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.
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
PREVENTION
Masking
DOUBLE
Enrollment
100
Patients will need to complete questionnaires to establish and evaluate their care pathway.
Caregivers will need to complete questionnaires in order to establish and evaluate the care plan.
Service de Neurologie Cognitive, Comportementale et Mouvement anormaux CHU de Toulouse, Hôpital Pierre Paul Riquet, 31059 Toulouse Cedex 9
Toulouse, France
Evaluate, in newly diagnosed Parkinson's patients, adherence to a new, flexible, and local care pathway after the announcement of the Parkinson's disease.
Percentage of patients who adhere to the program, i.e., who accept the partial or complete program according to their needs
Time frame: 6 months after the inclusion
Evaluation of the flexible and local care pathway based on the patient's medical and psychological parameters.
Responses to the quality of life questionnaire at baseline and 6 months post-inclusion
Time frame: 6 months after the inclusion
Evaluation of the flexible and local care pathway on the well-being of caregivers
Caregiver responses to the quality of life questionnaire at baseline and 6 months post-inclusion
Time frame: 6 months after the inclusion
Evaluation of satisfaction with the flexible and local care pathway
Responses to the satisfaction questionnaire
Time frame: 6 months after the inclusion
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