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RECRUITINGINTERVENTIONAL

Peer Support for Adolescents and Emerging Adults With Sickle Cell Pain

Peer Support for Adolescents and Emerging Adults With Sickle Cell Pain: Promoting Engagement in Cognitive Behavioral Therapy

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

The study, known as the Peer suppoRt for adolescents and Emerging adults with Sickle cell pain: promoting ENgagement in Cognitive behavioral thErapy (PRESENCE), aims to determine the effectiveness of digital CBT in reducing pain, opioid use, and healthcare utilization among AYAs with SCD. It also seeks to understand the role of personalized peer support in enhancing engagement and outcomes of digital CBT interventions. By leveraging existing infrastructure for delivering virtual peer support interventions, tailored digital CBT programs for individuals with SCD, and partnerships with CBOs, the study aims to provide valuable insights into the feasibility and effectiveness of digital CBT as a pain management strategy for this vulnerable population.

Who May Be Eligible (Plain English)

Who May Qualify: 1. Aged 16 to 30 years of age at time of enrollment 2. Sickle Cell Disease diagnosis of any genotype based on referral or documentation 3. Reports chronic pain (≥4 days/week for past 3 months or more) OR A) Being prescribed pain medication to be taken (≥4 days/week for past 3 months or more) OR B) Taking pain medication (≥4 days/week for past 3 months or more) OR C) Receiving non-pharmaceutical pain treatment (≥4 days/week for past 3 months or more) 4. Access to an iOS or Android mobile device with internet access Who Should NOT Join This Trial: 1. Unable to speak or read English 2. Prior hematopoietic stem cell transplant for sickle cell disease Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
Inclusion Criteria: 1. Aged 16 to 30 years of age at time of enrollment 2. Sickle Cell Disease diagnosis of any genotype based on referral or documentation 3. Reports chronic pain (≥4 days/week for past 3 months or more) OR A) Being prescribed pain medication to be taken (≥4 days/week for past 3 months or more) OR B) Taking pain medication (≥4 days/week for past 3 months or more) OR C) Receiving non-pharmaceutical pain treatment (≥4 days/week for past 3 months or more) 4. Access to an iOS or Android mobile device with internet access Exclusion Criteria: 1. Unable to speak or read English 2. Prior hematopoietic stem cell transplant for sickle cell disease

Treatments Being Tested

BEHAVIORAL

CBT+ Health coach

Participants will complete the pre-enrollment clinical screening measures (PHQ-9M, GAD-7, and PEG-3) and will repeat those assessments, as well as outcome assessments, at 3 months, 6 months, and 12 months. Participants in CBT w/ Health coach group will engage with the CaRISMA app to complete a daily pain and mood e-diary, daily record of opiate use, and weekly assessment of pain via the Painimation tool. In addition participants will have weekly contact with a peer health coach.

BEHAVIORAL

CBT w/o Health Coach ( self-guided)

Participants will complete the pre-enrollment clinical screening measures (PHQ-9M, GAD-7, and PEG-3) and will repeat those assessments, as well as outcome assessments, at 3 months, 6 months, and 12 months. Participants CBT w/o Health coach groups will engage with the CaRISMA app to complete a daily pain and mood e-diary, daily record of opiate use, and weekly assessment of pain via the Painimation tool.

BEHAVIORAL

Usual Care

Participants will complete the pre-enrollment clinical screening measures (PHQ-9M, GAD-7, and PEG-3) and will repeat those assessments, as well as outcome assessments, at 3 months, 6 months, and 12 months. Participants in the UC group will be asked to engage with the CaRISMA app to complete a daily pain and mood e-diary, daily record of opiate use, and weekly assessment of pain via the Painimation tool. All other care will be at the discretion of their treating provider

Locations (14)

University of South Alabama Medical Center
Mobile, Alabama, United States
UCLA Mattel Children's Hospital Ronald Reagan Hospital
Los Angeles, California, United States
Connecticut Children's Medical Center
Hartford, Connecticut, United States
Children's Healthcare of Atlanta
Atlanta, Georgia, United States
Ann and Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, United States
The Regents of the University of Michigan
Ann Arbor, Michigan, United States
Rutgers New Jersey Medical School
Newark, New Jersey, United States
Weil Cornell Medical College
New York, New York, United States
University of Rochester Medical Center
Rochester, New York, United States
Wake Forest Baptist Hospital
Durham, North Carolina, United States
East Carolina University Health Medical Center
Greenville, North Carolina, United States
UPMC University of Pittsburgh Classical Hematology Adult Clinic
Pittsburgh, Pennsylvania, United States
UPMC Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, United States
Virginia Commonwealth University
Richmond, Virginia, United States