Published in:
01-04-2011 | Original Research
Accuracy of Reported Family History and Effectiveness of Medical Record Requests in Genetic Counseling for Alzheimer Disease
Authors:
Emily L. R. Alexander, Rachel K. Butler, Colleen Guimond, Blair Butler, A. Dessa Sadovnick
Published in:
Journal of Genetic Counseling
|
Issue 2/2011
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Abstract
The University of British Columbia Hospital Clinic for Alzheimer Disease and Related Disorders (UBCH-CARD) invests significant effort to obtain medical records for the confirmation of patient–reported family histories of dementia. The effectiveness of requesting these records was assessed through a review of the 275 requests made by UBCH-CARD genetic counselors during the 24-month period of January 1, 2005–December 31, 2006. The results were categorized according to outcome. Useful medical records were obtained from 92 (33.5%) requests: 77 (28%) records supported, and 15 (5.5%) records did not support, the patient–reported information. An additional 20 (7.5%) requests yielded only vague information. When verification was possible, patient–reported family histories of Alzheimer disease, dementia, or memory loss were accurate in 84% of cases. During the study period, almost 500 h of genetic counselor work time was spent obtaining, reviewing, and following-up on records received. Changes made to UBCH-CARD procedure in response to these findings are discussed.