In the Netherlands a rapidly increasing number of multidisciplinary memory clinics (MMC) currently diagnose 25% of the patients with dementia. Following the diagnostic work-up, MMCs are increasingly involved in post-diagnosis treatment and coordination of care, which probably is very important for patients and caregivers, but also very time consuming and expensive. This study will focus on the important question whether this complex post-diagnosis treatment and care coordination, evaluated both on effectiveness and costs, should be carried out by MMCs (intervention) or by General Practitioners (GPs) (control) as pivot of delivery of health care for these patients. Objectives: To determine MMCs' effectiveness and cost-effectiveness in post-diagnosis treatment and care-coordination for dementia-patients and their caregivers compared to the post-diagnosis treatment and care coordination by GPs. Time schedule: 12 months for including patients and their caregivers and 12 months of follow-up. Annex Study: Specifically for the Health Technology Assessment (HTA) methodology study the main study will be extended with some experimental proxy measurements and alternative measurement approaches. The objective of this Annex-study is to explore the feasibility and validity of Health Related Quality of Life (HRQL) value measurement in dementia patients. And to study the characteristics of proxy rating in HRQL research in dementia and the suitability and validity of yielding HRQL measurements by proxy assessment. Furthermore to explore the validity, reliability, and feasibility of the EQ5D and EQ6D in dementia research (in patients and in/by proxies); response shift, and alternative (more simple) methods of HRQL measurement and validate the Dutch versions of the QOL-AD and the use of the CarerQol-7D in dementia research.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
HEALTH_SERVICES_RESEARCH
Masking
SINGLE
Enrollment
220
Post-diagnosis treatment and coordination of care for patients with dementia and their informal caregivers delivered by Multidisciplinary Memory Clinics (MMCs)
Post-diagnosis treatment and coordination of care for patients with dementia and their informal caregivers delivered by general practitioners
VU Medical Center, Alzheimer Centre
Amsterdam, Netherlands
Alysis Zorgroep, Rijnstate Hospital, Department of Geriatrics
Arnhem, Netherlands
GGZ Oost Brabant, Department of Geriatrics
Boxmeer, Netherlands
Slingeland Hospital, Department of Geriatrics
Doetinchem, Netherlands
Hospital Gelderse Vallei, Department of Geriatrics
Ede, Netherlands
Catharina hospital, Department of Geriatrics
Eindhoven, Netherlands
Elkerliek Hospital, Department of Geriatrics
Helmond, Netherlands
University Hospital Maastricht, Alzheimer Centre
Maastricht, Netherlands
University Medical Centre St Radboud, Alzheimer Centre
Nijmegen, Netherlands
Proxy-rated Health Related Quality of Life of the patient (cpQol-AD)
Time frame: at 0, 6 and 12 months
Informal caregivers burden (Sense of competence (SCQ))
Time frame: at 0, 6 and 12 months
Cost utility analysis (EQ 5D)
Time frame: at 0, 6 and 12 months
Geriatric Depression Scale (GDS-15)
Time frame: at 0, 6 and 12 months
Care-related quality of life of informal caregivers (CarerQol-7D + CarerQol-VAS)
Time frame: at 0, 6 and 12 months
Quality of Live AD caregiver (cQoL-AD)
Time frame: at 0, 6 and 12 months
Neuro Psychiatric Inventory (NPI-Q)
Time frame: at 0, 6 and 12 months
Functional performance patient (IDDD)
Time frame: at 0, 6 and 12 months
Patients rated Health Related Quality of Life (pQol-AD)
Time frame: at 0, 6 and 12 months
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