Pediatric Rehabilitation: 5. Transitioning Teens With Disabilities Into Adulthood

Abstract

This self-directed learning module focuses on preparing adolescent patients with special health care needs for adulthood by promoting their independence in their own self-care; helping them to navigate issues of sexuality, marriage, and parenting; preparing the patient and family to make guardianship decisions during the transition between childhood and adulthood; and planning for higher education or vocation. Emphasis will be on the role of the physiatrist in providing this guidance and its importance in improving the patient's quality of life. It is part of the study guide on pediatric rehabilitation in the Self-Directed Physiatric Education Program for practitioners and trainees in physical medicine and rehabilitation and pediatric medicine. The goal of this article is to refine the learner's knowledge of preparing adolescent patients with special health care needs for adulthood to improve their quality of life.

Transitioning youth to adult healthcare: New tools from The Illinois Transition Care Project

“…Only one provider chose Create and Review Individual Transition Goals. 4 The frequency of each activity suggests its importance and feasibility among participants. Provide a Written Transition Policy, the most commonly selected KCA, may be either the most feasible or the most important for the participating practices.…”

“…Adult-oriented providers also report difficulty obtaining and sorting through transitioning patients' past medical records and note that many young adults lack health management skills [4,5]. Despite efforts over the past decade, most primary care and specialty practices have not adopted the provision of healthcare transition services to their patients as a standard of care [6].…”

“…Due to increased life expectancy, patients with complex childhood conditions have become an emerging population in adult medicine [4,7]. Some pediatric providers (both PCPs and specialists) continue caring for YSHCN well into adulthood due to a shortage of adult-oriented providers willing and able to accept these patients after age 18 [1,5,7].…”

“…Since the primary training of physiatrists is with adults, pediatric physiatrists may manage adults with childhood-onset disabilities, but may have difficulty with care collaboration since many of these patients are developing adult medical condi-tions/concerns but still receive primary care from a pediatric provider. The American Academy of Physical Medicine and Rehabilitation published training on transitioning teens with disabilities to adulthood in 2010 [4], demonstrating the need for improved healthcare transition for physiatry patients.…”

Transition to adult care for children with chronic neurological disorders

“…Rehabilitation programs are typically multidisciplinary, which mirrors the way pediatric care is delivered for many neurological disorders. For patients with physical disabilities, a rehabilitation program may be ideal for transition/transfer, although attention to comorbidities is not guaranteed 36. Again, in Canada these programs tend to be organized on a consultation model so that involvement of the primary care physician is critical.…”