Key Findings
- Purpose
To evaluate digital cognitive behavioral therapy (CBT) versus usual care for reducing pain intensity and pain interference among adolescents and young adults with sickle cell disease (SCD), and to compare peer support versus no peer support within the digital CBT intervention. - Population (Model)
NIH-funded multisite trial recruiting 470 AYAs with SCD, ages 16–30 years, who report chronic pain defined as ≥4 pain days and/or pain medication use on ≥4 days during the prior three months. Participants are recruited through academically affiliated SCD clinics, community-based organizations, and virtual outreach across the United States. - Headline Result
The PRESENCE Trial is designed to compare digital CBT versus usual care while also evaluating whether peer-support coaches with lived SCD experience improve engagement with the CaRISMA intervention. Peer coaches are intended to help participants develop personalized symptom-awareness and management plans while monitoring progress over time. Outcomes include pain intensity, pain interference, healthcare utilization, opioid use, depression, anxiety symptoms, stigma, and self-efficacy over up to 12 months of follow-up. - Why It Matters
Chronic pain is a major challenge for many adolescents and young adults with SCD, particularly during transition to adult care. Digital CBT may offer a scalable, non-pharmacologic approach to supporting pain-coping skills and long-term self-management, especially for patients with limited access to behavioral-health resources.
- Evidence Gaps & Limitations
This publication describes a study protocol rather than clinical outcomes. The authors highlight ongoing questions regarding long-term engagement, clinician and patient familiarity with digital behavioral-health interventions, comparative effectiveness versus standard care, and broader implementation considerations for SCD care settings.
Source: Journal of Sickle Cell Disease- “Protocol for a Multisite Trial Evaluating Digital Cognitive Behavioral Therapy With and Without Peer Support Among Adolescents and Young Adults With Chronic Sickle Cell Pain”
Regulatory & Guideline Watch
American Society of Hematology guidance for chronic pain in SCD supports comprehensive care approaches that incorporate cognitive, behavioral, and other nonpharmacologic strategies alongside medical management. However, evidence specific to digital CBT platforms and peer-supported digital interventions in SCD remains limited, underscoring the importance of prospective studies such as PRESENCE.