ABSTRACT
Brain donations are imperative for research; understanding possible barriers to entry is required to improve brain donation rates. While a few surveys have studied attitudes towards brain banking in patients with neurodegenerative disorders, none have surveyed patients with chronic neurological disorders but without neurodegeneration. This cross-sectional study was conducted on 187 participants, with both neurodegenerative (n = 122) and non-neurodegenerative disorders (n = 65), to compare their attitudes and preferences towards brain donation. Encouragingly, patients with non-neurodegenerative disorders were just as likely to consider brain donation as those with neurodegenerative diseases. Approximately half of each group were willing to consider brain donation, and majority of participants across both groups would not be offended if asked to participate in brain donation (71%). Across both groups, altruistic reasons such as desire to advance medical knowledge and benefit to other patients were the main motivating factors for brain donation, while perceived stress for family members, fears of body disfigurement and religious reasons were the main reasons against brain donation. Of note, nearly two-thirds of all participants were agreeable to allow their family to decide on their behalf. Overall, participants with non-neurodegenerative disorders appeared equally likely to consider brain donation as participants with neurodegenerative disorders. This is an important finding as they represent a significant population seen in specialist neurology clinics who may be overlooked in brain donor recruitment and awareness efforts. Healthcare professionals involved in brain banking should consider actively approaching these potential donors and involving their family members in these discussions.
Subject(s)
Brain/pathology , Health Knowledge, Attitudes, Practice , Neurodegenerative Diseases/pathology , Tissue Donors , Aged , Family , Female , Humans , MaleABSTRACT
OBJECTIVE: The success of clinical research and tissue donation programs are highly dependent on recruitment of willing volunteers. A comprehensive survey of patient preferences and attitudes can help identify and address barriers hindering the recruitment for research. METHOD: This is a cross-sectional study on 105 Parkinson's disease patients who completed an interviewer-administered questionnaire. RESULTS: Out of 105 respondents, 48% of patients had either already participated in clinical research or were keen to participate. About 80% believed clinical research to be safe for their health and privacy. More than 70% of participants were willing to donate blood, urine, or stool, while 16% were agreeable for cerebrospinal fluid sample donation. Motivating factors for clinical research included altruism (64%) and contribution to advance medical knowledge (64%). Common reasons for unwillingness towards clinical research included the risks involved (43%), time constraints (33%), and mobility challenges (24%). CONCLUSION: The attitude of Singaporean Parkinson patients toward clinical research and tissue donation is encouraging with about half of the participants willing to support clinical research. Three-quarters of patients would support tissue donations. Participation in research may be further increased with greater patient and public education to overcome misconceptions and also by limiting the demands of studies.
ABSTRACT
Histopathological examination of brain tissue is required for better understanding of neurodegenerative conditions such as Parkinson's disease and related disorders. However, patient willingness remains the greatest hurdle hampering participation in brain donation for research. While there is extensive research being conducted on the subject in West, to the best of our knowledge, there are no studies done in this regard in Asia. This cross-sectional survey was conducted on 105 Parkinson's disease patients to assess their knowledge, beliefs and attitude towards brain donation in an Asian population. The majority of the participants (78%) acknowledged the importance of donation of brain for research, and 70% believed that their donated brain samples would be handled professionally. Fifty percent participants were willing to consider donating their brain for research. Motivating factors for brain donation included altruism (87%) and contribution to advance medical knowledge (80%). Common reasons for unwillingness towards brain donation were stress for family (30%), disfigurement of body (25%), and having a conservative mindset (23%). About one-third of the participants preferred to be approached for brain donation after their first clinic visit. Most patients preferred either their treating neurologists (66%) or research staff (18%) to discuss brain donation with. Participation for brain donation may be increased further with greater patient and public education to overcome misconceptions and change mindsets.