SCD-PROMIS: A software platform to enhance self-efficacy and patient-provider engagement for children with sickle cell pain

The goal of this project is to reduce pain-related, 30-day readmission rates for sickle cell disease (SCD) patients. Pain is the main reason why SCD patients are admitted and readmitted to hospitals. Often, even after several days of hospitalization, patients continue to have high levels of pain, and a large percentage of patients are readmitted within 30-days of discharge. In fact, readmission rates of SCD patients are higher than those of asthmatics and diabetics. In order to reduce 30-day hospital readmission rates and improve patient care quality, the Affordable Care Act and Centers for Medicare and Medicaid Services have established the Readmissions Reduction Program. In keeping with this effort, we propose a methodology and supporting technology that will fundamentally change the way we monitor SCD patients. This methodology has the potential to decrease SCD patients’admission/readmission rates and to enhance their quality of life, by improving patient reporting, self-efficacy, and patient/provider engagement when there is worsening pain and increased admission/readmission risk. The software platform will use validated Patient Reported Outcome Measurement Information System (PROMIS) measures to remotely monitor patients’ pain and related outcomes after hospital discharge and to increase healthcare provider engagement when there is a worsening of patients’ pain or an increased risk of readmission. This proposal brings together a team of engineers, hematologists, and pain researchers that have worked together before, and who collectively have the expertise to develop and test the feasibility and predictive value of the application in a large population of SCD patients.