Adolescent and Parent Perspectives on Digital Phenotyping in Youths With Chronic Pain: Cross-Sectional Mixed Methods Survey Study

Background: Digital phenotyping is a promising methodology for capturing moment-to-moment data that can inform individually adapted and timely interventions for youths with chronic pain. Objective: This study aimed to investigate adolescent and parent endorsement, perceived utility, and concerns related to passive data stream collection through smartphones for digital phenotyping for clinical and research purposes in youths with chronic pain. Methods: Through multiple-choice and open-response survey questions, we assessed the perspectives of patient-parent dyads (103 adolescents receiving treatment for chronic pain at a pediatric hospital with an average age of 15.6, SD 1.6 years, and 99 parents with an average age of 47.8, SD 6.3 years) on passive data collection from the following 9 smartphone-embedded passive data streams: accelerometer, apps, Bluetooth, SMS text message and call logs, keyboard, microphone, light, screen, and GPS. Results: Quantitative and qualitative analyses indicated that adolescents and parent endorsement and perceived utility of digital phenotyping varied by stream, though participants generally endorsed the use of data collected by passive stream (35%-75.7% adolescent endorsement for clinical use and 37.9%-74.8% for research purposes; 53.5%-81.8% parent endorsement for clinical and 52.5%-82.8% for research purposes) if a certain level of utility could be provided. For adolescents and parents, adjusted logistic regression results indicated that the perceived utility of each stream significantly predicted the likelihood of endorsement of its use in both clinical practice and research (Ps<.05). Adolescents and parents alike identified accelerometer, light, screen, and GPS as the passive data streams with the highest utility (36.9%-47.5% identifying streams as useful). Similarly, adolescents and parents alike identified apps, Bluetooth, SMS text message and call logs, keyboard, and microphone as the passive data streams with the least utility (18.5%-34.3% identifying streams as useful). All participants reported primary concerns related to privacy, accuracy, and validity of the collected data. Passive data streams with the greatest number of total concerns were apps, Bluetooth, call and SMS text message logs, keyboard, and microphone. Conclusions: Findings support the tailored use of digital phenotyping for this population and can help refine this methodology toward an acceptable, feasible, and ethical implementation of real-time symptom monitoring for assessment and intervention in youths with chronic pain.