Accuracy of Reported Family History and Effectiveness of Medical Record Requests in Genetic Counseling for Alzheimer Disease |
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| Authors: | Emily L R Alexander Rachel K Butler Colleen Guimond Blair Butler A Dessa Sadovnick |
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| Institution: | (1) Prenatal Biochemistry Laboratory, Women’s Health Centre of British Columbia, Vancouver, BC, Canada;(2) UBC Clinic for Alzheimer Disease and Related Disorders, University of British Columbia Hospital, Vancouver, BC, Canada;(3) Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC, Canada;(4) Department of Medical Genetics and Division of Neurology, Faculty of Medicine, University of British Columbia, 113-2211 Wesbrook Mall, Vancouver, BC, V6T 2B5, Canada; |
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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. |
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