SCD-PROMIS: A Software Platform to Enhance Self-efficacy and Patient-provider Engagement for Patients With Sickle Cell Pain
Condition: Sickle Cell Disease; Anemia; Anemia, Hemolytic; Anemia, Sickle Cell; Hematologic Diseases
MeSH terms: Anemia; Anemia, Sickle Cell; Hematologic Diseases; Anemia, Hemolytic
Study type: Interventional

Summary: 
      The overall goal of the project is to reduce pain-related, 30-day readmission rates for
      sickle cell disease (SCD) patients. The investigators want to see if a mobile phone
      application (app) can help decrease the need for repeat admission to the hospital because of
      sickle cell pain.
    

Detailed description: 
      Pain is the main reason why SCD patients are admitted and readmitted to the hospital. 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, the investigators propose a
      methodology and supporting technology that has the potential to change the way SCD patients
      are monitored after hospital discharge and in turn, decrease readmission rates. This
      methodology also has the potential to enhance the quality of life of SCD patients by
      improving patient reporting, self-efficacy, and increasing patient/provider engagement when
      there is worsening pain and increased admission/readmission risk. This software platform uses
      validated Patient Reported Outcome Measurement Information System (PROMIS) measures to
      remotely monitor SCD patients' pain and related outcomes after hospital discharge. With this
      initial study, the investigators propose to use this monitoring platform to identify the
      predictors of readmission, to develop a readmission prediction engine, and to design the next
      version of the app with built in interventions to address those readmission risks. This
      monitoring platform could also increase healthcare provider engagement when there is a
      worsening of patients' pain and/or an increased risk of readmission. In order to build and
      optimize this monitoring platform, the investigators have assembled a team of engineers,
      hematologists, pain researchers, and statisticians that have worked together, 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.
    

Intervention name(s): PROMIS for Pain Management App
Intervention type(s): Other
Intervention description(s): At hospital discharge, the investigators will collect baseline surveys, a blood sample, and download the PROMIS for Pain Management App onto the subject's mobile device. For five consecutive weeks, PROMIS measures will be collected through weekly surveys. The investigators plan to compensate patients for their time. Patients will come back to the hospital after 35 days for a final blood draw and set of surveys. In the event a patient gets readmitted, the investigators will record that admission. The investigators will also collect Proxy PROMIS measures from parents of participants between the ages of 8 and 17-years who have agreed to participate in the study. It is the goal of the investigators to engage one of the parents in the reporting of weekly validated Proxy PROMIS measures.
Other intervention name(s): SCD-PROMIS
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Other