PINPOINT: Gaming technology to engage adolescent sickle cell patients in precision pain management

DESCRIPTION provided by applicant Sickle cell disease SCD is the most common inherited blood disorder in the U S and disproportionately affects African Americans and Hispanics Approximately U S children are born with SCD annually SCD results from abnormal hemoglobin and causes red blood cells RBCs to become misshaped andquot sickle shapedandquot 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 table application andquot appandquot for year olds with SCD Specifically this Phase I SBIR project will develop a Pain Assessment Tool PAT to describe and categorize specific types of pain experienced by adolescents with SCD and create an app andquot Pinpointandquot 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 develop the PAT using guidance from an Expert Advisory Board EAB of SCD clinicians conduct a series of cognitive interviews with adolescent SCD patients to guide and refine PAT development conduct iterative focus groups with adolescent SCD patients to guide and refine user interface design of the Pinpoint app program a functional Pinpoint prototype and conduct usability testing of the prototype with year old SCD patients to assess functionality navigation and satisfaction This project is innovative and timely Pinpoint will be the first tablet app to identfy and translate specific pain types for SCD into a gamified app using applied gamification principles PUBLIC HEALTH RELEVANCE Sickle cell disease SCD is a common genetic disorder characterized by episodes of pain yet assessments to identify type intensity frequency and phase of pain among SCD adolescents is lacking Research shows that interactive gaming technology can enhance adolescentsandapos learning and can be especially effective in delivering health related messages and tools to improve their self care Pinpoint is an interactive gaming tablet app that will be developed with the significant input of clinical experts to assist SCD teen with better identification and self report of their pain