JMIR Publications

ABSTRACT

Background:

Sickle cell disease (SCD) is characterized by severe acute pain episodes as well as risk for chronic pain. Developing pain self-management skills early in the disease trajectory can support improved pain coping. Digital delivery of SCD pain self-management support may enhance accessibility for youth. However, little is known about how youth with SCD and their caregivers engage with digital health programs. iCanCope with Pain is a digital pain self-management platform originally developed for youth with chronic pain. The platform was adapted for youth with SCD and caregivers through a user-centred design approach.

Objective:

To characterize patterns of user engagement with the iCanCope with SCD program among youth with SCD and their caregivers.

Methods:

Recruitment took place at multiple North American SCD clinics. Eligible youth were aged 12–18 years, diagnosed with SCD, English-speaking, and experiencing moderate-to-severe pain interference. Eligible caregivers were English-speaking with a child enrolled in the study. Dyads were randomized to receive the iCanCope intervention or attention-control education for 8-12 weeks. This report focuses on engagement among dyads who received the intervention. Self-management content was delivered via website (separate versions for youth and caregiver) and mobile app (youth only). User-level analytics were captured. Individual interviews were conducted with 20% of dyads. Descriptive statistics characterized quantitative engagement. Content analysis summarized qualitative interview data. Exploratory analysis tested the hypothesis that caregiver engagement would be positively associated with child engagement.

Results:

The cohort included primarily female (60% of youth; 91% of caregivers) and Black (>90% of youth and caregivers) participants. Among 56 dyads given program access, differential usage patterns were observed: youth and caregiver both engaged [16 (29%)], only youth engaged [24 (43%)], only caregiver engaged [1 (2%)], and neither individual engaged [16 (29%)]. While most youth engaged with the program (70%), most caregivers did not (70%). Youth were more likely to engage with the app than the website (85% versus 68%) and the most popular content categories were goal setting, program introduction, and symptom history. Among caregivers, program introduction, behavioral plans, and goal setting were the most popular content areas. As hypothesized, there was a moderate positive association between caregiver and child engagement, X2=6.6, p=0.01, ϕ=0.34. Interviews (n=12) revealed that most dyads would continue to use the program (92%) and recommend it to others (83%). Reasons for app versus website preference among youth were ease of use, acceptable time commitment and interactivity. Barriers to caregiver engagement included high time burden and limited perceived relevance of content.

Conclusions:

This is one of the first studies to apply digital health analytics to characterize patterns of engagement with SCD self-management among youth and caregivers. Findings will be used to optimize the iCanCope with SCD program prior to release. Clinical Trial: ClinicalTrials.gov NCT03201874