NCT03552484

In-Home Care for Patients With PSP and Related Disorders

CarePSP: Care Where It Counts - Interdisciplinary Home Visits for PSP-Related Disorders

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 56 (actual)
• Sponsor: Rush University Medical Center · Academic / Other
• Sex: All
• Age: 40 Years
• Healthy volunteers: Accepted

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.

Detailed description

Participants can elect to complete either the Home Visit Arm of the study or the Usual Care Arm of the study. Home Visit Arm: This interdisciplinary home visit program consists of 4 visits to patients' homes over the course of one year from a team of a movement disorders doctor, a nurse, a research coordinator, and a social worker. The team will come to a patient's home and assess the needs of both the patient and caregiver (if present), and connect the patient with any needed services. These visits can replace or be in addition to seeing another movement disorders doctor. Usual Care Arm: The information collected from the home visit participants will be compared to data collected from participants who elect to complete the usual care arm of the study. These participants and their caregivers (if available) will be invited to complete an online version of the survey. They will be contacted 12 months after their initial completion of the survey to complete a follow-up survey.

Conditions

• Progressive Supranuclear Palsy
• Dementia With Lewy Bodies
• Multiple System Atrophy
• Corticobasal Syndrome
• Atypical Parkinson Disease

Interventions

Type	Name	Description
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.

Timeline

• Start date: 2018-05-30
• Primary completion: 2020-12-31
• Completion: 2020-12-31
• First posted: 2018-06-11
• Last updated: 2024-04-01
• Results posted: 2024-04-01

Locations

1 site across 1 country: United States