Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care

Abstract

Better transition planning through the provision of regular and more detailed information about adult health-care providers and the transition process could reduce anxiety and contribute to a more positive attitude to overcome perceived barriers to transition from young people's perspective. Young people's preferences about transferring to adult health care provide a challenge to those children's hospitals that transfer to adult health care at a younger age.

The neurologist's role in supporting transition to adult health care

“…Before the actual transfer of care, successful transition models have included preliminary visits with the adult provider or joint pediatric-adult transition clinics. [10][11][12]31 Some practices encourage the use of a transition coordinator 11 ; adult primary care providers, especially med-peds physicians, can also serve as valuable resources during the transition process.…”

“…[4][5][6][7] Several models of transition support have been developed and are beginning to be tested, although the available evidence remains insufficient to identify the best models. 5,[8][9][10][11][12] In acknowledgment of this clinical reality, and in response to the 2011 clinical guideline of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians "supporting the healthcare transition from adolescence to adulthood in the medical home," in which specialty providers were called to develop a framework for their population's unique needs, 13 the Child Neurology Foundation convened a multidisciplinary panel of experts in 2014 to develop this guideline. The authors of this consensus statement recognize the current paucity of evidence for successful transition models, and so propose 8 common principles that should be incorporated in any transition model, and which define the child neurologist's role and responsibilities throughout the transition process.…”

Transition from Pediatric Care to Adult Care in Headache Patients

“…The patient should be provided information on goals such as expanding personal knowledge of their disease process, tools for self-management, and basic understanding of their healthcare system [16,17]. Some understanding over health coverage and insurance is also important since having a change in coverage at time of transition hinders the process and lead to poor outcomes [24]. Overall the goal is to promote skills for self-advocacy.…”

“…Major obstacles include understanding how health insurance is involved with choosing a provider, choosing a provider who is a headache specialist versus a general neurologist, not to mention the anxiety related to speaking with an unfamiliar provider. If an adult provider can be identified 1-2 years prior to transition it can reduce the associated stress and anxiety and in such case, the young adult might consider a preliminary visit with an adult provider if needed to allow for a successful transition [24,25].…”

“…Major obstacles include understanding how health insurance is involved with choosing a provider, choosing a provider who is a headache specialist versus a general neurologist, not to mention the anxiety related to speaking with an unfamiliar provider. If an adult provider can be identified 1-2 years prior to transition it can reduce the associated stress and anxiety and in such case, the young adult might consider a preliminary visit with an adult provider if needed to allow for a successful transition [24,25].When the young adult is ready for transition the pediatric provider should have direct communicate with the adult provider and offer to provide a transfer packet regarding the patient's care. An appointment should be scheduled and attended by the young adult, but the pediatric provider is responsible for confirming a successful transition has been made and adult care is establish [16].…”