Prevention of Medical, Social, and Psychosocial Risks Following a Parkinson's Disease Diagnosis: A Pilot Study

Обзор

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.

Вмешательства

• Другое Patient questionnaires
  Patients will need to complete questionnaires to establish and evaluate their care pathway.
• Другое Caregiver questionnaires
  Caregivers will need to complete questionnaires in order to establish and evaluate the care plan.

Первичные конечные точки

• Evaluate, in newly diagnosed Parkinson's patients, adherence to a new, flexible, and local care pathway after the announcement of the Parkinson's disease. [Срок оценки: 6 months after the inclusion]

Вторичные конечные точки (3)

• Evaluation of the flexible and local care pathway based on the patient's medical and psychological parameters. [Срок оценки: 6 months after the inclusion]
• Evaluation of the flexible and local care pathway on the well-being of caregivers [Срок оценки: 6 months after the inclusion]
• Evaluation of satisfaction with the flexible and local care pathway [Срок оценки: 6 months after the inclusion]

Критерии участия

Критерии включения

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

Критерии исключения

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

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Да

Дизайн исследования

Распределение

Нерандомизированное

Модель

Одна группа

Маскирование

Двойное слепое

Основная цель

Профилактика

Центры проведения

Франция · 1 центр

• Service de Neurologie Cognitive, Comportementale et Mouvement anormaux CHU de Toulouse, Hô — Toulouse

Идентификаторы

NCT: NCT07578272 · RC31/25/0025 · ID-RCB

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

Открыть это исследование на ClinicalTrials.gov ↗