As with other complex conditions, the nature of Spina Bifida and its impact on the individual and family change with age and development. A recent lit-erature review of the health care needs of adults with Spina Bifida highlights the incredible range of health concerns, including both disease specific (e.g., neurological, bladder and bowel functioning, mobility and musculoskeletal function, sexual functioning) as well as generic (e.g., obesity, mental disor-der, skin care, pain) [2]. Whether in relationship to the general principles supporting children and youth with special health care needs, the more specific principles supporting transition to adult health care, or the models of healthcare for young people with complex conditions, a broader require-ment is the developrequire-ment of a framework for monitoring and evaluating both health and life outcomes for people with Spina Bifida. In the United States, the recent development by the Spina Bifida Association of a Spina Bifida Database Registry is a very positive step towards supporting a research and evaluation framework.
Currently, a distinct risk exists for young people with complex health and developmental needs that maturation beyond the purview of specialist pe-diatric services will result in reduced access to developmentally appropriate, quality health care. To date, determined individuals who appreciated the lack of access to future adult health care for their patients and who devel-oped good relationships between themselves and adult colleagues have been largely responsible for the success of most services for adults with develop-mental disability around the world. However, the complexity of contempo-rary health care for young people with Spina Bifida means that more system-atic approaches to the development of adult services and to approaches for supporting the necessary linkages between pediatric and adult services are required. Many children’s hospitals and rehabilitation programs would ben-efit from hospital-wide transition policies to support these tasks. Many parts of the world would equally benefit from regional health planning that would help identify or prioritize the development of developmentally appropriate, accessible, quality health care for young adult with complex disabilities.
A further risk is that the absence of the critical mass that would result from the development of specialist adult services leads to a failure to invest in a research framework for adults with Spina Bifida. Among other things, one might expect that with time, we would have a better understanding of the changing health care needs with age and what models of care might work
best to support the ongoing health care needs of this complex population as they mature. Investment in a training agenda for those who work with ado-lescents and young adults also is required, whether in the pediatric or adult health care settings.
Failure to invest in systematic approaches to monitoring health outcomes, in research, and in clinical training would sadly mean that by the year 2020, we may have no better understanding of how to improve the health and well-being of adults with Spina Bifida than we do today. The health care needs of young people with Spina Bifida do not lessen with age. If anything, the reverse is the case. Investment in more systematic approaches to clinical service development, research and training are required in order to improve both the health and life outcomes of these young people.
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