P-021: THE LIVING WELL WITH SICKLE CELL MOBILE APPLICATION

Abstract

Purpose: Individuals with sickle cell disease have many options for mobile applications. Everything from monitoring pain, nutrition, exercise, and more. This stakeholder-driven mobile application is a self-management tool that was developed to assist young adults with sickle cell disease with access to information. The aim was to develop a stakeholder-driven mobile application to assist persons with sickle cell disease with a tool for self-management, and access to information from trusted resources. The purpose of the LWSC® App is to provide the user with a tool to track sickle cell episodes within the context of daily living with access to quality, trusted information available through the LWSC® App. It is well documented that mobile applications have utility and the concept is widely accepted by persons living with sickle cell disease. Materials and methods: The Living Well with Sickle Cell® App (LWSC®App) is a component of the Living Well with Sickle Cell® Initiative focusing on improving the lives of children and adults with sickle cell disease(SCD). The design is a collaboration with g youth and young adults with sickle cell disease to improve their overall wellness. The LWSC®App design research was conducted over a two-year period, engaging 3 groups of participants in 2 sets of focus groups; youth ages 13-17 and their parents, young adults aged 18-26, and a survey conducted through our social media networks. The design of the LWSC®App is the result of our commitment to remain stakeholder-driven and patient-focused throughout the process. Pain crises may be caused or influenced by a variety of factors including overall wellness, mood, and hydration. With the mobile application (LWSC®App) patients can log pain, mood, and hydration levels. This information can help avoid certain behaviors and adapt to stay healthier, live longer, leading to more time between crises. Many persons with sickle cell disease suffer from memory issues and chronic fatigue. The calendar tool helps manage doctor’s appointments, medication and improve adherence to treatment regimens. Results: LWSC®App analytic dashboard is used to understand what features are used the most and use this information to make quality improvements. Users range from persons living with sickle cell to parents, students, and medical professionals with 95% of users reporting that they are satisfied or very satisfied with the LWSC® App information and ease of use. Currently, the mood, hydration, and pain logs are used the most, respectively. In year one, post-beta testing, there were 37 users from two countries; the United States and Canada. In year two, after developing promotional videos and launching a social media campaign through a private Facebook Group, Sickle Cell Mom’s Rock, the number of users has grown to nearly 100 from four countries. Conclusion: The LWSC®App is a disease self-management tool, available at no cost, yet, has tremendous value to persons living with sickle cell disease and their families, and the network of medical professionals providing quality care across the lifespan. This powerful mobile application can be downloaded for both android and IOS. It was designed with stakeholder input and remains stakeholder-driven.App Short The authors do not declare any conflict of interest