Testing and validation of the CIC‐cgQ and CIC‐childQ in paediatric patients and their caregivers

Abstract

AbstractAre the clean intermittent catheterization (CIC)‐cgQ and the CIC‐childQ feasible and generate valid measures of success performing CIC? CIC is the primary treatment for neurogenic bladder. However, instituting CIC with children can be challenging. Currently there are no validated instruments to measure the abilities of paediatric patients and their caregivers to perform CIC. The purpose of this study was to evaluate the validity and reliability of a modified version of the Intermittent Self Catheterization Questionnaire (ISC‐Q) in children with neurogenic bladder and their caregivers performing CIC. Children with spinal dysraphism, such as myelomeningocele (MMC) may face urologic challenges related to neurogenic bladder including renal compromise, recurrent urinary tract infections, and urinary incontinence due to bladder deterioration. CIC is an important intervention in the management of patients with neurogenic bladder. There are no valid tools currently available to measure the success of CIC in paediatric patients or their caregivers. A non‐experimental, psychometric research design was employed for this pilot study. Data collection was performed using online and paper surveys. The ISC‐Q was modified into two versions for use in the United States, one for caregivers of children on CIC (CIC‐cgQ) and one for paediatric patients on CIC (CIC‐childQ). A convenience sample of subjects was recruited from Spinal Differences Clinic and the local spina bifida support group. Informed consent was embedded in the invitation letter/email with survey completion indicating consent to participate. Criterion related validity was described using known group sum scores along with Cronbach's α for internal reliability. The tools were pilot tested on 15 caregivers and four children. Cronbach's alphas were .84 and .83 for the caregivers and children, respectively. Subjects identified a priori as successful with CIC scored higher than those identified as unsuccessful. The CIC‐cgQ and the CIC‐childQ are valid and reliable measures of the impact of CIC on the lives of caregivers and children. Future studies with larger sample sizes will allow further psychometric testing. This instrument gives researchers the ability to measure the impact of CIC on the lives of children and caregivers.