Understanding Quality of Life in Patients and Caregivers Affected by Progressive Supranuclear Palsy
Cross-sectional Study of the Factors Determining the Quality of Life of the Patient and the Burden of the Caregiver in Progressive Supranuclear Palsy
This study looks at how progressive supranuclear palsy affects the quality of life for both patients and their caregivers to find ways to improve their care.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Assistance Publique Hopitaux De Marseille Academic / other |
| Locations | 1 site (Marseille, PACA) |
| Trial ID | NCT03638505 on ClinicalTrials.gov |
What this trial studies
This observational study focuses on progressive supranuclear palsy (PSP), a rare neurodegenerative disease that significantly impacts the quality of life of both patients and their caregivers. The primary objective is to identify various determinants affecting the quality of life for PSP patients, including motor, behavioral, socio-economic, and environmental factors. Additionally, the study aims to assess the quality of life and burden experienced by caregivers and to validate a specific quality of life scale for PSP in the French language. By gathering this information, the study seeks to optimize care for those affected by PSP.
Who should consider this trial
Good fit: Ideal candidates include individuals aged 40 and older diagnosed with possible or probable PSP who can participate without severe cognitive impairment.
Not a fit: Patients with other neurological diseases or severe cognitive impairments may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved care strategies that enhance the quality of life for both patients and their caregivers.
How similar studies have performed: While there is limited research specifically on PSP, studies focusing on quality of life in other neurodegenerative diseases have shown promising results.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria (patients) Female or male, age ≥ 40 years at the time of onset of symptoms * diagnosis of possible or probable PSP according to the criteria of Litvan (1996b) * agreeing to participate in the study * subject with no severe cognitive impairment (MMS\> 20/30) * subject who does not have psycho-behavioral comorbidity deemed to be severe enough to make his assessment impossible * subject not presenting a measure of legal protection Exclusion Criteria (patients) * Age \<40 years at the onset of symptoms * Diagnosis other than PSP (including other Parkinsonian syndromes) * Presence of another concomitant neurological disease * subject with severe cognitive impairment (MMS≤20 / 30) * subject presenting psycho-behavioral comorbidities considered sufficiently severe to make it impossible to evaluate * subject under legal protection * subject not affiliated to a social security scheme Inclusion Criteria (caregivers) * Female or male, age ≥ 18 years * designated by the patient as the person closest to him / her * agreeing to participate in the study * subject affiliated to a social security scheme Exclusion Criteria (caregivers) * Age \<18 years * Not designated by the patient as the person closest to him / her * Not agreeing to participate in the study * subject not affiliated to a social security scheme
Where this trial is running
Marseille, PACA
- Assistance Publique Des Hopitaux de Marseille — Marseille, Paca, France (Recruiting)
Study contacts
- Study coordinator: Alexandre Eusebio, Md
- Email: Alexandre.EUSEBIO@ap-hm.fr
- Phone: +33 491384360
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.