Study Finds Engagement Higher in Children Than Caregivers With Digital Program for SCD Self-management

While 70% of youth engaged with the sickle cell disease (SCD) pain self-management program, only 30% of caregivers engaged with it.

A digital intervention that delivers self-management support for pain to youth with sickle cell disease (SCD) had a moderate positive association between child and caregiver engagement, a study published in the Journal of Medical Interest Research reported.

According to the authors, this study is one of the first to apply digital health analytics to characterize patterns of engagement with SCD self-management among youth and caregivers.

The program iCanCope With Pain is a digital pain self-management platform delivered via website and mobile app, with the app only used by the child with SCD themselves but the website accessible to both the child and caregiver. The platform was originally developed for youth with chronic pain and was adapted for youth with SCD through a user-centered design approach.

While the iCanCope With SCD program is currently undergoing efficacy testing through a multicenter randomized clinical trial, this report focused on engagement with the digital intervention during the trial.

To evaluated engagement patterns with the program, the authors included 57 children and 56 caregivers in the study, establishing 56 dyads and 1 youth-only participant. All children and caregivers spoke English, and all children were experiencing moderate to severe pain interference.

The youth participants were aged between 12 and 18 years, with almost all being in middle school or high school. Additionally, 47/57 (82%) reported daily smartphone use. The study cohort was primarily female, making up 60% of youth and 91% of caregivers enrolled. Further, more than 90% of both youth and caregivers were Black. More than half of dyad households included 1 or 2 children under 18 years of age, and the majority had an annual household income of less than $75,000.

Dyads were randomized to receive either the digital intervention or attention-control education for 8 to 12 weeks. While part of a larger study, this report focused on engagement among those who received the intervention.

Of 56 dyads, the authors found both the youth and caregiver engaged in 16 (29%) of them, but only the youth engaged in 24 (43%) of them. There was only 1 dyad where only the caregiver engaged with the program but a high amount of 16 (29%) of dyads saw no use from either party.

Of the 57 youth, 40 (70%) engaged with the program, while only 17/56 (30%) of caregivers engaged with it.

The authors conducted interviews with 20% of the participating child-caregiver dyads. Despite moderately low engagement from caregivers overall, most dyads in the interview said they would continue using the SCD pain self-management program (92%) and recommend the program to others (83%).

The authors also found that youth with SCD were more likely to engage with the overall program compared with their caregivers, and were more likely to use the app than the website.

“The reasons for app versus website preference among youth were ease of use, acceptable time commitment, and interactivity,” the authors mentioned. “Barriers to caregiver engagement included high time burden and limited perceived relevance of content.”

The authors noted differences in intervention scope, definitions of engagement, study design, clinical population, and technology type may explain the varying engagement patterns across other similar studies. This includes research on other SCD digital interventions, the SCD population in general, and the pediatric population as a whole.

“The literature suggests that treatment adherence among youth with SCD may be impacted by forgetfulness, side effects of pharmacological interventions (eg, nausea, heart racing, and taste aversion), questioning efficacy of treatment, and a desire to be ‘normal,’ and some of these factors may similarly impact adherence to digital health interventions,” they wrote, citing past research. “Previous literature also suggests that sociodemographic factors can impact engagement with digital interventions, highlighting lower rates of engagement among racial or ethnic minorities, and those with low socioeconomic status.”


Lalloo C, Nishat F, Zempsky W, et al. 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. J Med Internet Res. 2022;24(8):e40096. doi:10.2196/40096

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