PINPOINT: Gaming Technology for SCD Pain
Condition: Sickle Cell Disease; Sickle Cell Anemia in Children; Sickle Cell Thalassemia; Sickle Cell SC Disease
MeSH terms: Anemia, Sickle Cell; Thalassemia; Hemoglobin SC Disease
Study type: Interventional

Summary: 
      Sickle cell disease (SCD) is a common genetic disorder characterized by episodes of pain, yet
      programs to assist SCD adolescents with better identification and communication about pain
      are lacking. Research shows that interactive gaming technology can enhance adolescents'
      learning, and can be especially effective in delivering health-related messages and tools to
      improve self-care. Pinpoint is an interactive gaming app that will be tested in a Phase II
      project to determine whether the app assists SCD teens with improving their communication and
      identification skills for pain self-report.
    

Detailed description: 
      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, the investigator's 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 modules to address 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 randomized step wedge 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 app to identify and translate specific pain
      types for SCD into a gamified app using applied gamification principles.
    

Intervention name(s): Pinpoint app
Intervention type(s): Other
Intervention description(s): Tablet and smartphone app with pain assessment and communication education, and pain assessment tool.
Intervention model: Single Group Assignment
Intervention model description: Randomized step wedge design with multiple baselines
Masking: None (Open Label)
Primary purpose: Supportive Care