Resilience Intervention for Sickle Cell Disease
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial tests a new approach to help young people with sickle cell disease (SCD) manage their condition and improve their well-being. The focus is on a resilience-building program called "Promoting Resilience in Stress Management," which provides skills training to handle stress and challenges. Researchers aim to determine if participants can easily use this program and whether it reduces depression, anxiety, and pain. Individuals with SCD who frequently experience anxiety or depression might be a good fit. Participants should receive care at the DFCI/BCH Blood Disorders Center and be able to communicate in English or Spanish. As an unphased trial, this study offers a unique opportunity to contribute to innovative research that could enhance the quality of life for those with SCD.
Will I have to stop taking my current medications?
The trial information does not specify whether you need to stop taking your current medications. It is best to discuss this with the trial coordinators or your doctor.
What prior data suggests that this resilience intervention is safe for adolescents and young adults with sickle cell disease?
Research has shown that programs designed to build resilience in people with sickle cell disease (SCD) focus on managing stress and solving problems. These programs aim to boost both emotional and physical health. People who learn resilience skills often find it easier to manage chronic illnesses like SCD. Although specific safety data is not available, these programs are generally considered low-risk. They focus on teaching skills and strategies, unlike taking medication or undergoing a medical procedure. Participants learn to cope with stress and set goals, enhancing their quality of life.12345
Why are researchers excited about this trial?
Researchers are excited about the Resilience Intervention for Sickle Cell Disease because it takes a fresh approach by focusing on mental resilience rather than just physical symptoms. Unlike typical treatments that primarily address pain and physical complications through medications like hydroxyurea and blood transfusions, this intervention combines the Collaborative Care Model with PRISM, a skills-based program that builds resilience resources. This unique method involves an inter-professional team delivering personalized, one-on-one stress management techniques, aiming to improve overall quality of life for patients by equipping them with tools to handle stress better.
What evidence suggests that the PRISM intervention is effective for sickle cell disease?
Research shows that activities designed to build resilience can help manage stress for people with sickle cell disease (SCD). Studies have found that these activities improve emotional health by reducing anxiety and depression, common in individuals with SCD. Additionally, resilience-building techniques help manage pain, often inadequately treated in teenagers and young adults with SCD. Evidence suggests that focusing on resilience leads to better overall well-being and may improve health outcomes for those with SCD. In this trial, participants will receive the PRISM intervention, a brief, skills-based program targeting resilience resources, as part of the CoCM+PRISM treatment arm. This approach aims to equip patients with skills to handle stress more effectively, enhancing their quality of life.12678
Are You a Good Fit for This Trial?
This trial is for adolescents and young adults aged 12 to 25 with Sickle Cell Disease who are experiencing depression or anxiety. They must be getting care at the DFCI/BCH Blood Disorders Center, able to participate in sessions, complete surveys in English or Spanish, and adhere to the study schedule.Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Treatment
Participants receive the PRISM intervention through a Collaborative Care Model
Follow-up
Participants are monitored for feasibility, acceptability, and satisfaction of the intervention
What Are the Treatments Tested in This Trial?
Interventions
- Promoting Resilience in Stress Management
Trial Overview
The study is testing a resilience-promoting intervention called PRISM within a Collaborative Care Model for those with SCD. It aims to see if this approach is workable and helpful in improving mental health and reducing pain interference.
How Is the Trial Designed?
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Treatment groups
Experimental Treatment
Collaborative Care Model (CoCM) includes a care manager, a defined population of patents/registry for tracking inclusion and progress, validated patient-reported outcome measures, and weekly inter-professional team meetings. This arm includes the use of an inter professional team to triage, plan and deliver care. the PRISM intervention, a brief, skills-based program targeting 4 resilience resources, will be delivered 1:1 as part of this treatment arm.
Find a Clinic Near You
Who Is Running the Clinical Trial?
Boston Children's Hospital
Lead Sponsor
National Institutes of Health (NIH)
Collaborator
Citations
Promoting Resilience Among Adolescents and Young ...
This study proposes to test the feasibility and acceptability of a resilience-promoting intervention through a Collaborative Care Model.
Managing emotional and physical stress in sickle cell anemia
This review article explores effective strategies for managing both the emotional and physical aspects of stress in SCA patients.
“Resilience?” perspectives from adults living with sickle cell ...
In the current study, we focus on exploring psychological resilience within an adult population living with SCD in the United States (U.S.). It is important to ...
Resiliency in Child–Caregiver Dyads and the Impact on ...
We hypothesized that caregiver perceived stress and resiliency are related to the resiliency of children with SCD and may influence SCD clinical outcomes.
Project Details
Over 60% report insufficiently treated pain. AYAs with Sickle Cell Disease (SCD) are at particularly high-risk; their pain, anxiety, depression, and impaired ...
Resiliency in Child–Caregiver Dyads and the Impact on ...
Sickle cell disease (SCD) is another chronic illness where resiliency has been associated with improved outcomes in children.
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researchgate.net
researchgate.net/publication/390061718_Resiliency_in_Child-Caregiver_Dyads_and_the_Impact_on_Health_Outcomes_in_Sickle_Cell_Disease(PDF) Resiliency in Child–Caregiver Dyads and the Impact ...
Background/Objectives: Resiliency is critical in coping with stressors associated with chronic health diseases. Sickle cell disease (SCD) is a chronic blood ...
Adolescents' Perspectives on Sickle Cell Self-Care Management
The purpose of this study was to gather the perspectives of adolescents living with SCD and to describe their self-care management experiences prior to their ...
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