Project Summary

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Intellectual and developmental disabilities, or IDDs, can affect how people learn, communicate, and cope with problems. About 40 percent of people with an IDD have a mental health condition that requires treatment. People with IDDs use crisis services, like the emergency room, for mental health care more often than people without IDDs. But these services often don’t meet the needs of people with IDDs or their family caregivers.

A proven crisis prevention model called START can help people with IDDs receive the care they need to avoid mental health crises. START provides:  

  • Assessment to help people with IDDs and their families access effective mental health services
  • Coaching to teach people with IDDs and their families coping skills, ways to prevent crises, and what to do if they need help right away
  • Crisis prevention outreach, such as through home or school visits, to improve coordination of mental health services across care systems
  • 24-hour crisis response from the START team

In this study, the research team is comparing START services delivered in person or by telehealth. Telehealth is a way to provide care to patients using video, internet, or phone. The team is looking to see how well both ways of providing START prevent the use of crisis services and improve patient mental health.

Who can this research help?

Results of this study may help young people with IDDs and their caregivers and care teams when considering ways to deliver mental health and crisis prevention services.

What is the research team doing?

The study has two parts. In the first part, the research team is tailoring START telehealth services for diverse young people with IDDs and their families. The team is asking young people who have received START, their family caregivers, and START staff about their experiences with telehealth services. The team is also adapting a survey on the quality of mental health services so people with IDD can give feedback about their care experience.

In the second part, the research team is recruiting up to 500 people ages 14–35 with IDD across the United States who are newly enrolled in START programs. The team is assigning people by chance to one of two groups. People in the first group receive all four START services in person. People in the second group receive coaching and outreach via telehealth and assessment and 24-hour crisis response in person.

The research team is looking to see how well in-person and telehealth START services work for young people based on traits such as race and type of IDD diagnosis.

Young people with IDDs, caregivers, and mental healthcare providers are helping to plan and conduct this study.

Research methods at a glance

Design Element Description
Design Randomized controlled trial
Population

Phase 1: Up to 50 family caregivers, 50 START recipients, and 50 START staff

Phase 2: 500 young adults ages 14–35 with IDDs who live with a family caregiver 

Interventions/
Comparators
  • START
  • Telehealth START
Outcomes

Primary: emergency services use, family caregiver experiences with mental health care

Secondary: mental health

Timeframe Timeframe Length of follow-up for collecting data on primary outcomes. View Glossary Up to 1-year follow-up for study outcomes 

Project Information

Joan Beasley, PhD, MEd
University of New Hampshire
$4,724,504
Evaluation of Telehealth Services on Mental Health Outcomes for People With Intellectual and Developmental Disabilities

Key Dates

July 2021
December 2027
2021

Study Registration Information

Tags

Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: October 18, 2023