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

 Sickle cell disease (SCD) is the most common inherited blood disorder in the U.S., and affects primarily African Americans and Hispanics. Approximately, 1,000 U.S. children are born with SCD annually. 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 primary cause of SCD-related hospital admissions. Accurate assessment of pain specifiers (type, frequency, and intensity of pain) can help with ameliorating pain quickly and effectively. Reducing barriers to collection and promoting the value of accurate SCD pain assessment is a need in pediatric medicine. The interactive games for health literature among youths has shown video games can improve self-efficacy; stimulate health discussions with friends, family and clinical team; encourage seeking support and advice; and can emphasize behavior acquisition via experiential learning. Interactive games can provide information about causes, treatments, and self-care options, and can improve self-care and reduced emergency clinical utilization. Pinpoint: Gaming technology to engage adolescent sickle cell patients in precision pain management was a Small Business Innovation Research (SBIR) Phase I project that examined the feasibility and acceptability of a gamified tablet application intended to encourage teens (aged 13-17) to talk about and assess their SCD pain. The prototype consisted of a Pain Assessment Tool, vocabulary game, body scanner reflection, educational self-disclosure activity, and excerpts from the Hope and Destiny Jr. book. Healthcare providers were interviewed on the app’s acceptability and potential function within the clinical practice (n=4). Teens participated in cognitive interviews, focus groups, and usability testing 

(n=16). Of these participants, the average age was 14.5 + 1.3 years, 33.75% were female, and 50% were diagnosed with Hb SS (n=13). The System Usability Scale (SUS), a validated tool for assessing the usability and acceptability of technological products, served as the primary outcome. The preliminary SUS score (n=5) was 82.5 (68% is “above average”), suggesting a high level of acceptability and usability among users; usability testing is on-going. Final project outcomes and the development of the Pinpoint app will be discussed.