Abstract
PURPOSE: The purpose of this study was to evaluate bladder self-management in transition to adult care for patients with spina bifida (SB) in 3 countries with similar clinical practice and different social, cultural, and economic milieu.
STUDY DESIGN: Cross-sectional study.
SUBJECTS AND SETTING: The sample comprised 90 participants: 27 reside in Brazil, 36 reside in Germany, and 27 reside in the United States. Demographic characteristics of the sample are based on country. The distribution of sex in the Brazilian sample was 18 males and 9 females, the German group had 11 males and 25 females, and the United States group had 8 males and 19 females. The age range of the cumulative sample was 13 to 29 years. The age of the German sample (mean 23.56, standard deviation [SD] 4.60 years) was significantly higher (analysis of variance, F(2, 87) = 13.62, P < .001) than the other 2 groups (Brazil mean 20.56 years, SD 5.24; US mean 19.44 years, SD 4.70).
METHODS: Demographic, clinical, and social variable data were collected via an online questionnaire distributed to multiple regions of Germany and a multidisciplinary myelomeningocele clinic at the University of Michigan in the Midwestern United States. In Brazil, participants completed a printed version of the survey. In Germany and the United States, an electronic version of the survey was made available online. German and English versions of the survey, originally developed in Portuguese for persons residing in Brazil, were translated and validated.
RESULTS: The majority of participants (94.4%) performed intermittent catheterization (IC), 76.5% performed IC independently, whereas 23.5% required assistance with IC or catheterized with aids (handles, leg spreaders, and penis or labia holder). There were no statistically significant group differences in independent self-catheterization by gender. There were significant national group differences in level of lesion (P = .016), use of shunt (P = .012), and medication for bladder management (P < .001). Among participants 18 years and older, there were significantly higher levels of education in the German and the US samples than in the Brazilian sample (P < .001).
CONCLUSIONS: Although there were national group differences in medical characteristics and management of SB, differences in independent self-catheterization were not significant. Findings suggest that support from family/caregivers and health care providers appears to facilitate transition to independent self-care, regardless of national context.