Table 2

Overview of patient and informal caregiver assessments at baseline and follow-up
Outcome measure Operationalization/type of instrument B T3 T12 T24
Clinical data
Demographic data History taking P P P
Cognitive impairment Mini-mental State Examination P P P
Dementia severity Clinical Dementia Rating P P P
Functional disability Disability Assessment for Dementia P P P
Neurological and physical examination Neurological assessment and evaluation of co-morbidities P P P
Neuropsychiatric problems Neuropsychiatric Inventory P P P
Depression Geriatric Depression Scale 15 P P P
Cerebral atrophy and white matter lesions Structural MRI (T1-weighted, T2-weighted and FLAIR) P
Neuropsychological Assessment Rey’s Verbal Learning Test, Visual Association Test, Digit-Span, Letter Digit Substitution Test, Stroop Color-Word Test, Trail Making Test P P P
Quality of life data
Patient generic quality of life EQ-5D I*/P I* I*/P I*/P
Patient disease specific quality of life* QoL-AD I * I * I * I *
Caregiver generic quality of life* EQ-5D I I I I
Caregiver disease specific quality of life* QoL-AD I I I I
Caregiver burden* Sense Of Competence I I I I
Care-related quality of life* Carer Quality of Life I I I I
Cost data*
Resource utilization and caregiver time RUD-Lite I I I I
Work productivity and absence Productivity and Disease Questionnaire I I I I
Consequences of informal caregiving on paid or unpaid work Health and Labour Questionnaire I I I I
Other resource use I I I I
Emerging biomarker data
Functional connectivity Resting state functional MRI P
White matter integrity Diffusion tensor imaging P
Hippocampal volume Structural MRI P
Glucose metabolism Fluorodeoxyglucose PET† P
Amyloid plaque deposition Pittsburgh compound B PET†, CSF Aβ1-42 P
Tau CSF total tau, CSF phosphorylated tau P

*These items were assessed by the informal caregiver by means of a booklet in which several questionnaires were composed for resource consumption and quality of life.

†Data on this item are only collected at the memory clinic of the VU University Medical Centre Amsterdam.

Abbreviations: B, Baseline; FLAIR, Fluid attenuation inversion recovery; I, Information retrieved from informal caregiver; MRI, Magnetic Resonance Imaging; P, Information retrieved from patient; PET, positron emission tomography; QoL-AD, Quality of Life Alzheimer’s Disease scale; RUD-Lite, Resource Utilization In Dementia; T3, 3 month follow-up measurement; T12, 12 month follow-up measurement; T24, 24 month follow-up measurement.

Handels et al.

Handels et al. BMC Neurology 2012 12:72   doi:10.1186/1471-2377-12-72

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