Background: COSID is a three year, prospective, observational study of 750 patients with dementia, from 31 sites in five Canadian regions. It is examining treatment patterns, disease burden, costs and outcomes.
Objectives: To provide a study description and demographic, economic and clinical characteristics of dementia patients at the time of enrolment in the COSID observational study.
Methods: There are minimal to no protocol mandated interventions (pharmacological, lab or physician visits) to maintain the observational nature of this study. Patients are assessed every 6 months on five key outcome measures: Global Deterioration Scale (GDS), Modified Mini Mental State Exam (3MS), Functional Autonomy Measurement System (SMAF), Neuropsychiatric Inventory (NPI), and Zarit Caregiver Burden Interview (ZBI). This interval was chosen as it approximates the normal treatment pattern for dementia patients. Monthly resource utilization is completed and submitted by caregivers.
Results: Of 757 enrolled patients, mean age at onset of dementia is 73 years (SD 7.6). Overall, 98% are Caucasian and 55% female; 38% completed high school, 31% at least some post secondary and 30% grade school or less; 64% of patients reported an annual household income of less than $45000 (of these 11% reported less than $15000) and 25% reported $45000 or more; 44% have a family history of dementia; and 82% are living at home at the time of registration. The commonest co-morbidities are: hypertension (44% of patients), depressive disorders (22%), osteoarthritis (20%), diabetes (15%) and thyroid hypofunction (14%). 83% of patients are taking a cholinesterase inhibitor at baseline and 17% no cholinesterase inhibitor. Over 83% of the patients present with Alzheimer’s disease (AD); the remainder include Frontotemporal, Lewy Body and Mixed (Vascular/AD) Dementia. At baseline 64% of caregivers report a burden of moderate/severe or above (ZBI >17). Mean baseline burden score is 24.9 (SD 14.3). Mean baseline SMAF is 18.4 (SD 10), NPI 9.6 (SD 11.3) and 3MS 66.4 (SD 16.3). Greater baseline disease severity (GDS) is associated with reduced expectations for the effectiveness of treatment by both caregivers and treating physicians. The majority of caregivers are the patients’ spouse (59%), with 32% their son or daughter and 3% unrelated.
Conclusion: This Canadian study will provide extensive information to increase the understanding of the clinical, social and economic outcomes of dementia patients in real world clinical practice
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