Longitudinal Trajectories of Clean Intermittent Catheterization Responsibility in Youths with Spina Bifida

Abstract

Purpose: Clean intermittent catheterization (CIC) responsibility among youths with spina bifida is not well studied. We sought to determine longitudinal trajectories of CIC responsibility to examine the transition of CIC responsibility from caregiver-CIC to self-CIC.

Materials and methods: We performed a secondary analysis of a prospective cohort study of youths with spina bifida. Participants aged 8-15 years originally recruited from 4 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 such as CIC adherence and CIC mastery.

Results: Of 140 youths in the original cohort study, 89 met eligibility criteria for this study. Mean age was 11 years at enrollment and 93% of patients had myelomeningocele. Two distinct trajectory groups emerged: 17% of patients had a low-flat trajectory and 83% had a high-increasing trajectory of CIC responsibility, with shared-CIC by age 8-9 years 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.

Conclusions: Nearly 1 in 5 youths with spina bifida in our cohort persistently required caregiver-CIC over time, while the remainder achieved shared-CIC responsibility by age 8-9 years, with increasing self-CIC responsibility thereafter.

Keywords: intermittent urethral catheterization; neurogenic; self care; self-management; spinal dysraphism; urinary bladder.

Figure 1.. Mean CIC Self-Responsibility by Age Group.

The cohort overall displayed equally shared CIC responsibility score (i.e., score of 2) by age 8-9 years old that increased towards child-only CIC responsibility (i.e., score of 3) over time.

Figure 2.. Two distinct trajectories of CIC self-responsibility found by group-based trajectory modeling.

Trajectory Group 1 (low CIC self-responsibility) constituted 17% (n=15) of the cohort and remained flat and constant over time. Trajectory Group 2 (high-increasing CIC self-responsibility) constituted 83% (n=74) of the cohort and displayed a rapid rise over time.