Trajectories of self‐management and independence in youth with spina bifida: Demographic predictors of growth.

Aim: The purpose of this study was to examine the trajectories of condition and independent living self‐management in youth with spina bifida (SB). Methods: A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS‐II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self‐management and its subscales (condition and independent living) were estimated using linear mixed‐effect models as a function of respondents' demographics. Results: This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty‐seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self‐management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self‐management depended on sex; only males demonstrated increasing growth (β̂ = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self‐management when compared with White (β̂diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino (β̂diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. Conclusion: This study provides evidence of differences in growth of self‐management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self‐management behaviours over time in young adults with SB can identify subgroups in need of further study. [ABSTRACT FROM AUTHOR]