In-Home Care for Patients With PSP and Related Disorders
NCT03552484 · Status: COMPLETED · Phase: NA · Type: INTERVENTIONAL · Enrollment: 56
Last updated 2024-04-01
Summary
Progressive Supranuclear Palsy and related disorders (PRD) are debilitating, costly, and understudied conditions. Improving access to comprehensive, specialized, in-home patient care offers the potential to minimize the downward spiral of morbidity and preventable healthcare utilization. The aim of this study is to test whether and to what degree an interdisciplinary home visit program will improve patient- and caregiver-reported outcomes, and to identify unmet needs in this population.
Conditions
- Progressive Supranuclear Palsy
- Dementia With Lewy Bodies
- Multiple System Atrophy
- Corticobasal Syndrome
- Atypical Parkinson Disease
Interventions
- BEHAVIORAL
-
Home Visit Program
Informed consent discussion, documentation; UPDRS I-IV, medical history, vitals, medication reconciliation, patient medical history and comorbidities; home safety assessment; psychosocial assessment of dyad, resource utilization questionnaire, caregiver medical history and comorbidities, MCSI; patient and caregiver short MoCA, satisfaction surveys, EQ5D; counseling, summarizing plan of care
- BEHAVIORAL
-
Usual Care/Online Survey
Patients and caregivers, if available, will be asked to complete an online survey that asks about demographics, disease history, resource utilization, and unmet needs. The will be asked to complete a follow-up survey 12 months after completion of the initial survey.
Sponsors & Collaborators
-
Rush University Medical Center
lead OTHER
Principal Investigators
-
Jori Fleisher, MD · Rush University Medical Center
Study Design
- Allocation
- NON_RANDOMIZED
- Purpose
- SUPPORTIVE_CARE
- Masking
- NONE
- Model
- PARALLEL
Eligibility
- Min Age
- 40 Years
- Sex
- ALL
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2018-05-30
- Primary Completion
- 2020-12-31
- Completion
- 2020-12-31
Countries
- United States
Study Locations
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