title: Brain donation--what do patients with movement disorders know and how do they feel about it?
abstract: A 30-item self-completed survey was administered to 216 consecutive patients with various movement disorders in order to assess their knowledge base, perceptions, and beliefs about brain donation. Two hundred three surveys were analyzed. While 78% of study participants did not know about brain donation before completing the survey, 56% would be willing to consider brain donation. Willingness to consider brain donation is not significantly different between genders, or influenced by the degree of religious involvement, marital status, or disease duration. Majority of the study participants consider discussions about brain donation appropriate during regular clinic visits. Younger participants were more likely to consider brain donation. Major motivating factors to pursue brain donation were advancement of medical knowledge, providing hope and purpose for others, and advancing our understanding of hereditability of a disorder that may impact surviving family members. We advocate proactive education of patients with various movement disorders about the purpose and benefits of brain donation.
authors.affiliation: Parkinson's Disease and Movement Disorders Center, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA.
authors.forename: Teresa
authors.initials: T
authors.lastname: Kuhta
authors.forename: Cindy
authors.initials: C
authors.lastname: Zadikoff
authors.forename: Tanya
authors.initials: T
authors.lastname: Simuni
authors.forename: Audrey
authors.initials: A
authors.lastname: Martel
authors.forename: Karen
authors.initials: K
authors.lastname: Williams
authors.forename: Aleksandar
authors.initials: A
authors.lastname: Videnovic
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D001921:Brain; D015331:Cohort Studies; D004644:Emotions / Q000502:physiology; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009069:Movement Disorders / Q000523:psychology*; D011795:Surveys and Questionnaires; D014019:Tissue Donors / Q000523:psychology*; D055815:Young Adult