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1Barn och ungdomsmedicinska kliniken, Universitetssjukhuset i Linköping, Sweden. sven.mattsson@lio.se
Insights
Survival rates for children with spina bifida have significantly improved. Transitioning to adulthood requires better preparation for adolescents and adult medical teams to address their unique lifelong health needs.
Area of Science:
- Pediatric Medicine
- Rehabilitation Medicine
- Public Health
Context:
- Improved survival rates for spina bifida patients over 30 years.
- Increasing numbers of adolescents with spina bifida transitioning to adulthood.
- Current healthcare transition from pediatric habilitation to adult medicine is often inadequate.
Purpose:
- To highlight the growing need for improved transition care for adolescents with spina bifida.
- To emphasize the necessity of preparing both patients and adult medical professionals for this transition.
- To advocate for early and comprehensive preparation to ensure successful lifelong management.
Summary:
- Spina bifida survival has dramatically increased, with 40-50 adolescents reaching adulthood annually in Sweden.
- Pediatric habilitation care ends at age 18, often leaving a gap in adult medical readiness for spina bifida patients' needs.
- Careful preparation for adolescents, parents, and adult medical teams is crucial for successful transition and self-care management.
Impact:
- Ensuring continuity of care for individuals with spina bifida into adulthood.
- Improving the quality of life and self-management skills for young adults with spina bifida.
- Enhancing the capacity of adult healthcare systems to meet the specialized needs of this growing population.
Abstract:
The survival for children with spina bifida has dramatically increased during the last 30 years. In Sweden today 40-50 adolescents with spina bifida are reaching adulthood each year the next 10 years. Children with spina bifida are from birth to adulthood followed by a multidisciplinary medical and paramedical team within the habilitation organisation. However, from the age of 18 this responsibility is discontinued, often with less readiness in adult medicine to meet the spina bifida adolescents and their special needs. Facing adolescence and adulthood both children and parents need a careful preparation from several points of view for the transition. It is also most important to prepare the adult medical disciplines about the special needs of this group. This process has to start early to reach successful management, including improvement in self-care.
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