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| ID | Type | Description | Link |
|---|---|---|---|
| ZonMw 80-007022-98-07703 | |||
| ZonMw 945-07-7039 |
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| Name | Class |
|---|---|
| ZonMw: The Netherlands Organisation for Health Research and Development | OTHER |
| Netherlands Alzheimer Foundation | OTHER |
| Amsterdam UMC, location VUmc | OTHER |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 1 | Experimental | Multidisciplinary Memory Clinic |
|
| 2 | Active Comparator | General practitioner |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Multidisciplinary Memory Clinic | Other | Post-diagnosis treatment and coordination of care for patients with dementia and their informal caregivers delivered by Multidisciplinary Memory Clinics (MMCs) |
| Measure | Description | Time Frame |
|---|---|---|
| Proxy-rated Health Related Quality of Life of the patient (cpQol-AD) | at 0, 6 and 12 months | |
| Informal caregivers burden (Sense of competence (SCQ)) | at 0, 6 and 12 months | |
| Cost utility analysis (EQ 5D) | at 0, 6 and 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| Geriatric Depression Scale (GDS-15) | at 0, 6 and 12 months | |
| Care-related quality of life of informal caregivers (CarerQol-7D + CarerQol-VAS) | at 0, 6 and 12 months | |
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Inclusion Criteria:
Exclusion Criteria:
Life expectancy less than 1 year
Living in a nursing home
Already evaluated as being suitable for living in a nursing home
Data collection impossible (e.g., due to severe visual/hearing/language impairment, mood disorder, or behavioral disturbances)
The patient's general practitioner does not agree to participate
Already participating in another study
The patient visits the MMC for a second opinion
Travel distance between MMC and patient's living address more than 50 kilometers
A definite indication for memory clinic follow up:
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| Name | Affiliation | Role |
|---|---|---|
| Prof. Dr. M. Olde Rikkert, MD PhD | University Medical Centre St Radboud, Nijmegen | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| VU Medical Center, Alzheimer Centre | Amsterdam | Netherlands | ||||
| Alysis Zorgroep, Rijnstate Hospital, Department of Geriatrics |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 24282511 | Derived | Meeuwsen E, Melis R, van der Aa G, Goluke-Willemse G, de Leest B, van Raak F, Scholzel-Dorenbos C, Verheijen D, Verhey F, Visser M, Wolfs C, Adang E, Olde Rikkert M. Cost-effectiveness of one year dementia follow-up care by memory clinics or general practitioners: economic evaluation of a randomised controlled trial. PLoS One. 2013 Nov 25;8(11):e79797. doi: 10.1371/journal.pone.0079797. eCollection 2013. | |
| 22589500 |
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| Maastricht University Medical Center |
| OTHER |
| Karolinska Institutet | OTHER |
| Stockholm Health Economics AB | UNKNOWN |
| Slingeland Hospital | OTHER |
| Elkerliek Hospital | OTHER |
| Ggz Oost Brabant | OTHER |
| Rijnstate Hospital | OTHER |
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| General Practitioners | Other | Post-diagnosis treatment and coordination of care for patients with dementia and their informal caregivers delivered by general practitioners |
|
| Quality of Live AD caregiver (cQoL-AD) |
| at 0, 6 and 12 months |
| Neuro Psychiatric Inventory (NPI-Q) | at 0, 6 and 12 months |
| Functional performance patient (IDDD) | at 0, 6 and 12 months |
| Patients rated Health Related Quality of Life (pQol-AD) | at 0, 6 and 12 months |
| 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 |
| Derived |
| Meeuwsen EJ, Melis RJ, Van Der Aa GC, Goluke-Willemse GA, De Leest BJ, Van Raak FH, Scholzel-Dorenbos CJ, Verheijen DC, Verhey FR, Visser MC, Wolfs CA, Adang EM, Olde Rikkert MG. Effectiveness of dementia follow-up care by memory clinics or general practitioners: randomised controlled trial. BMJ. 2012 May 15;344:e3086. doi: 10.1136/bmj.e3086. |
| 19262961 | Derived | Meeuwsen EJ, German P, Melis RJ, Adang EM, Goluke-Willemse GA, Krabbe PF, de Leest BJ, van Raak FH, Scholzel-Dorenbos CJ, Visser MC, Wolfs CA, Vliek S, Rikkert MG. Cost-effectiveness of post-diagnosis treatment in dementia coordinated by Multidisciplinary Memory Clinics in comparison to treatment coordinated by general practitioners: an example of a pragmatic trial. J Nutr Health Aging. 2009 Mar;13(3):242-8. doi: 10.1007/s12603-009-0066-1. |
| ID | Term |
|---|---|
| D003704 | Dementia |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
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| ID | Term |
|---|---|
| D058005 | General Practitioners |
| ID | Term |
|---|---|
| D010820 | Physicians |
| D006282 | Health Personnel |
| D005159 | Health Care Facilities Workforce and Services |
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