Support and information needs identified in a survey of adults with sickle cell disease

Abstract

Newborn screening and early treatment for sickle cell disease has dramatically improved outcomes for impacted children, but adults with the disease live with chronic and acute pain, organ damage, a high risk of mortality, and diminished quality of life. Adults’ access to quality care and knowledgeable providers is limited compared to other genetic diseases. Adults living with the disease and associated with two community-based organizations were asked to complete a survey describing their health education and information needs with regard to sickle cell, as well as their challenges finding supportive and knowledgeable care. Nearly 600 responses were received. Respondents describe their information needs, such as the best care providers nearby, insurance options, connections to support groups. Questions also address the utility of different types of support services, as ranked by respondents. Respondents also described actions they take when experiencing a vaso-occlusive/pain crisis and answered an open-ended question about their greatest needs to improve quality of life. Findings suggest that support groups along with knowledgeable and compassionate care are important identified needs to those living with sickle cell disease. Respondents noted reliance on friends and family as well as social media for information about their disease. They reported that the emergency room was the primary source of medical care sought when an acute pain crisis happens. These survey results highlight the many unmet needs for adults living with sickle cell disease.