Longitudinal Trajectories of Clean Intermittent Catheterization Responsibility in Youth with Spina Bifida
David I. Chu, MD, MSCE1, Mariam Kayle, PhD, RN, CCNS2, Alexa Stern, MA3, Diana K. Bowen, MD1, Elizabeth B. Yerkes, MD1, Grayson N. Holmbeck, PhD4.
1Division of Urology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA, 2School of Nursing, Duke University, Durham, NC, USA, 3Section of Pediatric Psychology, Rush University Medical Center, Chicago, IL, USA, 4Department of Psychology, Loyola University Chicago, Chicago, IL, USA.
Background
Clean intermittent catheterization (CIC) responsibility among youth with spina bifida is not well-studied and yet is important for self-care, quality of life, and eventual independent living. We sought to determine longitudinal trajectories of CIC responsibility to examine the transition of CIC responsibility from caregiver- to self-CIC. We also assessed predictors of trajectory group membership, hypothesizing that a child’s cognitive level would be associated with a higher-rising trajectory group.
Methods
We performed a secondary analysis of a prospective cohort study of youth with spina bifida. Participants ages 8-15 years old originally recruited from four hospitals and a statewide spina bifida association were followed every 2 years. Participants who required CIC were included. Group-based trajectory modeling was used to isolate distinct trajectories of CIC responsibility, which was the primary outcome and was graded from caregiver-CIC to shared-CIC to self-CIC. Predictors of trajectory group membership were entered into multivariate logistic regression models and included various demographic, clinical, and psychosocial characteristics, including CIC adherence and CIC mastery.
Results
Of 140 youth in the original cohort study, 100 used CIC and 89 met eligibility criteria for this study. Mean age was 11 years old at enrollment; 93% had myelomeningocele. Two distinct trajectory groups emerged: 17% had a low-flat trajectory, and 83% had a high-increasing trajectory of CIC responsibility, with shared-CIC by age 8-9 years old and increasing self-CIC responsibility thereafter. Significant predictors of group membership in the high-increasing trajectory group included less severe spinal lesion levels, higher CIC mastery, and lower CIC adherence. Cognitive level by intelligence quotient, type of spina bifida, shunt status, number of shunt revisions, gross and fine motor function, adaptive function, and measures of managing time and punctuality were not significantly associated with trajectory group membership.
Conclusions
Nearly 1 in 5 youth with spina bifida in our cohort persistently required caregiver-CIC over time, while the remainder achieved shared-CIC responsibility by age 8-9 years old with increasing self-CIC responsibility thereafter.
Table. Multivariate Logistic regression Analysis Predicting Catheterization Responsibility Trajectory Group Membership (high-increasing vs. low)
| Variable | Odds Ratio | 95% CI | p-value |
| Catheterization Mastery | 1.055 | 1.016-1.095 | 0.003 |
| Catheterization Adherence | 0.059 | 0.005-0.648 | 0.004 |
| Child Lesion level | 0.009 | ||
| Thoracic | 0.039 | 0.003-0.487 | |
| Lumbar | 0.158 | 0.014-1.852 | |
| Sacral | Reference group | - |
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