title: Accuracy of reported family history and effectiveness of medical record requests in genetic counseling for Alzheimer disease.
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.
authors.affiliation: Prenatal Biochemistry Laboratory, Women's Health Centre of British Columbia, Vancouver, BC, Canada.
authors.forename: Emily L R
authors.initials: EL
authors.lastname: Alexander
authors.forename: Rachel K
authors.initials: RK
authors.lastname: Butler
authors.forename: Colleen
authors.initials: C
authors.lastname: Guimond
authors.forename: Blair
authors.initials: B
authors.lastname: Butler
authors.forename: A Dessa
authors.initials: AD
authors.lastname: Sadovnick
mesh_terms: D000544:Alzheimer Disease / Q000235:genetics / Q000628:therapy*; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008487:Medical History Taking; D008499:Medical Records