JMIR Publications

ABSTRACT

Background:

Chronic pain is prevalent among adults with sickle cell disease (SCD) and can be worsened by psychosocial factors such as depression and inadequate social support. Effective behavioral interventions (i.e., cognitive behavioral therapy, CBT) exist for chronic pain in various populations; however, few have been developed to address chronic pain in SCD. Several barriers have restricted the development and dissemination of CBT pain interventions in SCD, such as limited accessibility and time constraints. Digital interventions provide accessible and cost-effective pain management tools, offering self-management strategies, real-time monitoring, and personalized treatment options. Yet, there is limited data regarding patients’ experiences with such intervention within the sickle cell population. The Comparing the Effectiveness of Education Versus Digital Cognitive Behavioral Therapy for Adults with Sickle Cell Disease (CaRISMA, clinicaltrials.gov NCT04419168) trial evaluated the effectiveness of a digital CBT intervention compared to a digital educational intervention for pain management in SCD.

Objective:

This study aimed to gain a deeper understanding of the lived experiences of participants in the CaRISMA trial and to determine how to better adapt this intervention to SCD population. The study examined individuals’ overall experience with the trial and their perspectives of the trial components, including a health coach, a chatbot-delivered digital CBT program, and an electronic pain diary.

Methods:

Respondents were randomly selected to participate in semi-structured interviews at 1) baseline, 2) at the end of the intervention period at 3 months, and 3) post-intervention timepoint, 6 months or beyond. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic analysis.

Results:

A total of 48 participants (68.8% F, n=33) completed baseline interviews. Among them, 21 participants took part in mid-trial interviews, and 17 completed post-intervention interviews. Participants generally had a positive experience, highlighting the safe space the study provided to speak openly about SCD. Many found value in learning about the connection between pain and mental health, considering it an important aspect of their well-being. Feedback indicated that the health coach played a key role in offering personalized support and guidance. While the chatbot reinforced pain management strategies, its usefulness and engagement varied based on participants’ prior knowledge of SCD. The pain diary helped increase self-awareness of pain patterns, but was perceived as tedious and irrelevant by those without current pain episodes.

Conclusions:

The CaRISMA trial showed that participants valued the personalized support of the health coach, education about the connection between stress and pain, and the self-reflection fostered by the pain diary. These findings highlight the potential of digital, patient-centered approaches to address the multifaceted needs of SCD care. For digital interventions, the inclusion of personalized support with ongoing communication appears to be critical component that can influence treatment adherence and effectiveness. Clinical Trial: clinicaltrials.gov NCT04419168