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Accuracy of Reported Family History and Effectiveness of Medical Record Requests in Genetic Counseling for Alzheimer Disease
Author(s) -
Alexander Emily L. R.,
Butler Rachel K.,
Guimond Colleen,
Butler Blair,
Sadovnick A. Dessa
Publication year - 2011
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-010-9330-0
Subject(s) - medical record , genetic counseling , disease , dementia , medicine , family history , family medicine , public health , psychiatry , nursing , surgery , pathology , genetics , biology
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.