none
ID
Bron
Verkorte titel
Aandoening
Parkinson’s disease and Parkinsonisms
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
% patients with documented ACP arrangements
Achtergrond van het onderzoek
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.
Doel van het onderzoek
none
Onderzoeksopzet
The active intervention period is 6 months, with a follow-up assessment after 12 months.
Onderzoeksproduct en/of interventie
The intervention consists of a specifically trained (neurology) nurse who provide and coordinate transmural, integrated and proactive palliative care, including Advance Care Planning (ACP)
Publiek
Wetenschappelijk
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
• 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.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
• 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.
Opzet
Deelname
Voornemen beschikbaar stellen Individuele Patiënten Data (IPD)
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Geen registraties gevonden.
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL8180 |
| Ander register | METC Radboudumc : SEP-210512305 |