Sickle Cell Anemia and Pain Crisis: Empowerment by Self Monitoring

Sickle Cell Anemia is a debilitating genetic condition effecting nearly a million people in the United States. Sickle Cell Disease (SCD) causes dysfunctional, rigid, crescent shaped hemoglobin to aggregate within an individual’s cardiovasculature, causing an exacerbation of acute pain or consistent and intermittent chronic pain. Hydration status of red blood cells can contribute to factors effecting the sickling process and influence long term organ function. The purpose of this study is to describe the signs and symptoms adults with SCD associate with an emerging pain crisis, identify the self-care strategies adults with SCD use to mitigate a crisis; and explore individuals with Sickle Cell Disease interest in using wearable technology to monitor their health status. A cross-section of members from the online support community, OneSCDvoice (https://www.onescdvoice.com/), were recruited to complete an anonymous online questionnaire. The project received human subjects research approval from the University of North Carolina at Chapel Hill Institutional Review Board. Qualitative content analysis was used to code responses and identify themes. Results from this cross-sectional survey of adults with SCD indicated that participants link hydration status to the frequency, severity, and duration of sickle cell pain crisis. Participants identified a number of physiologic parameters a personal device should monitor and indicated a willingness to use a device for self-monitoring. Participants expressed enthusiasm for a devise to help monitor their disease and alert others that they are facing physiological decline and are in pain.Bachelor of Scienc