SCD-PROMIS: A Software Platform to Enhance Self-efficacy and Patient-provider Engagement for Patients With Sickle Cell Pain

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.

Inclusion Criteria:

1. Participants with Sickle Cell Disease (SCD) (HbSS, HbSC, HbSβ0 thalassemia, HbSβ+
thalassemia, HbSOArab) admitted to the hospital for vaso-occlusive crisis
(VOE)-related pain within the age range of 8 - 21 years.

2. Ability to provide informed consent/assent, comply with study related procedures,
evaluations, and follow-up. In the event that a patient does not have a smart mobile
device (i.e., one that can support the study application), one will be provided for
the patient. Patients younger than the age of 11 years may use their parents phone if
they do not have one. If a patient has a smart mobile device but their parent does not
want them to use the device for the study, the patient may use their parent's phone
instead.

3. Parent of participants with SCD (HbSS, HbSC, HbSβ0 thalassemia, HbSβ+ thalassemia
HbSOArab) admitted to the hospital for vaso-occlusive crisis (VOE)-related pain within
the age range of 8 - 17 years who has assented to participate in the study.

4. Ability to provide informed consent, comply with study related procedures,
evaluations, and follow-up. In the event that a parent does not have a mobile device,
one will be provided for the duration of the study.

Exclusion Criteria:

1. Inability to give informed consent/assent as determined by the investigators

2. Patients with SCD who were admitted for reasons other than VOE-related pain

3. Parents of patients with SCD who were admitted for reasons other than VOE-related pain
or do not assent to participate