Parkinson's disease and Parkinson's
Conditions
Interventions
The PDNS intervention will be performed according to the Dutch Guideline on
PDNS care (2015). The intervention is not standardized, but tailored to the
patients* and caregivers* needs. This includes
Sponsors
Radboud Universitair Medisch Centrum
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: 1. Patients with idiopathic Parkinson's disease: - that have sufficient knowledge of the Dutch language; - that were 18 years old at the time of diagnosis; - in all disease stages, regardless of disease severity or disease duration; - who are currently not treated by a Parkinson's disease nurse specialist and who have not been treated by a Parkinson's disease nurse specialist in the past two years; - who have a score of >=18 on the Mini-Mental State Examination (MMSE) and >=12 on the Frontal Assessment Battery (FAB).
Exclusion criteria
Exclusion criteria: 1. Patients with a type of atypical parkinsonism caused by medication (e.g. neuroleptics), a metabolic disorder (e.g. Wilson's disease), encephalitis or a neurodegenerative disorder (e.g. MSA, PSP). 2. Patients with Parkinson's disease that live in a nursing home or another type of residential care facility (because the Parkinson's disease nurse specialist is not operational there). 3. Any other medical or psychiatric disorder that, in the opinion of the researcher, may compromise participation in the study.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The co-primary outcome measures are: - Quality of life measured with the Parkinson's Disease Questionnaire (PDQ-39). - Motor symptoms measured with the Movement Disorders Society-sponsored revision of the Unified Parkinson*s Disease Rating Scale part III (MDS-UPDRS part III) | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary patient-related outcome measures are: - Longitudinal PD symptoms measured with the Movement Disorders Society-sponsored revision of the Unified Parkinson*s Disease Rating Scale Part I, II, IV - Mobility measured with the Timed Up and Go Test (TUG) - Bradykinesia measured with the Pegboard Test - Non-motor symptoms (anxiety and depression) measured with the Hamilton Anxiety and Depression Scale (HADS) - Non motor symptoms (e.g. sleep. cognition, urinary tract problems and constipation) measured with the Scales for Outcomes in Parkinson's Disease - Autonomic questionnaire (SCOPA-AUT) - Health-related quality of life measured with the EuroQoL5D (EQ5D) - Experienced quality of care measured with the Consumer Quality Index (CQI) - Self-management measured with the Patient Activation Measure (PAM) - Medication adherence measured with the Morisky Medication Adherence Scale (MMAS) Secondary caregiver-related outcome measures are: - Health-related quality of life measured with the EuroQoL5D (EQ5D) - Caregiver burden measured with the Zarith Caregiver Burden Index (ZBI) - Caregiver quality of life measured with the CarerQol-7D - Skills of proactive coping measured with the Utrechtse Proactieve Coping Competentielijst (UPCC) To measure healthcare consumption and costs: - Medical consumption of the patient measured with the Medical Consumption Questionnaire. - Productivity loss of working patients measured with the Productivity Cost Questionnaire. - Medical consumption and productivity loss related to caregiver burden measured with a cost questionnaire specifically aimed at caregivers | — |
Countries
Netherlands
Outcome results
None listed