In-Home Care for Patients With PSP and Related Disorders
Progressive Supranuclear Palsy, Dementia With Lewy Bodies, Multiple System Atrophy
About this trial
This is an interventional supportive care trial for Progressive Supranuclear Palsy
Eligibility Criteria
Inclusion Criteria:
- Subjects will be those diagnosed with progressive supranuclear palsy, multiple system atrophy, corticobasal syndrome , Dementia with Lewy Bodies (DLB), or atypical parkinsonism without mention of idiopathic Parkinson's disease.
- Subjects must be English speaking.
Additional Inclusion Criteria For the Home Care Arm:
- Each subject must either 1) be willing and able to provide written, informed consent for the study, and for whom capacity to consent will be assessed, or 2) if unable to provide informed consent due to lack of capacity, a caregiver is able to provide informed consent and the subject provides assent to participation.
- Subjects must be homebound according to the Medicare definition: "Leaving your home isn't recommended because of your condition; your condition keeps you from leaving home without help (such as using a wheelchair or walker, needing special transportation, or getting help from another person); leaving home takes a considerable and taxing effort." (http://www.medicare.gov/pubs/pdf/10969.pdf)
- Subjects reside in Chicago at the time of Visit 1.
- The Subject must reside independently at the time of Visit 1.
- Subjects have one or more of the following criteria: fluctuation, multi-morbidity, mismanages medication, cognitive impairment, symptoms of depression and/or anxiety, high risk for re-hospitalization, high risk for nursing facility admission, suspected elder abuse, recent history of increased falls in home, caregiver burnout suspected
- Ability to participate in the research study as deemed by the Principal Investigator.
Additional Inclusion Criteria For the Usual Care Arm:
- Independent access to an internet-connected computer in order to complete online survey
- Valid email address
- Each subject must review and acknowledge their ability to provide informed consent for the study via the first screen of the online survey
Exclusion Criteria:
- Diagnosis of idiopathic Parkinson's Disease
- Diagnosis of another neurodegenerative disease
- Subjects with active psychosis or exhibiting symptoms of a severe psychiatric disorder
Sites / Locations
- Rush University Medical Center
Arms of the Study
Arm 1
Arm 2
Active Comparator
Active Comparator
Home Visit Arm
Usual Care Arm
Participants and their caregivers, when available, will be asked to participate in four study visits, which will involve in-home clinical assessments, a needs assessment, and completion of some questionnaires. Additional information will be obtained from patients' routine medical records: their medical and medication history, family history, neurological examination findings, and office visit records. [Completion of Home Visit Program]
Participants and their caregivers, when available, will be asked to complete an initial online survey. Twelve months later, patients (and caregivers, if available) will be asked to complete an online follow-up survey. [Completion of Usual Care/Online Survey]