Peer suppoRt for adolescents and Emerging adults with Sickle cell pain: promoting ENgagement in Cognitive behavioral thErapy - Abstract. Pain is the clinical hallmark of sickle cell disease (SCD), yet pain management remains inadequate
for many in this population due to lack of evidence-based pain treatment approaches for SCD, and due to
stigma and implicit bias in the healthcare system. Black adolescents and young adults (AYAs, ages 16-30) with
SCD are particularly vulnerable as they endure repeat hospitalizations due to pain crises while coping with
stigma and related stressors, as well as the other challenges of transitioning to adulthood. Opioids are the
primary agent used in chronic SCD pain management, despite evidence that they provide poor long-term relief
and lead to negative physical and psychological consequences. Psychosocial interventions that teach cognitive
and behavioral strategies can simultaneously reduce pain and stigma and enhance mood in patients with SCD.
Cognitive behavioral therapy (CBT) is the primary behavioral health approach to managing pain in the general
population, and digital CBT has expanded its accessibility. In SCD and other minority populations, we have
demonstrated that a low-cost, scalable, technology-delivered version of CBT is feasible and can be effective
for addressing stress and pain. We have learned that personalized support can improve engagement with
digital CBT. We will now test a personalized approach customized for AYAs with SCD using peer support
delivered through community-based organizations (CBOs). We will conduct a multisite, randomized controlled
trial of digital CBT to understand the level of support needed to achieve benefits for reducing pain and stigma.
Our Peer suppoRt for adolescents and Emerging adults with Sickle cell pain: promoting ENgagement in
Cognitive behavioral thErapy (PRESENCE) study aims to reduce pain, opioid use, and healthcare utilization
among AYAs with SCD. During the UG3 phase, we will leverage an established infrastructure for delivering
virtual peer support interventions, existing digital CBT programs tailored by and for people with SCD, and
partnerships with CBOs to jointly refine the study design, digital CBT content, and peer support component and
work with the HEAL ERN CCC and DCC to prepare for the UH3 trial. After meeting UG3 milestones and
transitioning to the UH3 phase, we will randomize 470 AYAs with frequent pain (³4 days/wk) over the past ³3
months to one of 3 treatment groups: 1) a digital CBT program with weekly one-on-one peer support provided
via text and/or telephone based on participant preference (CBT+peer), 2) the same digital CBT program
without peer support (self-guided CBT), or 3) usual care (UC). We first hypothesize that AYAs receiving either
digital CBT treatment (CBT+ peer or self-guided CBT) will have better pain and mental health outcomes than
AYAs receiving UC at 6 months. Second, we hypothesize that CBT+peer will be associated with improved
program engagement and pain and mental health outcomes at 6 months compared with self-guided CBT. The
PRESENCE trial will determine effectiveness of digital CBT for pain management among AYAs with SCD, a
critical step toward future wide-scale deployment as part of routine SCD care.
