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.

Prospective prediction of functional difficulties among recently separated Veterans

“…For all young adults, achieving financial independence and successful employment is critical to reaching autonomous participation in adult life. The inability to achieve such independence is considered a risk for functional problems throughout the life span (e.g., [28][29]). …”

Adults With Chronic Health Conditions Originating in Childhood: Inpatient Experience in Children's Hospitals

“…Cerebral palsy is among the most challenging of conditions, because it is even more heterogeneous, often with complex comorbidities and developmental disabilities not typically treated in adultoriented environments. 10,34 Children's hospitals rarely have the comprehensive resources and expertise necessary for care of conditions acquired in adulthood. Their physical facilities and supplies are not designed for adults, personnel tend to be less well-trained in adult care, and ancillary services that support adults, such as for job placement, are often lacking.…”

Health Care Transition Experiences of Young Adults With Cerebral Palsy

“…Transition to adulthood is a critical phase for reaching autonomous participation in adult life. Providers should incorporate a lifespan perspective in pediatric, transition, and adult health care services for persons with a childhood-onset disability (Roebroeck, Jahnsen, Carona, Kent, & Chamberlain, 2009).…”