iCanCope is a digital pain self-management platform that helps patients and caregivers easily manage pain episodes. It has been shown to help reduce the frequency and severity of SCD pain episodes. In addition, it can also help improve the quality of life for both patients and caregivers.
Sickle cell disease (SCD) is a group of inherited blood disorders characterized by abnormal hemoglobin, leading to sickling and early death of RBCs. These abnormally shaped RBCs clog small blood vessels, impeding blood supply and resulting in painful episodes and, ultimately, infarction. Digital delivery of SCD pain self-management support may help patients and caregivers easily manage pain episodes. iCanCope is a digital pain self-management platform delivered via a website and mobile app.
This randomized control trial was conducted over multiple SCD clinics in North America and published in the Journal of Medical Internet Research. This study aimed to determine patterns of involvement in the iCanCope with SCD program by youngsters with SCD and their caregivers.
English-speaking SCD patients aged 12–18 years having moderate to severe pain episodes were selected. English-speaking caregivers whose child was enrolled in the study were also selected. For 8-12 weeks, dyads were randomly assigned to either the iCanCope intervention or attention control education. Instructions on how to access the program were given to a total of 57 youth and 56 caregivers (56 dyads and one youth-only participant) who were randomized to the iCanCope with SCD intervention condition.
Among the 56 dyads that were given access to the iCanCope with SCD software, different usage habits were discovered. In 29% (16/56) of the dyads, both the adolescent and caregiver participated in the program. In 43% (24/56), the youth participated in the program without a caregiver (24/56, 43%). The caregiver participated in the intervention alone in one of the 56 pairs (2%), and neither participant did so in 29% (16/56) of the pairs. The one youth who enrolled in the research without a caregiver matched to them did not participate in the program. Most youngsters who were interviewed said they planned to keep using the iCanCope with SCD program in the future. Additionally, 60% of the youth who used the app gave it a rating of 5 stars, while 40% gave it a rating of 4 stars.
The youth mainly used iCanCope through the mobile app since it was convenient and interactive. Lack of time and limited content relevance were hurdles to caregiver engagement. There was a positive relationship between caregiver and child engagement. Those using the app (83% of dyads) stated that they would recommend it to other patients.
As SCD impacts multiple family members, program dissemination approaches focusing on the family unit may increase participation. Youth reported sharing program content with their siblings, and the participation of both parents and children was encouraging. By cooperating with SCD clinics, the program could be introduced to adolescents and their families as SCD symptoms worsen to assist them in coping.
The study concluded that the results would be applied to improve the iCanCope with SCD program prior to release. This could make it easier for families affected by SCD to access and use pain self-management support.
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
