Funded Projects Template

Improving Awareness of SCD Curative Therapies

Project Year

2022

City & State

Washington, DC

Program Name

CATCH Implementation

Topic

Health Disparities

Program Description

The problem: Sickle cell disease (SCD) is an inherited blood disorder that affects over 100,000 individuals in the United States. It occurs predominately in individuals of African, Mediterranean, Indian, and Middle Eastern descent (Sund et al, Ware et al) and is the most common genetic disease affecting African Americans (AAs) in the United States. Individuals with sickle cell disease have a reduced life expectancy and face disproportionate health disparities with individual and societal costs. Hematopoietic stem cell transplant (HSCT) is a well-established cure for SCD with favorable outcomes (>90% cure rates) when using a Human Leukocyte (HLA) identical sibling donor. Historically, HSCT was only offered to patients with SCD who had suffered severe complications; however, given improved HSCT outcomes, it is now reasonable to consider HSCT for most patients with SCD who have an HLA-identical sibling, with each full sibling having a 25% chance of being a match. Over the last decade, the use of HSCT in sickle cell disease has significantly increased as we have seen indications for HSCT expand and the evolution of alternative graft sources and less intensive conditioning regimens. However, these advancements have led to healthcare-related disparities in those with knowledge of and access to these curative therapies resulting in clinical, ethical, and policy implications. Primary Setting: The primary setting where this implementation project will occur is in the Washington, DC, Maryland, and Virginia (DMV) metropolitan area. Number of children affected: The DMV Sickle Cell Disease Consortium estimates ~3,400 children and young adults with SCD within the DMV area. Through a partnership with the Maryland Sickle Cell Disease Association (MSCDA), we will have access to their vast network of individuals with SCD and caregivers and work together to identify key stakeholders for information dissemination with particular attention to those from socioeconomically disadvantaged neighborhoods. Project goal: To identify barriers and knowledge gaps of curative therapies to inform the creation of an educational initiative to ultimately improve community education and access to HSCT as a curative option for patients with SCD in disadvantaged neighborhoods. Proposed intervention: This intervention has 3 phases that will culminate in the creation of SCD curative therapy educational materials and a curative therapy campaign. We will create four focus groups, including individuals with SCD and/or their caregivers with particular attention to recruitment from disadvantaged areas. The first phase will identify barriers to curative therapy. The first two focus groups will complete surveys to identify barriers and provide feedback on current material to inform the creation of educational materials. In phase 2, education materials will include a 3–5-minute education video and an updated 12-page pamphlet on curative therapies for SCD. The third phase will utilize two focus groups to assess the impact of expanded access to curative therapy education material on knowledge of curative therapies. This curative therapy education initiative and HLA typing campaign will be created and implemented in partnership with MSCDA. This provides a network of stakeholders, including patients and advocates across the DMV area, to directly inform the campaign's design, recruit patients through their relationships with community organizations and community health workers, broaden outreach on a local and regional level, and ensure plans for sustainability. Anticipated outcomes: By the conclusion of our project, we will have educational materials that have been vetted and reviewed by the patient population and families that it will serve, particularly those from disadvantaged neighborhoods. These materials will lead to measurable increases in knowledge and accessibility to HLA-typing and thus curative therapies for SCD, as assessed by focus group surveys.

Project Goal

Our project aims to broaden access to education materials and enhance knowledge of HSCT as a curative therapy to the SCD population. To accomplish this, we propose a patient and caregiver assessment of current knowledge and perceptions around HSCT as a curative therapy for sickle cell disease to identify barriers in seeking these therapies. Secondarily, we will assess whether improved access to education resources with an education pamphlet and video improves patient and caregiver understanding of curative therapies. Importantly, because this is the first investigation into barriers to curative therapies, our intervention will carry further implications for guiding future interventions to address these health disparities. This will involve the creation of an educational video, updating educational handouts, and strategizing with stakeholders and consultants on how to disseminate information to the intended target population. The project estimates recruiting 40 participants for four focus groups, 3 community organization stakeholders, 5 primary care clinics, and 2 experts from national SCD/HSCT organizations. Our future goal is that the educational video to be streamed on social media or at events by at least 1000 patients and their families throughout the DMV area within the first 6 months. Electronic educational materials allow it to be publicly available and quickly disseminated locally and domestically.

Project Objective 1

By August 2022, 10 local stakeholders/advocates within the CNH and surrounding communities will recruit and offer gift card incentives to at least 10 children and young adults (age 12-21) with SCD (1 focus group) and 10 caregivers (1 focus group) who will form the first set of focus groups and identify at least 10 barriers to HLA-typing and SCD curative therapies.

Project Objective 2

By March of 2023, we will have contracted with a scriptwriter and cinematographer and completed the production of our curative therapy education video and a 12-page education pamphlet for subsequent review by the 10 stakeholders and the final round of focus group participants.

Project Objective 3

By April 2023, we will assess the impact of our educational materials [i.e., updated HSCT and HLA typing pamphlet (printed and electronic) and educational video] via pre vs. post focus group surveys administered to at least 10 youth (age 12-21) with SCD (1 focus group) and 10 caregivers (1 focus group) and demonstrate at least a 25% increase in knowledge of curative therapies.

AAP District

District III

Institutional Name

Children's National Hospital

Contact 1

Olufunke Martin