Project Summary

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Sickle cell disease, or SCD, is an inherited blood disease. In SCD, blood cells have a sickle shape that may cause blood cells to lodge in small blood vessels. SCD can cause both daily chronic pain and sudden severe pain that requires prompt medical care. The main way that doctors treat SCD pain is with opioids. But opioids can have serious side effects and don’t work well to treat long-term pain.

In this study, the research team is comparing two ways to treat SCD pain that don’t involve opioids. Both ways are effective at treating pain for other health problems. The first way is cognitive behavioral therapy, or CBT. CBT helps patients learn to change patterns in their thinking to better manage their pain. The second is pain education, which teaches patients about SCD and its symptoms.

Who can this research help?

Results may help patients, doctors, and clinic directors when considering ways to treat SCD pain.

What is the research team doing?

The research team is recruiting 350 adults with SCD and chronic pain from clinics and community-based organizations. The team is assigning patients by chance to receive 12 months of either CBT or pain education.  

In both programs, patients receive information via a smartphone or mobile device at a time that works for them. Patients also use their smartphone or mobile device to track their daily pain, mood, and medicines. Patients receive weekly follow-up with a health coach who helps them identify goals, develop coping strategies, and make healthy lifestyle changes. Patients can take part in an online Facebook group to discuss issues related to SCD with other patients.

In the CBT program, patients learn how to recognize negative thoughts and emotions, solve problems, and use coping behaviors such as relaxation techniques. In the pain education program, patients learn about chronic pain and SCD and get healthy lifestyle tips.

The research team is surveying patients about their day-to-day pain, how much their pain interferes with their daily activities, and their mental health. The team is comparing how well CBT and pain education improve these outcomes.

Patients, family members, community-based organizations, SCD clinical care teams, and members of SCD advocacy groups are helping to design and conduct the study.

Research methods at a glance

Design Elements Description
Design Randomized controlled trial
Population 350 adults with SCD who report chronic pain (pain more days than not for more than 3 months)
  • CBT via smartphone app
  • Pain education via smartphone app

Primary: daily pain intensity, pain interference

Secondary: depressive symptoms, healthcare utilization (opioid prescriptions, acute care visits), opioid misuse behaviors 

Timeframe Timeframe Length of follow-up for collecting data on primary outcomes. View Glossary 12-month follow-up for primary outcomes

Project Information

Charles Jonassaint, PhD, MHS
Kaleab Z. Abebe, PhD
University of Pittsburgh
Comparing Two Ways to Help Patients with Sickle Cell Disease Manage Pain

Key Dates

April 2019
August 2024

Study Registration Information


Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: October 18, 2023