Improving Sickle Cell Disease Patient/Provider Relationships and Increasing Appointment Attendance

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. Below are some important tools and resources that can be used to help facilitate conversations and guide your efforts in improving relationships between providers and people living with SCD. Each guide is written for a different target audience.