What patients and families need to know
SCD-PROMIS- An App for Outpatient Monitoring and Treatment of Sickle Cell Pain
- Kevin Cleary, PhD
- Kevin Gary, PhD
- Zenaide Quezado, MD
In the U.S., sickle cell disease (SCD) affects approximately 100,000, predominantly African-American individuals, who face a life-long challenge of living with pain that can be acute and chronic and is associated with decreases in quality of life and healthcare disparities. SCD-pain prompts approximately 180,000 emergency visits, 75,000 hospitalizations, and over $475 million in yearly hospital costs. When SCD patients are hospitalized because of intractable pain, often there can be little change in self-reported pain and the 30-day readmission rate is very high (17-50 percent). The most common reason for readmission is recurrent pain, which suggests that SCD pain is undertreated in the outpatient setting which in turn contributes to increased readmission. Other contributing factors for higher readmission rate for pain in SCD patients include the recurrent nature of vaso-occlusive crisis and poor patient compliance with therapeutic interventions and scheduled follow-up appointments. Feasibility studies have shown that web-based technology can help assess adherence to therapeutic interventions in SCD and other pain syndromes, improve self-efficacy, and decrease barriers to continuity of care (limited hospital access, travel difficulties). However, it is unclear whether this technology can improve monitoring of patients’ clinical outcomes (pain, anxiety, fatigue, mobility), increase provider engagement, or lower readmission rates. We are developing a mobile phone-based application that uses rewards systems (badges, gift cards) to increase patient pain and therapy compliance reporting, identify worsening pain, and predict readmission. In this app, we are using validated NIH Patient Reported Outcomes Measurement Information System (PROMIS) measures to weekly monitor pain and associated outcomes (anxiety, fatigue, mobility) in SCD patients after hospital discharge. The next step is to develop an alert system (alerts, e-mails, text messages) and interventions to increase patient/provider engagement, to improve outpatient pain management, and to decrease hospital readmission. The long-term goal of this proposal is to improve outpatient monitoring and pain management and decrease readmission rates in SCD patients.
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