Gaming Technology to Engage Adolescent Sickle Cell Patients in Pain Management

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
are lacking. Reducing barriers to collection and promoting the value of accurate SCD pain
assessment is a need in pediatric medicine. Pinpoint will be an innovative interactive
assessment tool that engages patients while allowing physicians to collect important health
data. This project will test the feasibility of applying gamification principles to develop a
tablet application ("app") for 13-17 year olds with SCD. Specifically, this Phase I SBIR
project will (1) develop a Pain Assessment Tool (PAT) to describe and categorize specific
types of pain experienced by adolescents with SCD; and (2) create an app ("Pinpoint"), that
will translate the PAT into gamified technology. The goal of Pinpoint is to engage adolescent
patients and improve pain specification by developing a game-based pain assessment tool
delivered via a tablet app to engage adolescent SCD patients, improve their pain
specification self-report, and improve pain management by clinicians. The PAT will be
developed using expert guidance from preeminent SCD clinicians. User-centered Design theory
will be applied in the development of the app and will be guided by iterative cognitive
interviews and focus groups with members of the target population, SCD teens. The project
specific aims are to (1) develop the PAT using guidance from an Expert Advisory Board (EAB)
of SCD clinicians; (2) conduct a series of cognitive interviews with adolescent SCD patients
to guide and refine PAT development; (3) conduct iterative focus groups with adolescent SCD
patients to guide and refine user interface design of the Pinpoint app; (4) program a
functional Pinpoint prototype; and (5) conduct usability testing of the prototype with 13-17
year old SCD patients to assess functionality, navigation, and satisfaction. 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.

Phone Interview, Focus Group, and Usability Inclusion Criteria:

- Be 13-17 years of age

- Be diagnosed with Sickle Cell Disease

- Able to read and speak English

- Able to assent to participate

Phone Interview, Focus Group, and Usability Exclusion Criteria:

- Not 13-17 years of age

- Not diagnosed with Sickle Cell Disease

- Unable to read and speak English

- Unable to assent to participate

Healthcare Provider Interview Inclusion Criteria:

- Be a healthcare provider to teens with sickle cell disease

- Be 18 years of age or older

- Able to read and speak English

- Able to consent to participate

Healthcare Provider Interview Exclusion Criteria:

- Not a healthcare provider to teens with sickle cell disease

- Not 18 years of age or older

- Unable to read and speak English

- Unable to consent to participate