Telehealth in Lewy Body Dementia

Study Overview
=================
Brief Summary
-----------------
Lewy body dementia (LBD) is the 2nd most common neurodegenerative dementia in the US. Optimal care requires an interdisciplinary approach, however often faced barriers include rural residence, limited access to specialists, travel distance, limited awareness of resources, and physical, cognitive, and behavioral impairments making travel to appointments challenging. Delivering interdisciplinary care remotely using video technology has the potential to improve access to care for patients with LBD.

Detailed Description
-----------------
The purpose of this study is to convert an in-person patient-centric interdisciplinary care model to a virtual platform using stakeholder engagement from individuals with LBD, their caregivers and healthcare providers. Subsequently researchers will conduct a prospective, randomized, controlled pilot study implementing the virtual stakeholder developed interdisciplinary care model (tele-neurohub) for 6 month and assess the implementation outcomes of feasibility, acceptability, and appropriateness of the tele-neurohub model. The research goal is to establish and iteratively improve a virtual interdisciplinary model of care allowing patients with LBD and their caregivers to access sub-specialty care from their home.

Official Title
-----------------
Multi-Stakeholder Engagement for Interdisciplinary Telehealth in Lewy Body Dementia

Conditions
-----------------
Lewy Body Dementia With Behavioral Disturbance, Lewy Body Parkinson Disease, Lewy Body Disease

Intervention / Treatment
-----------------
* Behavioral: Tele-neurohub


Participation Criteria
=================
Eligibility Criteria
-----------------
Participant with Lewy Body Dementia (LBD) Inclusion Criteria: LBD diagnosis by a dementia or movement disorders specialist Clinician-determined mild-moderate dementia severity Internet access with a Zoom-compatible device Caregiver who resides in the patient's home and is willing to participate Fluency in English Healthcare Professional Inclusion Criteria: > 1 year of experience with LBD Willingness to participate in the study Fluency in English

Ages Eligible for Study
-----------------
Minimum Age: 18 Years
Maximum Age: 100 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Design Details

Primary Purpose: Health Services Research
Allocation: Randomized
Intervention Model: Parallel Assignment
Interventional Model Description: tele-neurohub model of care
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Tele-neurohub<br>This group will receive the tele-neurohub intervention which includes telemedicine appointments with the neurologist, speech therapist, social worker, and nutritionist at baseline, 3 months and 6 months, and PT and OT every 2 weeks for maintenance neuro-rehabilitation. | Behavioral: Tele-neurohub<br>* Interdisciplinary care delivered using telemedicine (zoom) technology which includes neurologist, physical, occupational and speech therapy, social worker and dietician.<br>|
| Active Comparator: Usual care group<br>Receive usual care but will have study visit assessments at baseline and 6 months. | Behavioral: Tele-neurohub<br>* Interdisciplinary care delivered using telemedicine (zoom) technology which includes neurologist, physical, occupational and speech therapy, social worker and dietician.<br>|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Number of completed tele-health visits | Feasibility will be determined by completion of at least 75% telehealth visits by the intervention cohort | 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Satisfaction assessed by Patient Assessment of Communication of Telehealth questionnaire. | Acceptability will be determined by at least 80% of dyads reporting being satisfied or highly satisfied on the Patient Assessment of Communication of Telehealth questionnaire. | 6 months | 
| Appropriateness assessed by Intervention Appropriateness Measure | Appropriateness will be determined by the Intervention Appropriateness Measure, higher scores indicate greater appropriateness | 6 months |