Transition to adult health care for adolescents with spina bifida: research issues

Abstract

The increasing survival of children and young people with congenital disabilities such as spina bifida (SB) provides a challenge to health care systems globally about how best to respond to the multitude of health, developmental, and psychosocial needs of those affected by this complex disorder across the lifespan, not just in childhood and adolescence. The goal of transition to adult health care is to maximize lifelong functioning through the provision of quality, developmentally appropriate health care that continues uninterrupted as the individual moves from adolescence to adulthood. The objective of this article is to outline the type of evidence we have around transition to adult health care in young people with SB, and to identify what additional research evidence would help inform the development of models of clinical care for young adults.