The Patient-centered Outcomes Research Institute (PCORI) has awarded Temple University $7.5 million for a new study comparing approaches to help young adults with intellectual and developmental disabilities learn to use public transportation.
Led by Health and Rehabilitation Sciences Professor Beth Pfeiffer and her research team, the study will compare the outcomes of two approaches to a travel training called Chance to Ride.
Ultimately, Pfeiffer and her team will compare outcomes when this intervention is provided by peer supporters with intellectual and developmental disabilities and when it is provided by professional staff.
“This study is exciting for a lot of reasons,” said Pfeiffer. “Philadelphia is an important area for people to live independently. Community mobility is a barrier for this particular group transitioning to adulthood. There are also a lot of workforce issues and shortages for this population. It’s important to find an effective method in which peer support is used and increased.
“Our hope is that this study can help reduce these barriers and that these individuals will have more independent forms of transportation so that they can live independently and engage with their communities.”
Participants will be randomly assigned to complete Chance to Ride with either a peer supporter or staff member. During this intervention, these young adults will learn skills such as how to read signs, interact with others in the community, prepare for a trip and handle unexpected situations. Then they’ll practice using public transportation with help from the Chance to Ride provider until they can travel more independently.
Before and after completing Chance to Ride, participants will complete assessments about their health, participation and travel skills.
The researchers will also learn what helps or hinders community service organizations from offering Chance to Ride. For this study, eight community service organizations across the U.S. will provide the transportation intervention using peer supporters or professional staff for 300 young adult participants who receive services through these organizations.
In Philadelphia, for example, the researchers are working with Community Integrated Services and JEVS Human Services.
“The College of Public Health is committed to supporting research that bridges critical knowledge with practical solutions,” said Jennifer Ibrahim, the dean of Temple’s College of Public Health. “I’m extremely proud that Beth Pfeiffer’s work embodies this mission. It not only helps youth with disabilities live more independently but also makes a tangible impact by exploring new methods of peer support and engagement to strengthen our communities.”
The research project will be implemented at four sites: Temple University, the University of Florida, the University of Minnesota and the University of New Hampshire. At each university site, the team will look at a range of public transportation availability.
The research team is committed to engaging people with lived experience in all aspects of the project. The study includes a steering committee that is co-led by an experienced peer supporter and autistic researcher and consists of young adults with intellectual and developmental disabilities, parents, and a travel training provider.
Additionally, the advisory council, comprising people with lived experience of an intellectual and developmental disability, family members, providers, clinicians, funders, policymakers, advocacy groups, and content specialists, will provide feedback about the implementation and outcomes of the study so that the findings can help as many people as possible.
“These collaborations enhance both the process and outcomes of this project,” said Jessica Kramer, co-PI and associate professor in the University of Florida College of Public Health and Health Professions’ Department of Occupational Therapy. “Partnering with young adults with intellectual and developmental disabilities and others in the creation of our study design enhances the accessibility, safety and feasibility of the research procedures. And the range of perspectives and lived experiences represented by the team makes it more likely that what we learn from this study will be relevant and meaningful for people’s everyday lives.”
PCORI is the nation’s leading funder of patient-centered comparative clinical effectiveness research, which compares two or more medical treatments, services or health practices to help patients and others make better-informed health and healthcare decisions.
The award has been approved pending completion of PCORI’s business and programmatic review and issuance of a formal award contract.
“This PCORI award is the latest example of the impactful, life-changing research Temple is leading,” said Josh Gladden, the university’s vice president for research. “We look forward to supporting Dr. Pfeiffer and her team as they work to improve the health outcomes of individuals with intellectual and development disabilities.”
Pfeiffer’s research centers on person-environmental interactions in individuals with autism spectrum and mental health disorders or intellectual and developmental disabilities.
Additionally, she teaches courses in the doctorate in occupational therapy program while maintaining her clinical practice in pediatrics.
Pfeiffer feels grateful for the support that Temple and others have provided. “We’re community-focused at this university,” she said. “This research is about serving our community and meeting the needs of the intellectual and developmental disability population surrounding us. We have great staff and structures in place.”