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A New Mobile Health System Can Help People with Spina Bifida Take Charge of Their Health

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Spina bifida (SB) is the most common congenital condition leading to disability in the United States. People born with spina bifida have damage to their spinal nerves because their spine didn’t develop or close properly in the womb. They may have reduced bladder and bowel control and loss of feeling in their legs. As a result, they may be more likely to develop health problems like urinary tract infections or skin ulcers than people without SB. People with SB can prevent these health problems by practicing good self-care and keeping in regular contact with their doctors, therapists and other members of their healthcare team. In a recent NIDILRR-funded study, researchers looked at a new mobile health system designed to help adults with SB manage their everyday medical needs and keep in touch with their healthcare team. The researchers wanted to see whether adults with SB would make use of the system’s features, and whether people who used the system would show improved self-management skills or better health.

The study was conducted by the project on Promoting Independence and Self-Management Using mHealth, the Rehabilitation Engineering Research Centers (RERC) on Telerehabilitation, and the RERC from Cloud to Smartphone: Empowering and Accessible Information and Communication Technology. Researchers enrolled 23 adults with SB in a clinical trial to test Interactive Mobile Health and Rehabilitation (iMHere), a mobile health system for Android smartphones that includes several self-management modules within one application (app). The participants were 18-40 years old and all received care from a local SB clinic. Thirteen participants were randomly assigned to receive the mobile health system along with their usual care, while the other ten participants received usual care only.

The iMHere system consists of an Android smartphone app with six modules that provide self-care reminders and tools for patients to communicate with their healthcare team. The app package contains:

  • MyMeds: stores a list of the patient’s medications and reminds the patient when to take them.
  • Telecath: reminds patients about their catheterization program.
  • BMQs: reminds patients about their bowel management program.
  • Skincare: reminds patients to check their skin for wounds. Patients can upload photos of new wounds for their healthcare team members to examine.
  • Mood: allows patients to report their current mood, providing a possible screening for depression.
  • Messages: allows patients to contact members of their healthcare team securely with any questions or concerns.

When a patient reports a problem or concern using any of the modules, it is recorded on a secure electronic portal. The patient’s healthcare team, including nurses, doctors and therapists can quickly access the information and respond through this secure portal.

The 13 participants in the experimental group received the iMHere system along with an unlimited data plan. The participants were instructed to set up reminders and to use the skincare and secure messaging apps as needed for 12 months. For the purpose of this study, an occupational therapist (OT) who functioned as a wellness coordinator interacted with the participants remotely, helping them to develop self-management goals and responding to their health concerns through secure messaging. The wellness coordinator also ensured that the participants received in-person medical care when needed.

The researchers looked at how frequently the experimental participants used iMHere by tracking how often they responded to a reminder or sent a message to the wellness coordinator. To look at the possible benefits of iMHere, the researchers also interviewed participants in both the experimental and control groups every 4 months during the 12-month study. The participants answered questions about their self-management skills, such as how well they could manage their medications or order health-related supplies; their independence, such as how much caregiver support they needed each day; and their mood. In addition, the researchers looked at the number of times the participants had a serious medical issue, such as urinary tract infections or pressure sores, or had planned or unplanned hospital visits during the study period.

The researchers found that, overall, the system was user-friendly and the participants used it frequently as part of their self-management. For example, the participants sent an average of 1.3 secure messages through the portal each week and responded to medication reminders 12 times per week, on average. The skin photo upload feature was used more often than the researchers anticipated. In addition, four of the participants bought new smartphones after the study ended because they thought that using a modern smartphone and health-related apps would benefit their health.

Those participants who were high users of the system reported some improvements in their self-management skills over the study period while those in the control group did not. For example, high users of the MyMeds module said they felt more confident about their ability to manage their medications at the end of the study than they did at the beginning. The participants who received iMHere system also reported slight improvements in their mood and slightly less reliance on caregiver support during the study period than those in the control group, and were slightly less likely to be hospitalized during the year they spent with iMHere than during the year before. These differences were small, but they might be more obvious with a larger sample.

The authors noted that mobile health systems may offer valuable support for people with chronic conditions such as SB. Mobile health systems can provide reminders and instructions about self-management tasks, and they also offer opportunities for patients to receive advice on medical concerns before they require more serious attention. Software refinements, such as adding game-like features or achievement badges for motivation, could make mobile health systems even more beneficial for users. Researchers and developers may want to explore mobile health technology as a self-management aid for people with a variety of chronic conditions.

To Learn More

Development of iMHere continues at the University of Pittsburgh and UbiCue software. To see iMHere in action, check out these YouTube videos from the project:

The RERC on Technology Increasing Knowledge: Technology Optimizing Choice is currently beta testing a mobile game designed to teach young people with spinal injuries and dysfunction about self-management. Preview the game and learn how you can help with testing at

The Spinal Bifida Association offers information, support, and advocacy resources for people with SB and their families:

To Learn More About this Study

Dicianno BE, Fairman AD, McCue M, Parmanto B, Yih E, McCoy A, Pramana G, Yu DX, McClelland J, Collins DM, Brienza DM: Feasibility of using mobile health to promote self-management in spina bifida. American Journal of Physical Medicine and Rehabilitation 2016 95, 425-437. This article is available from NARIC under Accession Number J74110.

Date published: