Evaluating Digital CBT for Sickle Cell Disease: Insights From the CaRISMA Trial

For adults living with sickle cell disease (SCD), chronic pain is often compounded by depression, isolation, and logistical barriers to care. Digital behavioral health tools—like cognitive behavioral therapy (CBT) apps, chatbots, and symptom trackers—promise scalable support, but how well do they actually serve this population?

A qualitative sub-study of the CaRISMA trial, which tested a multicomponent digital intervention for SCD pain management, sheds light on what resonates with patients—and where current models fall short.

What Patients Appreciated Most: Connection, Clarity, and Control

Across interviews with 48 participants, a few themes stood out:

• Health coaches made the difference. Patients valued that their coach often had lived experience with SCD. This fostered trust and a sense of being understood. In several cases, coach interactions motivated participants to seek mental health support beyond the study.
• Linking pain and mental health was eye-opening. For many, this was the first time they saw their physical pain validated as part of a broader biopsychosocial experience.
• Flexibility was critical. Participants appreciated when coaches adapted to their unpredictable symptoms, offering text check-ins or rescheduling on short notice. They wanted more of that kind of on-demand support.

Where Digital Tools Missed the Mark

Despite the promise of tech-based tools, engagement with some components lagged:

• The chatbot felt generic to some. While newer patients appreciated the structured education, others with more knowledge of SCD found it repetitive.
• The pain diary was both helpful and tiring. Daily symptom logging increased self-awareness for some, especially when they could share their data with providers. But others found it tedious, especially on pain-free days. Patients wanted more flexible tracking options.
• Social media delivery had mixed reviews. Embedding the chatbot in social media made it accessible for some, but others requested a standalone app that didn’t depend on social media at all.

Implications for Digital Pain Interventions in SCD

The CaRISMA trial points to a key takeaway: human-centered design must be more than a buzzword. Interventions need to adapt to patients’ lived realities—variable pain, complex emotions, and different levels of health literacy.

Future iterations could include:

• More flexible coach engagement, including on-demand support by phone or video.
• Chatbots that adapt content and tone based on user knowledge, pain levels, or emotional state.
• Customizable tracking tools, where users can select frequency and log other relevant symptoms (like fatigue or mood).

Digital behavioral interventions can offer real value for adults with SCD—but only if they feel personal, relevant, and responsive. In a space where many patients are still underserved, the tools that succeed will be the ones that meet people where they are—and stay with them as their needs evolve.

Reference:
Oluwole OB, McGill LS, Gayle K, et al. Experiences with a multicomponent digital behavioral pain management intervention for adults with sickle cell disease: Qualitative analysis of the CaRISMA trial. JMIR Hum Factors. 2025;12:e73719. doi:10.2196/73719