Peer Support for Adolescents and Emerging Adults With Sickle Cell Pain

NCT ID: NCT06374238

Last Updated: 2025-11-06

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

470 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-03-10

Study Completion Date

2028-05-31

Brief Summary

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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.

Detailed Description

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The PRESENCE study aims to address the pressing issue of inadequate pain management for adolescents and young adults (AYAs) with sickle cell disease (SCD). Despite pain being the primary clinical symptom of SCD, effective treatment options are limited, leading to repeated hospitalizations and negative impacts on patients' physical and mental well-being. Opioids, the primary treatment for chronic SCD pain, often fail to provide long-term relief and can result in harmful consequences.

Recognizing the need for alternative approaches, the study hopes to investigate the effectiveness of digital cognitive behavioral therapy (CBT), both with and without personalized peer support delivered through community-based organizations (CBOs). CBT is a well-established method for managing pain in the general population, and digital CBT has shown promise in improving outcomes for individuals with chronic conditions.

The study will involve a multisite, randomized controlled trial with 470 AYAs with SCD who have experienced frequent pain over the past three months. Participants will be randomized into one of three groups:

1. Digital CBT with weekly one-on-one peer support (CBT+peer)
2. Digital CBT without peer support (self-guided CBT)
3. Usual care (UC)

The primary hypotheses of the study are:

Hypothesis 1. AYAs receiving any digital CBT (CBT + peer or self-guided CBT) will have greater improvements in primary pain outcomes (PEG-3 pain intensity and pain interference), and larger decreases in secondary pain outcomes (mean daily pain intensity, pain days, average weekly opioid dose, emergency department visits, hospitalizations) and in psychological outcomes (MoSCS internalized stigma, SCSES sickle cell self-efficacy, PHQ-9M depression, GAD-7 anxiety) than AYAs receiving UC at 6 months post initiation of intervention.

Hypothesis 2. AYAs receiving CBT + peer will have greater improvements in the primary and secondary outcomes described above at 6 months, and greater app engagement, than AYAs receiving self-guided CBT.

This study will have the following assessment time points.

* Baseline = pre-randomization baseline measures

o Rescreen if SCD verification is not provided within 30 days
* At Randomization = Pain and mood diary using Ecological Momentary Assessment (EMA) assessed daily for a total of 14 days with the first entry occuring immediately prior to randomization/intervention start and then continuing daily post-randomization
* 3-month = end of intervention period assessment 90 days (3 months) post -randomization
* 6-month = primary endpoint 180 days (6 months) post-randomization
* 12-month = long-term endpoint 365 days (12 months) post-randomization

The study intervention and EMA data collection is performed via an iOS and Android application called CaRISMA that will be called "the app" or the "CaRISMA app" hereafter.

Conditions

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Pain Sickle Cell Disease

Keywords

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Sickle Cell Disease Pain management Cognitive Behavioral Therapy Wellness

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Three-arm, phase III randomized controlled effectiveness trial. Participants will be randomized 3:3:2 into (1) CBT + peer, (2) self-guided CBT, or (3) UC, stratified by site
Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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CBT w/ Health Coach

Group will utilize the Presence app to undergo self CBT for EMA, but with addition of peer health coaches.

Group Type EXPERIMENTAL

CBT+ Health coach

Intervention Type BEHAVIORAL

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.

CBT w/o Health coach (self-guided)

Group will utilize the Presence app to undergo self-guided CBT for EMA, but without peer health coaches.

Group Type ACTIVE_COMPARATOR

CBT w/o Health Coach ( self-guided)

Intervention Type BEHAVIORAL

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.

Usual Care with no access to CBT

Participants in the UC group will have access to 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

Group Type ACTIVE_COMPARATOR

Usual Care

Intervention Type BEHAVIORAL

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

Interventions

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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.

Intervention Type 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.

Intervention Type 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

Intervention Type BEHAVIORAL

Other Intervention Names

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CBT+peer

Eligibility Criteria

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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
Minimum Eligible Age

16 Years

Maximum Eligible Age

30 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Heart, Lung, and Blood Institute (NHLBI)

NIH

Sponsor Role collaborator

University of Pittsburgh

OTHER

Sponsor Role lead

Responsible Party

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Charles Jonassaint

Associate Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Charles Jonassaint, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Pittsburgh

Ana Radovic, MD

Role: PRINCIPAL_INVESTIGATOR

University of Pittsburgh

Alicia Colvin, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Pittsburgh

Locations

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University of South Alabama Medical Center

Mobile, Alabama, United States

Site Status RECRUITING

UCLA Mattel Children's Hospital Ronald Reagan Hospital

Los Angeles, California, United States

Site Status RECRUITING

Connecticut Children's Medical Center

Hartford, Connecticut, United States

Site Status RECRUITING

Children's Healthcare of Atlanta

Atlanta, Georgia, United States

Site Status RECRUITING

Ann and Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status RECRUITING

The Regents of the University of Michigan

Ann Arbor, Michigan, United States

Site Status RECRUITING

Rutgers New Jersey Medical School

Newark, New Jersey, United States

Site Status RECRUITING

Weil Cornell Medical College

New York, New York, United States

Site Status RECRUITING

University of Rochester Medical Center

Rochester, New York, United States

Site Status RECRUITING

Wake Forest Baptist Hospital

Durham, North Carolina, United States

Site Status RECRUITING

UPMC University of Pittsburgh Classical Hematology Adult Clinic

Pittsburgh, Pennsylvania, United States

Site Status RECRUITING

UPMC Children's Hospital of Pittsburgh

Pittsburgh, Pennsylvania, United States

Site Status RECRUITING

Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Steffi Siebert, MPH

Role: CONTACT

Phone: 877-649-0176

Email: [email protected]

Facility Contacts

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Jessica King

Role: primary

T'Shemika Perryman

Role: backup

Debbie Argueta Rufino

Role: primary

Christopher Theriault

Role: primary

Katyria Thornton

Role: primary

Vontarius Howard Jesse

Role: backup

Kevin Guerrero

Role: primary

Anela Mukherjee

Role: primary

Kim White

Role: primary

Masiel Infante

Role: primary

Priya Kaushal

Role: primary

Julie Fountain

Role: primary

Steffi Siebert, MPH

Role: primary

Alex Berkebile

Role: primary

Amy Travis

Role: backup

Danie Sop, PhD

Role: primary

Other Identifiers

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UG3HL165839

Identifier Type: NIH

Identifier Source: secondary_id

View Link

STUDY24040171

Identifier Type: -

Identifier Source: org_study_id