Development of a Smartphone Application for Children and Adolescents with Multiple Sclerosis and Their Parents

Thursday, June 2, 2016
Exhibit Hall
Lisa V Duffy, PhD, RN , Child Neurology, Boston Children's Hospital, Boston, MA
Lisa V Duffy, PhD, RN , Child Neurology, Boston Children's Hospital, Boston, MA

Background: Adolescents with pediatric onset MS (POMS) urgently need specialized care and resources specifically tailored for them as their condition requires complicated, life-long management. Currently there are few published interventions focused on improving the quality of life for adolescents with POMS. This project addressed this gap by developing a smartphone application that can help this vulnerable population manage and prevent disability, ultimately resulting in an improved quality of life. As social media and interactive technology platforms are increasingly part of our healthcare environment and patients are given more responsibility to manage their own conditions, providers, third party payers and high-tech companies are progressively relying on technology as an important additional resource for patient management. Although mobile applications providing education and symptom tacking abound, few are interactive. In addition, almost none are designed specifically for adolescents. 

Objectives: To create an application to improve disease management, improve quality of life by engaging patients in own health management, and facilitate shared decision making with enhanced communication. Methods: Focus groups were initially conducted with both adolescents with MS and their parents being treated at a pediatric MS center of excellence in the Northeast. Results from these focus groups were used to develop a survey, which was distributed to parents of children with MS from across the country. Together, with evidence from the current literature and expert opinion, the results from the focus groups and survey informed the development of a smartphone application. Provider expertise and family experience was crucial in developing a product that would be beneficial to all application users. 

Results: The smartphone application for patients and families with POMS was successfully created and integrated with the electronic medical record system at a large quaternary hospital in the Northeast. The application currently consists of symptom tracking, medication tracking, communication and real-time data collection.

Conclusions: This research has the potential to have a significant impact on the health and well-being of this vulnerable population. Research shows that early and effective management of POMS lessens the burden of the disease into adulthood. We need to aggressively devise new and imaginative approaches to improve the care we provide to these patients as their future depends on it.