Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities

Intellect Dev Disabil. 2018 Feb;56(1):56-68. doi: 10.1352/1934-9556-56.1.56.


Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.

Keywords: intellectual and developmental disabilities; quality improvement; transition.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, Non-P.H.S.
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Delivery of Health Care / organization & administration*
  • Developmental Disabilities*
  • Health Knowledge, Attitudes, Practice
  • Health Services Accessibility / organization & administration
  • Health Services for Persons with Disabilities / organization & administration
  • Humans
  • Intellectual Disability*
  • Physicians, Primary Care*
  • Surveys and Questionnaires
  • Transition to Adult Care / organization & administration*