2022 PCORI Annual Meeting Breakout Session

Transition to adulthood is a significant and challenging time for youth, especially those with intellectual and developmental disabilities (IDD). Adolescence and young adulthood are marked by changes in social roles and expectations, daily activities and routines, and new responsibilities. People with IDD experience an additional shift in supports and services which are often linked to successful outcomes. Adolescents and transition-age youth with IDD experience rates of unmet needs for health care up to six times higher than others, resulting in poor health and quality of life for themselves and their families. Ensuring both physical and mental health care throughout the transition is core to supporting equitable transitions to adulthood for adolescents and young adults.

This session explores the current PCORI portfolio on transitions to adulthood with IDD, with discussants representing specific projects aimed at identifying stakeholder-driven research into the effectiveness of supports and treatments to improve components of the transitions to adulthood with IDD. Presenters discuss key features of transition research projects along with engagement projects aimed at specific supports.


Shawn Aleong
Undergraduate Student, Fox School of Business, Temple University

Kara Ayers, PhD
Associate Director, Center for Excellence in Developmental Disabilities
Assistant Professor, Department of Pediatrics, University of Cincinnati
Board Member, Patient-Centered Outcomes Research Institute

Kristin Lee Berg, PhD, LSW
Associate Professor, Department of Disability and Human Development
University of Illinois-Chicago

Beth Pfeiffer, PhD, MS
Associate Professor, Department of Health and Rehabilitation Sciences
College of Public Health, Temple University

Micah Peace-Urquilla
Self-Advocate, Educator, and Community Organizer
Research and Training Assistant, National Center for Start Services
Institute on Disability, University of New Hampshire

Sarah Ruiz, PhD
Senior Program Officer, Healthcare Delivery and Disparities Research
Patient-Centered Outcomes Research Institute


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