Self‐management, preventable conditions and assessment of care among young adults with myelomeningocele

Abstract

In this multicentre cross-sectional study we aimed to identify whether self-management ability and healthcare service delivery factors were related to preventable conditions [urinary tract infections (UTIs), pressure ulcers] and healthcare utilization [emergency room (ER) visits, hospitalizations] specifically in a sample of young adults with myelomeningocele. Spina bifida is one of the most common congenital birth defects, affecting over 166,000 individuals living in the USA. Participants completed a questionnaire comprised of a self-report measure of healthcare services (Patient Assessment of Chronic Illness Care), recent healthcare utilization and preventable medical conditions. A structured clinical interview [Adolescent Self-Management and Independence Scale 2 (AMIS)] was administered to assess self-management. Multiple linear regression models were run to explore individual and combined effects of the AMIS, Patient Assessment of Chronic Illness Care, condition severity variables (shunted hydrocephalus, lesion level) and demographic factors in explaining variability in ER visits, hospitalizations, UTIs and pressure ulcers. Higher number of UTIs were associated with no history of shunting, lower educational levels, higher employment levels and lower AMIS scores (adjusted R(2) = 0.774, P = 0.002). Higher number of ulcers was associated with higher motor level and higher educational level (adjusted R(2) = 0.378, P = 0.017). Higher number of hospitalizations was associated with higher number of wounds and lower AMIS scores (adjusted R(2) = 0.544, P = 0.012). A significant model for ER visits was not identified. Initiatives aimed at improving self-management skills or providing support for skin and bladder care may be warranted for those with high levels of motor impairment or lower educational levels. Better detection of wounds may be seen in those with higher employment levels. Spina bifida is a complex condition, but one whose most prevalent concomitant secondary conditions may be preventable through simple measures that improve self-management and through health educational initiatives targeted to specific patient groups.