Spina bifida, which falls under the umbrella of neural tube defects (NTD), is a congenital disorder resulting in incomplete closure of part of the vertebral column. NTD more accurately constitutes a spectrum, with more severe forms involving protrusion of the spinal cord.
The CDC estimates that 1,500 babies are born with spina bifida annually. Too high of a figure when folic acid supplementation during early pregnancy is a simple and effective preventive measure for NTD. Now, a new pilot study has shown that smart phone apps might improve self-care in these patients.
Young adults living with spina bifida face everyday challenges including mental health, personal mobility, bladder and bowel function and skin and eye care. Researchers developed an app -- Mobile Health and Rehabilitation (iMHere) -- that was designed to assist adults with disabilities in self-management routines. Then they conducted a small study to test its efficacy for improving medical and psychosocial outcomes.
The iMHere system features included letting patients access lists of their medications, with photographs and descriptions of the drugs, as well as giving users reminders for when to take these meds. It also provided reminders and instructions on how to inspect for wounds, care for their skin and catheters, and management of their bowels. Patients were also able to report their compliance with these activities. On beneficial feature was the built-in surveillance, which allowed users to report symptoms which could be red flags for urinary tracts infections or constipation. The app was also equipped with surveys to periodically assess for depression. The iMHere software also features an interactive platform for patients to communicate with clinicians via a text messaging service.
Since spina bifida patients can also suffer from motor, sensory and cognitive impairment, the hardware and software were designed to accommodate these issues.
The randomized controlled trial followed 23 participants for one year. A control group received routine spina bifida care, while the treatment group received a smartphone with the iMHere system. At the end of the study researchers found that participants met or exceeded set benchmarks for use of the iMHere app. Participants were more likely to use the app to remind them to do tasks that did not occur on a daily basis, such as bowel management. Researchers noted that because patient's medication were modified often throughout the study, the medication tracker was extremely helpful. They were also more likely to report new symptoms via message, survey or photo.
Despite many expected and observed benefits of the app, high usage of the app did not result in decreased adverse medical events. But researchers did note that participants showed marked improvement in self-management skills, as they appeared to have greater independence in managing their condition by the end of the study.
The use of iMHere app in this study represents a landmark initiative for young persons with chronic conditions and disabilities and not just for spina bifida. Arguably with a larger sample population more benefits will become clear, and creators of the app are still working on improvements to the iMHere system. The future looks bright for the possibility of smart phones improving patient's lives who have chronic conditions.