$tagsList = ['Hidradenitis Suppurativa','Hives','HIV/AIDS','Psoriatic Arthritis','Psoriasis']; $catList = ['Hidradenitis Suppurativa','Hives','HIV/AIDS','Psoriatic Arthritis','Psoriasis']; Skip to main content

Children and youth with sickle cell disease (SCD) can benefit from digital interventions for self management of their disease. One study assessed the engagement and usefulness of a digital intervention in youth with SCD.

Sickle cell disease (SCD) is marked by episodes of sudden, severe pain and increased risk for chronic pain. A digital platform called iCanCope helps youth with SCD and their caregivers develop coping skills for managing pain. The program can be accessed through a website (with different versions for youth and caregivers) and a mobile app (youth only).

Multiple SCD clinics in North America took part in a randomized trial to find out how youth and their caregivers engage with self-management. Youth and their caregivers were given either the iCanCope intervention or control education for 8 to 12 weeks.

Different patterns of use were seen: in 29%, both the youth and the caregiver used iCanCope, in 43%, only the youth did, in 2%, only the caregiver did, and in 29%, neither the youth nor the caregiver did. While the majority of youth participated in the program, the majority of caregivers did not.

Youth were more likely to use the app (85%) than the website (68%), with goal setting, program introduction, and symptom history being the most popular content categories. The topics that caregivers liked the most were the introduction to the program, behavior plans, and goal setting.

Additionally, there was a moderate positive association between caregiver and youth engagement. About 92% of users would continue to utilize the program, and 83% would recommend it to others.

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This was one of the first studies to investigate the use of digital analytics for determining patterns of use for SCD self-management techniques in youth and caregivers. The results will be used to improve the iCanCope with SCD program before it is released.

Reference
Lalloo, C., Nishat, F., Zempsky, W., Bakshi, N., Badawy, S., Ko, Y. J., . . . Palermo, T. M. (2022). 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. Journal of Medical Internet Research, 24(8), e40096. doi:10.2196/40096