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P1‐405: Attitudes and Knowledge of Clinical Trials to Prevent Autosomal Dominant Alzheimer Disease in Mexico and The U.S.
Author(s) -
Ringman John M.,
Casado Maria,
Agudelo Yaneth Rodriguez,
Matute Esmeralda,
Withers Mellissa
Publication year - 2016
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2016.06.1157
Subject(s) - context (archaeology) , disease , residence , population , medicine , gerontology , psychology , demography , environmental health , pathology , geography , sociology , archaeology
Background: Persons at-risk for autosomal dominant Alzheimer’s disease (ADAD) provide an opportunity to prevent disease by intervening years before symptom onset. Trials of pharmacological interventions in this context are challenging as potential subjects are faced with complex issues when deciding to participate. Such issues are difficult for highly educated persons in industrialized countries and even more challenging for persons not familiar with such matters. We sought to assess attitudes about research and knowledge of ADAD in persons from such families in both rural and urban settings. Methods: 50 persons from families harboring ADAD mutations residing inMexico (n1⁄439) or the U.S. (n1⁄411) completed the Research Attitudes Questionnaire (RAQ) and a Familial Alzheimer’s Disease Genetics Questionnaire (FADGQ). They then heard a presentation on AD, ADAD, and clinical trials and were given the opportunity to ask questions. A subset of subjects (n1⁄444) then completed the questionnaires again. RAQ scores (-14 to + 14, higher scores representing a more positive attitude towards clinical research) and FADGQ scores (0 9, higher scores representing more understanding of ADAD genetics) were compared between subjects living in urban (n1⁄422) vs. rural (n1⁄428) settings by t-tests and scores before and after the presentation were compared by paired t-tests, both in the total population and divided by urban vs. rural residence. Results:At baseline there were no differences between urban and rural inhabitants in their attitudes regarding research but persons living in urban settings scored higher on the FADGQ (6.2 vs. 5.3, p 1⁄4 0.02). Though mean scores on the RAQ (6.4 to 7.4) and FADGQ (5.6 to 5.9) were moved in the direction favoring clinical research and knowledge regarding ADAD, the changes were not significant. When the groups were divided by urban vs. rural settings, there was a greater impact on research attitudes in urban dwellers (5.9 to 7.8, p1⁄4 0.14) and a greater impact on ADAD knowledge in rural inhabitants (5.3 to 5.8, p 1⁄4 0.053). Conclusions: It is essential to educate potential ADAD prevention trial subjects but it requires intense and repetitive interactions with families. Urban residents may benefit more from education regarding trial methodogy and some rural inhabitants from a better understanding of the disease.