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Bringing palliative care for dementia patients into agreement with their wishes and needs: development and evaluation of Decidem


- candidate number24090
- NTR NumberNTR5773
- ISRCTNISRCTN no longer applicable
- Date ISRCTN created
- date ISRCTN requested
- Date Registered NTR8-mrt-2016
- Secondary IDs70-73305-98-420 Zonmw
- Public TitleBringing palliative care for dementia patients into agreement with their wishes and needs: development and evaluation of Decidem
- Scientific TitleBringing palliative care for dementia patients into agreement with their wishes and needs: development and evaluation of Decidem
- ACRONYMDecidem
- hypothesisWhat are the effects of Decidem on the proportion of patients whose needs and wishes are known and respected, on patient and family caregiver outcomes and on healthcare costs?
- Healt Condition(s) or Problem(s) studiedDementia, Primary care, General practitioner, Shared decision making
- Inclusion criteriaDementia diagnosis
In care of a general practitioner
Living at home or in a home for the elderly
65 years old
- Exclusion criteriaNo dementia diagnosis
Not in care of a general practitioner
Not living at home or in a home for the elderly
Younger than 65 years
- mec approval receivedyes
- multicenter trialno
- randomisedyes
- masking/blindingSingle
- controlActive
- group[default]
- Type2 or more arms, randomized
- Studytypeintervention
- planned startdate 1-jan-2016
- planned closingdate31-dec-2016
- Target number of participants150
- InterventionsEducation of the general practitioner (and practice nurse) in advance care planning and shared decision making for community dwelling elderly who live at home or in a home for the elderly
- Primary outcomeThe primary outcome on care level is the proportion of patients whose needs and wishes are known and respected.
- Secondary outcomeQuality of life and depression of the dementia patient
Patients an primary caregivers satisfaction with care of the general practitioner
Burden of the primary caregiver
The general practitioners satisfaction with care of the dementia patient
Quality of life of the dementia patient
Resource utilization of the dementia patient and primary caregiver
Demographics will also be meassured
- Timepointsbaseline meassurments at timepoint 0
Followup meassurments after three months for resource utilazation
End messurments after 6 months
- Trial web site
- statusopen: patient inclusion
- CONTACT FOR PUBLIC QUERIESMSc. M. Vernooij
- CONTACT for SCIENTIFIC QUERIESMSc. M. Vernooij
- Sponsor/Initiator IQ Healthcare, Radboud University Medical Center Nijmegen
- Funding
(Source(s) of Monetary or Material Support)
ZON-MW, The Netherlands Organization for Health Research and Development
- Publications
- Brief summaryPatients with dementia have limited access to palliative care. At the end of their lives, aggressive and unwanted interventions like resuscitation and hospitalization regularly take place. Physical symptoms in patients such as pain or dyspnea and neuropsychiatric symptoms and depression in both patients and family caregivers are often undertreated. This threatens the quality of life of dementia patients and their family caregivers. Palliative care can bring actual care into agreement with patientsí and caregiversí needs and wishes. Therefore an innovative intervention in dementia care combining the strengths of advance care planning (ACP) and shared decision making (SDM) called Decidem will be developed. The research aim of this project is to evaluate its effects on care, patients and caregivers, and costs. We hypothesize that Decidem will bring actual care into agreement with patientsí and caregiversí wishes/preferences and needs. This patient-centered, personalized intervention may increase their satisfaction with care, decrease caregiversí burden and increase quality of life. Decrease of under- and over treatment, of hospitalizations and of unplanned visits may reduce costs.
- Main changes (audit trail)
- RECORD8-mrt-2016 - 25-mei-2016


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