Youth with spina bifida and transitions: using the WHO ICF model in a nationally representative sample

Youth with spina bifida and transitions: using the WHO ICF model in a nationally representative sample
GS LIPTAK MD MPH, NP DOSA MD MPH, J KENNEDYBS Pediatrics, Upstate Medical University, Syracuse, NY, USA

Background/Objectives: The WHO international classification of functioning, disability, and health (ICF) model of functioning and disability can provide insights into the health and well-being of individuals. To our knowledge it has not been used to evaluate transitions in youth with disabilities.
Design: Cohort study.
Participants and Setting: A nationally representative sample of 129 youth with spina bifida representing 5171 individuals was followed for 3 years.
Materials/Methods: Data from the National Longitudinal Transition Study 2 (NLTS2) were analyzed. This is an ongoing survey of youth and young adults in the USA who were classified by their school districts. Logistic regression was used for multi-factor analyses.
Results: The mean age at entry was 15.3 years with 44% females; 19% were Latino and 16% were African American; 26% were below the poverty level and 19% were diagnosed with ADHD. 21% had difficulty using their hands or arms; 20% of females and 14% of males had ever had sexual intercourse; 32% who had excellent or very good health at the first interview reported fair or poor health 3 years later. For 97% of the participants their school had not planned for what the youth would do after high school. By the end of the third year, only 30% had a driver’s license/permit and 62% were registered to vote. Compared to youth with asthma, cerebral palsy, and learning disabilities, youth with spina bifida had the lowest behavioral risk score and the least amount of reported school behavior problems. The WHO ICF model was used with Participation as the dependent category and (a) body function/structure,(b) activities, (c)personal factors and (d)environment as independent categories for several analyses. For example, visiting with friends and going out on dates was significantly (P<0.001) associated with the following variables [odds ratio]: (a)upper extremity problems [0.09] &taking prescriptions [0.66], (b)having hobbies and special interests [1.88] & having communication problems [0.11], (c) being latino [5.66], and (d) language other than English spoken in home [1.88].
Conclusions/Significance: These data provide insights into the factors that affect the participation of youth with spina bifida during their transition years, and should ultimately lead to interventions that could improve these transitions.

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