Sickle cell disease (SCD) is the most common inherited blood disorder in the U.S. and disproportionately
affects African Americans and Hispanics. Approximately, 1,000 U.S. children are born with SCD annually. SCD
results from abnormal hemoglobin and causes red blood cells (RBCs) to become misshaped (“sickle-shaped”).
Sickled cells can block the flow of blood in small arteries causing tissue and organ damage and other life-
threatening comorbidities. SCD complications can be serious and have a significant impact upon well-being
and quality of life. Pain is the hallmark symptom associated with SCD, and is the most common clinical
problem seen in children and the number one cause of SCD-related hospital admissions. If left untreated, these
painful episodes can result in morbidity and mortality. Accurate assessment of pain specifiers (type, frequency,
and intensity of pain) can help with ameliorating pain quickly and effectively. Despite children being accurate
self-reporters of their pain, strategies which are effective and engaging to assist with pain identification and
communication of pain are lacking. In a Phase I SBIR, our team examined the feasibility and acceptability of a
gamified tablet application (Pinpoint) intended to encourage teens to talk about and assess their SCD pain. The
Phase I specific aims were : (1) work with an Expert Advisory Board (EAB) of experts to develop a new pain
assessment tool (PAT) to engage adolescent SCD patients, improve pain specification by patients, and improve
pain management by clinicians; (2) conduct cognitive interviews and focus groups with 13-17 year old SCD
patients to guide and refine development of app content, design, and aesthetics to fully develop a functioning
prototype; (3) conduct usability testing with 13-17 year old SCD patients to assess functionality, navigation, and
satisfaction; (4) conduct cognitive interviews with medical providers to provide input on app content, perceived
barriers to use, and its potential for clinical use and integration to inform future implementation; and (5)
develop a specifications document to outline the Phase II development plan. Deliverables were met and
feasibility was confirmed by the EAB. The proposed Phase II project will (1) develop a fully programmed,
interactive Pinpoint app consisting of 5 modules addressing pain identification and communication; (2)
conduct usability testing of Pinpoint to evaluate the user interface, ease of use, and perceived barriers in order
to optimize the app prior to large scale evaluation (n=14); and (3) test the full app with 13-17 year olds with
SCD (n=100) using a within-subjects design to evaluate changes in (a) knowledge acquisition for
communicating about pain and types of pain; (b) the Pain Assessment; (c) SCD general knowledge and self-
efficacy; (d) family cohesion; and (e) app usage. Overall, the proposed project has the potential to significantly
impact the health of SCD teens by providing important skill acquisition for communicating about and
identifying pain. This project is innovative and timely. Pinpoint will be the first tablet app to identify and
translate specific pain types for SCD into a gamified app using applied gamification principles.
