the cohort was 45.4 ± 12.9 yrs, male: female ratio was 1.42 and 54.7% were graduates in various fields. Family history of a movement disorder was present in 46.9%. The commonest clinical diagnosis were Parkinson’s disease(79.4%), chorea and dystonia (11.1%). Out of total score of 10, caregivers had a higher total knowledge score(6.1) compared to patients(7.6). Questions related to basics of genetics, genetic basis of disease were answered correctly (70.1%), those relating to the costs and procedures were least correctly answered questions (55.9%).Factors that positively influenced knowledge scores were higher education(p < 0.001), caregiver status(p = 0.003), later age at onset(p=0.013) and physician as a source of information(p=0.006).

Prevention of disease in next generation and finding cure were underlying motivation for positive attitudes and correlated with total scores in knowledge subsection. Negative attitudes were because of higher costs and test inaccuracy. The current age, gender, education status, patient or caregiver status, family history, MoCA score and self-perceived knowledge of genetics did not positively or negatively influence attitudes for genetic testing.

Conclusion: Indian patients and caregivers of patients with movement disorders are moderately informed regarding genetic basis of their disease & have a positive attitude towards genetic testing when adequately informed regarding the procedure. Themes of genetic counselling should revolve around cure, risk of recurrence while simultaneously addressing myths of availability, costs and test inaccuracies

References: 1. Tan EK, Lee J, Hunter C, Shinawi L, Fook-Chong S, Jankovic J. Comparing knowledge and attitudes towards genetic testing in Parkinson’s disease in an American and Asian population. J Neurol Sci. 2007;252(2):113-120. doi:10.1016/j.jns.2006.10.016
2. Falcone DC, Wood EMC, Xie SX, Siderowf A, Van Deerlin VM. Genetic testing and Parkinson disease: Assessment of patient knowledge, attitudes, and interest. J Genet Couns. 2011;20(4):384-395. doi:10.1007/s10897-011-9362-0
3. Maloney KA, Alaeddin DS, von Coelln R, et al. Parkinson’s Disease: Patients’ Knowledge, Attitudes, and Interest in Genetic Counseling. J Genet Couns. 2018;27(5):1200-1209. doi:10.1007/s10897-018-0239-3
4. Gupte M, Alcalay RN, Mejia-Santana H, et al. Interest in Genetic Testing in Ashkenazi Jewish Parkinson’s Disease Patients and Their Unaffected Relatives. J Genet Couns. 2015;24(2):238-246. doi:10.1007/s10897-014-9756-x
5. Sakanaka K, Waters CH, Levy OA, et al. Knowledge of and interest in genetic results among Parkinson disease patients and caregivers. J Genet Couns. 2014;23(1):114-120. doi:10.1007/s10897-013-9618-y

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MDS Abstracts - https://www.mdsabstracts.org/abstract/readiness-for-genetic-testing-among-indian-movement-disorder-patientsa-tertiary-centre-experience/