User-centered Design Approach to the Development and Pilot Testing of a Smartphone App To Support Real-time Pain Management for Adolescents with Cancer
It is estimated that 49-96% of adolescents with cancer will experience pain related to the disease and/or associated invasive procedures and treatments. Pain negatively impacts adolescent health-related quality of life (HRQL) and is associated with long-term morbidity. In response, a smartphone-based pain app, called Pain Squad+, capable of providing adolescents with real-time pain management support was developed and evaluated. Using user-centered methods, research aims were to utilize iterative cycles of usability testing with adolescents with cancer to refine the app (Study 1), to evaluate the ability to implement the Pain Squad+ app in a hypothesis-testing trial (Study 2), and to obtain estimates of treatment effects on adolescent health outcomes (Study 2).
In Study 1, iterative cycles of usability testing with 16 adolescents were used to refine the Pain Squad+ app to ensure it was easy to use, easy to understand, efficient, and acceptable to adolescents. In Study 2, 33 adolescents used the app for 28-days, receiving real-time self-management advice and clinical support from a nurse dependent on self-reported pain. Acceptability of the intervention assessed quantitatively and qualitatively was high. The study accrual percent was 75% and the withdrawal percentwas 3%. Technical malfunctioning of the app was rare. The nurse received pain-related emails from 39% adolescents with a mean time to follow-up of 62.5 hours (SD=55.5). Outcome assessment piloting was successful with a mean of 94.9% (SD=4.3) of baseline and 84.3% (SD=31.0) of post-study questions completed. Adherence to pain reporting was 69.0Âą40.8%. Significant trends in improvement in pain intensity and HRQL were observed (pPh.D