No registrations found.
ID
Source
Brief title
Health condition
Parkinson’s disease and Parkinsonisms
Sponsors and support
Intervention
Outcome measures
Primary outcome
% patients with documented ACP arrangements
Secondary outcome
- patient‘s symptom burden
- FC’s burden
- patients and their FC experienced quality of life
- care coordination
- quality of (palliative) care
- cost effectiveness of the intervention
Background summary
To determine the effectiveness of a community-based outpatient palliative care intervention for people with Parkinson’s disease and their Family Caregiver (FC) compared to care as usual on Advanced Care Planning (ACP) documentation in the patient’s central file, on patient’s clinical outcomes, on caregiver burden and on costs and service utilization. To test the feasibility of the community-based outpatient palliative care intervention for people with Parkinson’s disease and their FC in six European countries.
Study objective
none
Study design
The active intervention period is 6 months, with a follow-up assessment after 12 months.
Intervention
The intervention consists of a specifically trained (neurology) nurse who provide and coordinate transmural, integrated and proactive palliative care, including Advance Care Planning (ACP)
Inclusion criteria
• Capable to participate;
• Able to provide informed consent;
• Meeting the MDS clinical diagnostic criteria for PD, including Parkinsonisms (Postuma et al., 2015);
• H&Y ≥ 3;
• Progressive deterioration in physical and/or cognitive function despite optimal therapy, according to the primary physician; and
• Availability of a family caregiver or informal caregiver.
Exclusion criteria
• Inability to communicate independently, with or without supportive communication tools.
• Presence of additional chronic medical illnesses which may require palliative services (e.g. metastatic cancer).
• Already receiving palliative care or hospice services.
• Already participating in a clinical study for palliative care.
Design
Recruitment
IPD sharing statement
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| NTR-new | NL8180 |
| Other | METC Radboudumc : SEP-210512305 |