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.

Selecting an Ecological Momentary Assessment Platform: Tutorial for Researchers.

BACKGROUND: Although ecological momentary assessment (EMA) has been applied in psychological research for decades, delivery methods have evolved with the proliferation of digital technology. Technological advances have engendered opportunities for enhanced accessibility, convenience, measurement precision, and integration with wearable sensors. Notwithstanding, researchers must navigate novel complexities in EMA research design and implementation. OBJECTIVE: In this paper, we aimed to provide guidance on platform selection for clinical scientists launching EMA studies. METHODS: Our team includes diverse specialties in child and adolescent behavioral and mental health with varying expertise on EMA platforms (eg, users and developers). We (2 research sites) evaluated EMA platforms with the goal of identifying the platform or platforms with the best fit for our research. We created a list of extant EMA platforms; conducted a web-based review; considered institutional security, privacy, and data management requirements; met with developers; and evaluated each of the candidate EMA platforms for 1 week. RESULTS: We selected 2 different EMA platforms, rather than a single platform, for use at our 2 research sites. Our results underscore the importance of platform selection driven by individualized and prioritized laboratory needs; there is no single, ideal platform for EMA researchers. In addition, our project generated 11 considerations for researchers in selecting an EMA platform: (1) location; (2) developer involvement; (3) sample characteristics; (4) onboarding; (5) survey design features; (6) sampling scheme and scheduling; (7) viewing results; (8) dashboards; (9) security, privacy, and data management; (10) pricing and cost structure; and (11) future directions. Furthermore, our project yielded a suggested timeline for the EMA platform selection process. CONCLUSIONS: This study will guide scientists initiating studies using EMA, an in vivo, real-time research tool with tremendous promise for facilitating advances in psychological assessment and intervention.

Initial Adjustment to the COVID-19 Pandemic and the Associated Shutdown in Children and Adolescents With Chronic Pain and Their Families.

Objectives: Youth with chronic pain often struggle to function in multiple domains due to pain and associated psychosocial distress. In 2020, schools and businesses shut down and people were encouraged to remain at home due to the COVID-19 pandemic, eliminating or reducing stress due to functional difficulties. This study assessed whether pain and associated psychosocial outcomes improved in youth with chronic pain during the shutdown, compared with before the pandemic. Methods: Patients who completed clinical outcome measures during a multidisciplinary evaluation before the pandemic were readministered the same measures (PROMIS Anxiety, Depression, Sleep Disturbance, PCS, PedsQL) during the shutdown. At follow-up, patients also completed measures of adjustment to COVID-19 and their parents completed a measure of pandemic effects. Results: Participants included 47 patients ages 8-18 and a parent/guardian. The pandemic impacted families in both positive (e.g., more quality time with family) and negative ways (e.g., social isolation, disruption in care). Pain intensity and pain catastrophizing significantly decreased during the shutdown (ps <0.01). Change in pain catastrophizing was correlated positively with change in psychological stress (p = 0.004) and anxiety (p = 0.005) and negatively with change in quality of life (p = 0.024). Discussion: Pain and pain catastrophizing decreased initially during the shutdown related to the COVID-19 pandemic. Change in catastrophizing was associated with change in stress and anxiety. It may be that the reduction in functional demands contributed to this change. Functional difficulties should be addressed in treatment, including pain coping and also environmental modification to support optimal functioning in youth with chronic pain.