Parkinson Disease
Conditions
Keywords
care pathway, parkinson, caregiver
Brief summary
Parkinson's disease (PD) is the second most common neurodegenerative disease worldwide, with a prevalence expected to double by 2040. The diagnosis of PD is often a shock for patients and their families, due to a lack of preparation and adequate support. Progress has been made with the establishment of Parkinson's disease expert centers (PDECs) and better-structured care pathways, but limitations remain. The needs of patients, their caregivers, and neurologists at the time of diagnosis were studied, leading to the development of a flexible, adaptable, and multidisciplinary home-based care pathway. This pathway includes multimodal communication tools (booklet and website) and can also be used by caregivers. The aim is to evaluate this pathway at the departmental level and its ability to prevent the medical, social, and psychosocial risks that complicate the care of patients newly diagnosed with PD. Thus, offering the patient, their caregiver and their neurologist a truly flexible and local care pathway built according to their needs, from the moment the disease is announced, could allow for better acceptance of the disease, an improvement in quality of life, the adoption of beneficial practices as well as a patient-caregiver therapeutic alliance with good adherence to drug and non-drug therapies.
Interventions
Patients will need to complete questionnaires to establish and evaluate their care pathway.
OTHERCaregiver questionnaires
Caregivers will need to complete questionnaires in order to establish and evaluate the care plan.
Sponsors
University Hospital, Toulouse
Study design
Allocation
NON_RANDOMIZED
Intervention model
SINGLE_GROUP
Primary purpose
PREVENTION
Masking
DOUBLE (Subject, Caregiver)
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
For patients: * Patients with newly diagnosed Parkinson's disease (\< 1 month) * Over 18 years of age For caregivers (if the caregiver does not wish to participate, the patient can be included): * Primary caregiver of a patient with newly diagnosed Parkinson's disease (\< 1 month) * Over 18 years of age
Exclusion criteria
For patients * Institutionalized patients * Residents of an area not covered by the intervention zone of specialized neurodegenerative disease teams For caregivers \- Participants who do not wish to participate
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Evaluate, in newly diagnosed Parkinson's patients, adherence to a new, flexible, and local care pathway after the announcement of the Parkinson's disease. | 6 months after the inclusion | Percentage of patients who adhere to the program, i.e., who accept the partial or complete program according to their needs |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Evaluation of the flexible and local care pathway based on the patient's medical and psychological parameters. | 6 months after the inclusion | Responses to the quality of life questionnaire at baseline and 6 months post-inclusion |
| Evaluation of the flexible and local care pathway on the well-being of caregivers | 6 months after the inclusion | Caregiver responses to the quality of life questionnaire at baseline and 6 months post-inclusion |
| Evaluation of satisfaction with the flexible and local care pathway | 6 months after the inclusion | Responses to the satisfaction questionnaire |
Countries
France
Contacts
CONTACTFabienne ORY MAGNE, MD
Outcome results
None listed