Presentation Authors: Azadeh Wickham*, Susan McElroy, Kansas City, MO
Introduction: Clean Intermittent Catheterization (CIC) is the leading treatment for neurogenic bladder. However, several gaps in knowledge in relation to CIC therapy in pediatric spina bifida patients have been identified. These include timing of CIC introduction for patient and caregiver, lack of tools to measure quality of life in patients on CIC, and tools that are not specific to caregivers and children on CIC. In 2012, Pinder et al., developed and validated a self-reported outcome measurement tool, intermittent self-catheterization questionnaire (ISC-Q), used to evaluate certain aspects of quality of life and needs of adult patients on a CIC program. The purpose of this study was to evaluate the validity and reliability of ISC-Q in children with neurogenic bladder and their caregivers performing CIC.
Methods: First developed in the United Kingdom, the ISC-Q was modified with permission, for cultural and linguistic clarity for children and caregivers in the United States. Two tools were created, one for a caregiver (CIC-cgQ) and one for use in pediatric patients (CIC-childQ). Feedback on wording and content was solicited from volunteers from a local chapter of Kids Impacting Disease through Science (KIDS) and a hospital family advisory board. Subjects were recruited at the local spina bifida support group and purposefully from the Spinal Differences Clinic based on their success/non-success with CIC. Other subjects were recruited from flyers and emails. The CIC-cgQ is 25 items and scores range from 25-125 and the CIC-childQ is 23 items and scores range from 23-115. Internal reliability analyses were performed, along with criterion-related validity using known group independent t-tests.
Results: The CIC-cgQ was pilot tested with 15 caregivers and the CIC-childQ was tested with 4 pediatric patients. Cronbachâ€™s alphas were .84 and .83 respectively. There was a statistically significant difference on total score between the successful (mean = 115) and unsuccessful (mean = 79) caregivers (t = 17.64, p < .001). The successful child subjects also scored higher, but the difference was not significant (99.0 vs 76.5).
Conclusions: Despite the small sample size, this pilot work suggests that that the CIC-cgQ and the CIC-childQ are valid and reliable measures of success or difficulty for caregivers and children who perform CIC. The evidence is sufficient to utilize the tool in a future studies. Follow up studies with larger sample sizes will allow for additional psychometrics to be conducted. These instrument give researchers the ability to measure the impact of CIC on the lives of children and caregivers.