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Tired of pain?
Research offers hope for new ways to manage chronic pain in sickle cell disease

About the Study

CaRISMA is a national study conducted to provide non-drug interventions that are affordable, easily accessible, and effective through a mobile application to improve the quality of life and well-being of those living with sickle cell disease (SCD).

Welcome to CaRISMA

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Background

The hidden battle – living with sickle cell disease and chronic pain.
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Purpose/Goal

The power of therapy in managing sickle cell pain and mental health.

Digital CBT vs. digital education

Different approaches to teaching coping skills.
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Pain is the most common symptom.

Sickle cell disease (SCD) is a genetic disorder that affects millions worldwide and over 100,000 people in the United States – a rare patient population that hugely experiences health disparities because it disproportionately affects predominantly underserved communities.

Unfortunately, current standards for pain management in SCD are inadequate, and are heavily reliant on medications such as opioid use – leading to dependency, the risk for potential side effects, and unknown implications long-term (both mental and physical).

Up to 87% of adults and up to 44% of children under 6 years old with SCD have been prescribed opioids.

On top of that, mental health is often ignored in SCD, despite many patients experiencing depression and anxiety. Mental health is rarely assessed or treated in SCD, although 22% to 57% of patients with SCD have clinically significant symptoms of depression, and potentially, even more, patients suffer from anxiety symptoms.

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Can therapy help pain?

Effective and non-drug interventions such as cognitive behavioral therapy (CBT) are urgently needed.

What is CBT? CBT helps individuals learn how to recognize their negative thoughts and emotions, use cognitive skills and problem-solving, and cope with pain using techniques (e.g., distraction, scheduling activities, and relaxation.)

CBT is the gold standard of behavioral approaches and non-pharmaceutical treatment for managing chronic pain and routinely used in treatment for other pain populations.

However, there are several barriers to the widespread implementation of CBT, including availability, accessibility, high-cost, and stigma surrounding mental health. To address these barriers, the goal of this study was to make the interventions affordable, easily accessible, and effective through an easy-to-use mobile app that can be incorporated into a daily routine for better pain management and improved mental health.

Additionally, using digital interventions when accompanied by the support of a health coach not only overcomes these barriers, but it can be just as effective as it is in-person.

The study compared the effectiveness of the two mobile phone-delivered programs in reducing SCD pain symptoms: digital CBT vs. digital education.

The comparison between the two programs is based on their approach to teaching coping skills. The digital CBT program teaches skills through practical experience by “seeing and doing,” while the digital education program teaches skills through education by “learning and knowing” – teaching users about chronic pain, healthy lifestyle habits (e.g., nutrition and exercise), and facts about SCD.

The study aims to determine which approach is more effective.

The image shows a visual of how CBT and education can help people living with SCD.

Because of the tremendous effort of the sickle cell community, as of 12/5/2022, enrollment for the CaRISMA trial has surpassed its recruitment target. Many thanks to the warriors, and the community and academic organizations. We look forward to sharing our experience and results with the Sickle Cell community in 2023. Thank you so much for your interest.

A non-drug trial for Sickle Cell Disease

Video Lessons

Learn about SCD or Cognitive behavioral therapy (CBT) via short interactive video lessons.

Health Coach

Check-in regularly with your own personal health coach.

Celia

Progress through the program at your own pace. Celia the bot will always be there when you return.

Warrior Stories

Watch real patients, not actors, discuss their experiences with SCD.

Pain Diary

Record and track trends in your daily pain and mood.

Toolbox and Badges

Unlock badges and access content from previous lessons.

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