Project Summary

Background: While investments are being made to improve the care of individuals with sickle cell disease (SCD), missed appointments can hinder optimal success. Research results from the PCORI-funded Mid-South Clinical Data Research Network indicate that among individuals with SCD, “a majority of adults (87 percent) and caregivers of children (65 percent) reported they missed a clinic appointment” (Cronin, 2018). The factors associated with missed appointments in adults include financial insecurity, health literacy, age, spiritualty, and, above all, forgetfulness.

Proposed Solution to the Problem: The initiative “Disseminating Results: Missed SCD Clinic Appointments and the Health Belief Model,” is designed to introduce these research results to stakeholders across the country, so that more patients and providers can understand the behaviors that could be modified to increase clinic appointment attendance.

Objectives: The project aim is to disseminate the finding that modifying specific components of the Health Belief Model can improve SCD patients’ attendance of appointments. In the short term, this involves spreading insights to providers, patients’ medical homes, and other stakeholders associated with the Health Resources and Services Administration-funded Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) and the broader SCD community. The long-term objective of the project is to ensure appropriate delivery of care by modifying both patient and provider behaviors that will facilitate more patients attending their healthcare appointments.


  • Create and disseminate an easy-to-read executive summary of findings
  • Create a short video of stakeholders sharing their experiences
  • Design and deliver five webinars, tailored based on key informant interviews
  • Present at three relevant conferences
  • Design, implement, and evaluate surveys to assess effectiveness of dissemination efforts and stakeholders’ willingness to initiate change in practice


  • Increase in patients and providers that are exposed to study findings
  • Increase in provider understanding of behaviors that can be modified to increase appointment keeping
  • Increase in provider ability to develop strategies to address barriers to appointment keeping
  • Increase in patient and family understanding of services for which they need to advocate to increase appointment keeping

The following tangible outputs will be created: easy-to-understand executive summary, short video, five recorded webinars, participant survey evaluation.

Patient and Stakeholder Engagement Plan: Key stakeholders for this project are individuals with SCD and their caregivers, SCD healthcare providers such as physicians and nurses, and ancillary staff (e.g., community health workers, case managers, care coordinators, scheduling and support staff). NICHQ will leverage its role as the National Coordinating Center for the SCDTDRCP to involve the existing Regional Coordinating Centers in the engagement of patients and providers. Patient, caregiver, provider, and advocate representatives will be invited to participate in key stakeholder interviews to help inform webinar design and will be invited to participate in the creation of a video. All stakeholder groups will be engaged as webinar participants. Select stakeholders will be contacted to gauge uptake of the disseminated material.

Project Information

Scott D. Berns, MD, MPH, FAAP
National Institute for Children’s Health Quality (NICHQ)

Key Dates

30 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 10, 2022