Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial

• DOI: 10.2196/40096
• Publication Date: 2022-07-31T18:44:35Z
• Authors: Chitra Lalloo; Fareha Nishat; William Zempsky; Nitya Bakshi; Sherif Badawy; Yeon Joo Ko; Carlton Dampier; Jennifer Stinson; Tonya M Palermo
• Keywords: Self-Management; eHealth

Background Sickle cell disease (SCD) is characterized by severe acute pain episodes as well risk for chronic pain. Digital delivery of SCD self-management support may enhance skills and accessibility youth. However, little known about how youth with their caregivers engage digital health programs. iCanCope a platform adapted through user-centered design approach. The program was delivered via website (separate versions caregiver) mobile app (youth only). Objective We aimed to characterize patterns user engagement the among caregivers. Methods A randomized controlled trial completed across multiple North American clinics. Eligible were aged 12-18 years, diagnosed SCD, English-speaking, experiencing moderate-to-severe interference. English-speaking child enrolled in study. Dyads receive intervention or attention-control education 8-12 weeks. This report focused on dyads who received intervention. User-level analytics captured. Individual interviews conducted 20% dyads. Descriptive statistics quantitative engagement. Content analysis summarized qualitative interview data. Exploratory tested hypothesis that caregiver would be positively associated Results cohort included primarily female (60% [34/57] youth; 91% [49/56] caregivers) Black (>90% [53/57] [50/56]) participants. Among 56 given access, differential usage observed: both engaged (16/56, 29%), only (24/56, 43%), (1/56, 2%), neither individual 29%). While most (40/57, 70%), did not (39/56, 70%). Youth more likely than (85% versus 68% [23/57]), popular content categories goal setting, introduction, symptom history. caregivers, behavioral plans, setting areas. As hypothesized, there moderate positive association between (χ21=6.6; P=.01; ϕ=0.34). Interviews revealed continue use (11/12, 92%) recommend it others (10/12, 83%). reasons preference ease use, acceptable time commitment, interactivity. Barriers high burden limited perceived relevance content. Conclusions one first studies apply findings will used optimize prior release. Trial Registration ClinicalTrials.gov NCT03201874; https://clinicaltrials.gov/ct2/show/NCT03201874