Sickle cell disease (SCD) is a disorder that individuals inherit from their parents. SCD affects the blood and causes the red blood cells to become hard, sticky, and deform into the shape of a sickle or crescent moon. These sickled cells often get stuck in blood vessels and stop the blood from flowing properly to important organs throughout the body, and very often, these sickled cells can lead to pain.
SCD affects about 100,000 people in the United States, and mostly impacts those belonging to racial minority groups or individuals who typically receive lesser quality health care. Many people living with SCD suffer from daily pain or unpredictable and sudden pain attacks that require immediate medical attention. Opioids or narcotic medication is the primary way that SCD pain is treated, and patients with SCD end up taking narcotic medications all their life. The narcotics do not work very effectively for pain long-term, and they have significant side effects. Persons living with SCD have told us that they want alternatives to narcotics for treating their pain. Several non-drug type treatments for pain exist that we know work; unfortunately, these behavioral or alternative treatments to pain are not being used in SCD.
Thus, in this project, we set out to test two behavioral pain interventions that are known to work for reducing pain symptoms but are yet to be tested in a large study of adults with SCD-related pain. The first intervention is cognitive behavioral therapy (CBT), which focuses on helping individuals manage their thoughts, emotions, and behaviors to better control their stress and pain. The second is pain education, which focuses on helping individuals learn more about their pain and the chronic condition causing their pain. We are going to test which of these two interventions is more effective for treating pain for adults with SCD in a trial where patients are randomly assigned to either CBT or pain education.
To accomplish this, we are going to deliver CBT and pain education to patients with SCD-related pain using smartphone apps that will allow patients to access the training programs on their own phones, wherever they want, whenever they want. Each participant will get a care coach to help them through the training program and they will participate in a virtual social support group.
The outcomes of most interest to us will be how much pain individuals experience day-to-day and how much their pain interferes with their daily life activities. We are also interested in whether these two behavioral programs have a positive effect on mental health, such as depression. This study and its findings will not only be important for the SCD community but will also help us find better ways to treat pain among all individuals suffering from chronic pain.
Other Clinical Interventions
Other Health Services Interventions
Training and Education Interventions
Individuals with Rare Disease
Individuals with Multiple Chronic/co-morbid Conditions
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.