Needs Assessment in a Spina Bifida Program: A Comparison of the Perceptions by Adolescents With Spina Bifida and Their Parents

The primary purpose of this study was to describe and compare medical, psychosocial, and economic needs of adolescents and young adults with a neural tube defect and their parents. A secondary aim of the study was to establish the psychometric properties of a previously published needs assessment tool. Forty-nine adolescent and 59 parents receiving services from a comprehensive spina bifida program at a large children’s hospital completed a needs assessment survey designed to measure perceived needs for health and social services. The Needs Assessment Questionnaire includes 8 subscales (Accessibility/Transportation/Independence, Financial Concerns, Medical Resources, Communication/Acceptance of individuals with spina bifida, Family/Socialization, Education of others regarding spina bifida, School Services, and Vocational Training). Factors related to perceived needs and differences between adolescents and parents were explored. There was a significant difference (P < .05) between parents and adolescents in 6 of the 8 subscales. On the remaining 2 subscales, differences between parents and adolescents approached significance. In all areas of needs for services, parents were less satisfied with the delivery of services and reported that needs were not being met. A significant negative correlation between age of the adolescent and perceived needs related to Transportation/Independence (r = −0.35) and School Services (r = −0.31) was found. Parents with more than a high school education perceived significantly greater needs for Vocational Training than those with less education (r = −2.1, P = .04). Identification of medical, psychosocial, and economic needs of adolescents with a neural tube defect and their families has implications for quality improvement and program development.