The medical complexity of spina bifida results in equally complex self-care regimes that many persons with spina bifida (SB) struggle to effectively manage and maintain. Lack of consistent follow-through of self-care routines and health care recommendations, often results in the development of secondary conditions, impacting morbidity and mortality in this population. This dissertation provides a description of the development and initial clinical testing of an innovative mHealth system to help support adults with SB and improve self-management skills. The clinical needs and functional abilities of the SB population were integrated into a mHealh system called iMHere (Interactive Mobile Health and rehabilitation). The iMHere system consists of software including a suite of smartphone apps specifically designed for persons with SB, a clinician portal, and a communication system connecting the two.
The three primary phases of this study are 1) development, 2) usability testing and 3) clinical application. Due to the nature of development, feedback and improvements to the system continued throughout a year-long randomized control trial (N=26), conducted to determine the clinical efficacy of the system. Usability testing for this project was intensive and occurred in a step-wise manner. Detailed data was collected to revise and improve upon the design and functionality of the smartphone apps.
Results for the first six months of the clinical study are also shared comparing self-management outcomes for the intervention group using the iMHere system versus the control group receiving traditional care through the UPMC Adult SB clinic. Significance was found in looking at time x group (p = .006). In particular, improvement in self-management skills as assessed by the AMIS-II are noted in the intervention group participants from three months to six months. A moderate effect size of 0.46 was found in the association of group and time as calculated with change scores.
Limitations of the clinical study are discussed at length as well as potential future research opportunities including expanding usage of the iMHere system to other populations with chronic conditions and application of the intervention during the transition years (14-21 years)
