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.

Guide for Community-Based Organizations

This guide is written for CBOs and other family and patient advocacy organizations to use in group or individual settings.

Guide for Providers to Use with Patients

This guide is written for providers to use in one-on-one settings during routine appointments or in small group settings on SCD "clinic days." 

Caregiver Infographic

If you're like others living with SCD or caring for someone who does, you might have missed an appointment in the last year. These graphics suggest some steps to find solutions and help make getting to appointments easier.