Adult outcomes and lifespan issues for people with childhood‐onset physical disability

Abstract

This paper aimed to discuss functioning, quality of life, (QoL) and lifespan care issues of adolescents and young adults with childhood‐onset physical disability from a clinical, scientific, and personal perspective. We present a résumé of results of recently performed studies in rehabilitation‐based samples of (young) adults with childhood‐onset conditions such as cerebral palsy (CP) and spina bifida (SB), and different models of transition and lifespan care. The studies showed that many young adults with a childhood‐onset disability experience health‐related problems such as functional deterioration, pain or fatigue, and an inactive lifestyle. A significant number are restricted in participation in work, housing, and intimate relationships. They perceive a lower health‐related and global QoL compared with a reference group. In some centres in the UK and the Netherlands specialized outpatient services are available or being developed. In conclusion, transition to adulthood is a critical phase for reaching autonomous participation in adult life. There is an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood‐onset disability.