The PARC Program at Children’s Healthcare of Atlanta provides medical care for children born with Anorectal Malformations, Hirschsprung’s Disease, Spina Bifida, Neurogenic Bladder/Bowel, spinal anomalies and children with refractory constipation. Though some of these children’s anomalies can be “fixed” anatomically with surgery, they face a lifelong problem of incontinence. The PARC Program provides ongoing care to provide these children with daily therapies which keep them clean and continent for both urine and stool on a daily basis. Dealing with incontinence can be emotionally and logistically challenging and as a result families find it difficult to adhere to daily treatment regimens and data collection requirements that are critical to allowing clinicians to adjust treatment regimens appropriately.
Together, with Georgia Tech designers and developers, PARC is developing a mobile app to assist parents of this patient population by providing various emotional and logistical supports. Visualizations of progress towards a managed state, quicker feedback to data collection and messages of encouragement through the app provide emotional support.
Meanwhile, the app provides treatment reminders and data collection reminders as well as resources to support buying the correct over the counter medications to prepare for treatment and detailed instructions for how to perform the treatment. In addition, this APP will help the “savvy” user understand the connection of their therapy with their continence. All of these features are ultimately designed to engage the families and help the them feel more empowered as they perform the necessary treatment.
The CRC app will be delivered on both iOS and Android devices and will provide the following functionality:
- Notifications for families/children to remember their daily treatment, toilet times, medication time, etc.
- Ability to enter stool/urine information as appropriate in the form of a diary
- Ability to create visual chart on the app for patient to track his/her own progress as it relates to fecal continence over time.
- Ability to schedule reminders such as CRC visits and medication reminders (which are then used for the notification system)
- A database of over the counter medications relevant to their condition
- A database aimed tracking both patient and family quality of life assessment which can both assist with patient/family expectations for the future as well as provide means by which we medical providers can learn how to better address the needs of our patients.
- A form of communication to the CRC practitioner