Barriers to the Use of Disease-Modifying Treatments in Sickle Cell Disease
Sick Cells partnered with the University of Pittsburgh to conduct a survey to understand the barriers to accessing disease-modifying SCD treatments (DMTs).
Project Goal
Many current DMTs remain underutilized. By understanding existing barriers to current DMTs, new insights will be gained to inform strategies to improve utilization.
Project Timeline
This survey was conducted in 2022.
Scope & Methods
The survey was administered to individuals living with SCD and caregivers. The survey had 100 participants. Of these people, 66 were people living with sickle cell disease and 34 were caregivers.
Survey participants were asked to share their thoughts, beliefs, and experiences regarding the management and treatment of SCD. Participants were given a series of statements and asked to rate their level of agreement or disagreement. These statements covered various topics, including their own beliefs towards how DMTs will affect their health and experiences with disease-modifying treatments as well as the impact of the healthcare system on their access to these treatments and overall care.
For the second part of this study, we held focus group sessions with 10 individuals with SCD and caregivers of warriors. During these sessions, we analyzed topics uncovered in the survey to gain a more thorough understanding of the warrior and caregiver perspective with DMTs.
Results
80% of survey respondents said they had a good understanding of disease-modifying treatments for sickle cell disease. However, 64% also believed they needed more information on DMTs. 85% of respondents reported that they were worried about the side effects associated with these treatments. When looking at how the health system affects access to treatments, 30% of respondents reported that their insurance frequently prevents access to sickle cell DMTs and 40% reported that the cost of treatment prevents access to healthcare.
Thank you to our participants living with sickle cell disease who participated in this survey, and to our partner, the University of Pittsburgh.
An abstract was published on the American Society of Hematology (ASH) website. Click the button below to view more information on the publication on the Barriers to the Use of Disease-Modifying Treatments in Sickle Cell Disease: A Survey of Patients and Caregivers.