Quality of Life of Caregivers and Patients Suffering From Multiple System Atrophy (QUA2-AMS)

  • STATUS
    Recruiting
  • End date
    Jul 1, 2023
  • participants needed
    144
  • sponsor
    University Hospital, Bordeaux
Updated on 25 January 2022
Accepts healthy volunteers

Summary

Multiple system atrophy (MSA) is a rare and fatal neurodegenerative disorder that cause as other neurodegenerative diseases profound declines in functioning and thus, require caregiving for assistance with daily living. The aim of the study is to evaluate the effect of a multimodal intervention as proposed by the NYU Caregiver Counseling and Support Intervention (NYUCI) on the quality of life of patients and their caregivers.

Description

Multiple system atrophy (MSA) is a rare and fatal neurodegenerative disorder, which is characterized by a variable combination of parkinsonism, cerebellar dysfunction, autonomic failure, and additional signs. No effective treatment is available. MSA patients have a poor prognosis with a median survival ranging between 6 and 10 years. MSA as other neurodegenerative diseases cause profound declines in functioning ; thus, many patients require caregivers for assistance with daily living. Caregiving can also be extremely stressful, and many caregivers experience declines in mental health. All of these repercussions contribute to the deterioration of the caregiver's quality of life and they can have an impact on the patient, in particular, on the patient's survival. Improving quality of life is a major element and identifying effective targeted interventions would bring immediate and direct benefit to patients and their families. In this context, it seems that a multimodal intervention as proposed by the NYU Caregiver Counseling and Support Intervention (NYUCI) developed by Mittelman could contribute to improve disease management and better coping with daily living difficulties. The NYUCI strategy combines sessions of individual and family counseling, support group participation, and additional on-call telephone consultations in a flexible counseling approach that is tailored to each caregiving family

Details
Condition Multiple System Atrophy
Treatment Multimodal Intervention
Clinical Study IdentifierNCT04965922
SponsorUniversity Hospital, Bordeaux
Last Modified on25 January 2022

Eligibility

Yes No Not Sure

Inclusion Criteria

Enable to answer to study scales and survey

Exclusion Criteria

Unified Multiple System Atrophy Rating Scale (UMSARS) IV > 4
Absence of at least one close person
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