Objective: To describe outcomes and identify factors that affect social participation in youth and young adults with spina bifida.
Study design: Prospective data from a nationally representative survey of youth and young adults with disabilities were analyzed. The WHO ICF framework was used with participation as the dependent category and (a) body function/structure; (b) activities; (c) personal factors; and (d) environment as independent categories.
Results: A nationally representative sample of 130 youth with spina bifida (mean age 15 years) representing 5171 individuals with spina bifida was followed up for 4 years. The general health of the sample declined over the 4-year study period. Although each outcome using the WHO ICF model had its own pattern of factors that related to it, being Latino or not speaking English at home was negatively associated with each of the outcomes.
Conclusion: The general health of individuals with spina bifida declines during adolescence and early adulthood. Social participation is affected by many factors, and each outcome appears to have its own set of factors that affect it. Future interventions to improve health, well-being, and social participation in adults with spina bifida will need to address factors in all domains.
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