Introduction: Patients with Spina Bifida (SB) experience Neurogenic Bowel Dysfunction (NBD) and require a daily enema program to become socially continent of feces. The cone ostomy irrigator is typically the first enema device introduced at typical time of potty training, administered by the caregiver daily. The transition to independence with bowel management using this device is difficult for SB patients who may have problems with manual dexterity and balance while sitting on the toilet. Our goal was to develop an assistive device that could allow patients with SB to become independent in administering the cone enema, which allows patients to become autonomous, therefore improving quality of life.
Material and Methods: Our team consists of an Occupational Therapist, Nurse Practitioner and a Urologist. We submitted our idea for an assistive device to the Sprint program through an internal funding mechanism for medical device innovation and were awarded a grant to bring our device to fruition. We partnered with an outside engineering firm to bring the concept to prototype. With the first prototype, we performed am IRB approved pilot study including 10 patients with NBD who came to our office for an evaluation of manual dexterity, upper body range of motion, core strength and executive function. We taught patients and their families how to use the assistive device with their existing cone enema system and sent them home for a one-week trial of the device with planned video visit for feedback.
Results: While use of the device was feasible, patient and family feedback highlighted areas of improvement which we are incorporating into the next iteration of the device.
Conclusion: Patients and families reported that use of the assist device increased independence in bowel management was life changing.
