Sickle Cell Disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent. This inherited blood disorder may cause acute pain episodes, infection, and other serious health problems that can damage every organ in the body.

Too often, people living with SCD and their families and caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months. In disseminating the study results, NICHQ interviewed patients, caregivers, and providers – and found that systemic and individual bias and racism contributed to poor patient/provider relationships, which in turn undermined solutions to appointment attendance problems. 

While the relationship between patients or caregivers and their providers is not the main problem, improving that partnership is a big part of the solution. 

Please submit the form below to access the following resources:

• Increasing Sickle Cell Disease Appointment Attendance: A Conversation & Facilitation Guide
• Increasing Sickle Cell Appointment Attendance: A Conversation Guide
• Infographic for Patients and Caregivers