The goal of this survey is to examine what it means to be an individual with sickle cell disease that is “unaffiliated” or “disconnected” from sickle cell disease care. The survey seeks to answer the following questions:
1. What barriers do individuals with sickle cell disease face when trying to access care?
2. What keeps individuals with sickle cell disease from trying to access care?
3. What are effective methods to bring unaffiliated individuals with sickle cell disease into care?
The data collected from the survey will provide useful information for the design of interventions to bring more people with sickle cell disease to evidence-based care.
Survey Participants? 18 & Over
Survey participants must be over the age of 18. We would like to especially reach adults with sickle cell disease who are currently or has been in the past unaffiliated from care. This means they do not currently receive care from a sickle cell disease specialist or did not receive care from a sickle cell disease specialist for more than a year at any point in their lives.
Note that we are looking for adults with sickle cell disease that meet the above criteria in the United States.