Pediatric Patient and Caregiver Preferences in the Development of a Mobile Health Application for Management of Surgical Colorectal Conditions.

Patient-centered frameworks are an effective way to engage patients in treatment plans, strengthen adherence behaviors, and improve disease outcomes. These frameworks can also be applied in the design of mobile technology disease management applications. However, the utilization of these frameworks is rare and frequently overlooked in existing colorectal mobile health (mHealth) applications. The purpose of this study was to utilize a patient-centered framework to facilitate the development of a valid, appropriate, and feasible mHealth tool for pediatric patients and their caregivers. To inform application design and production, in-depth interviews were conducted with pediatric patients and their caregivers to capture management experiences, application preferences, and barriers and facilitators to application use. Patient ages ranged from 3 to 16. Six caregivers and 2 adolescent patients participated in the interviews. Patients and caregivers reported various management styles and desired an application that is not only user-friendly and customizable, but also able to facilitate communication and information sharing with other patients, caregivers, and providers. Older patients also wanted the application to give them more independence in managing their disease. Employing patient-centered frameworks is context-specific, but holds much promise at the intersection of mobile technology and healthcare. By incorporating pediatric patient experiences and viewpoints, we identified important components for inclusion in a mHealth surgical colorectal disease management application. Patients and caregivers wanted a mHealth application that was unique to their needs and easy to use. They suggested that the application include treatment tracking, note taking, and provider communication features.

Antegrade Continence Enema Alone for the Management of Functional Constipation and Segmental Colonic Dysmotility (ACE-FC): A Pediatric Colorectal and Pelvic Learning Consortium Study.

PURPOSE: The purpose of the study was to determine if antegrade continence enema (ACE) alone is an effective treatment for patients with severe functional constipation and segmental colonic dysmotility. METHODS: A retrospective study of patients with functional constipation and segmental colonic dysmotility who underwent ACE as their initial means of management. Data was collected from six participating sites in the Pediatric Colorectal and Pelvic Learning Consortium. Patients who had a colonic resection at the same time as an ACE or previously were excluded from analysis. Only patients who were 21 years old or younger and had at least 1-year follow-up after ACE were included. All patients had segmental colonic dysmotility documented by colonic manometry. Patient characteristics including preoperative colonic and anorectal manometry were summarized, and associations with colonic resection following ACE were evaluated using Fisher's exact test and Wilcoxon rank-sum test. p-Values of less than 0.05 were considered significant. Statistical analyses and summaries were performed using SAS version 9.4 (SAS Institute Inc., Cary, North Carolina, United States). RESULTS: A total of 104 patients from 6 institutions were included in the study with an even gender distribution (males n = 50, 48.1%) and a median age of 9.6 years (interquartile range 7.4, 12.8). At 1-year follow-up, 96 patients (92%) were successfully managed with ACE alone and 8 patients (7%) underwent subsequent colonic resection for persistent symptoms. Behavioral disorder, type of bowel management, and the need for botulinum toxin administered to the anal sphincters was not associated with the need for subsequent colonic resection. On anorectal manometry, lack of pelvic floor dyssynergia was significantly associated with the need for subsequent colonic resection; 3/8, 37.5% without pelvic dyssynergia versus 1/8, 12.5% (p = 0.023) with pelvic dyssynergia underwent subsequent colonic resection. CONCLUSION: In patients with severe functional constipation and documented segmental colonic dysmotility, ACE alone is an effective treatment modality at 1-year follow-up. Patients without pelvic floor dyssynergia on anorectal manometry are more likely to receive colonic resection after ACE. The vast majority of such patients can avoid a colonic resection.