Mother and Son


Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model

Recent research from the Mid-South Clinical Data Research Network found that modifying components in the Health Belief Model—a widely used, theoretical model for explaining and predicting healthy behaviors—may increase the number of sickle cell disease patients who attend recommended clinical appointments. NICHQ will disseminate these findings to a network of sickle cell disease stakeholders, many affiliated with the HRSA-funded Sickle Cell Disease Treatment Demonstration Regional Collaborative Program, as well as through advocacy networks, professional organizations, and patient and family networks.

Ready to get involved?


Status: Complete

July 2019 - December 2021

  • Who: NICHQ is partnering with Suzette Oyeku, MD, MPH, the Division Chief of Academic General Pediatrics at The Children’s Hospital at Montefiore/Albert Einstein College of Medicine; and TaLana Hughes, a mother of an adolescent living with sickle cell disease and an experienced patient advocate.
  • Funder: The project is funded through the Patient-Centered Outcomes Research Institute (PCORI), the organization that also funded the Mid-South Clinical Data Research Network study.
  • Our Role: NICHQ will develop and implement a comprehensive dissemination strategy to share the results from the study with key stakeholders. Outreach will include creating and disseminating an easy-to-read executive summary of findings; creating a short video of stakeholders sharing their experiences; designing and delivering five webinars, tailored based on key informant interviews; and presenting at relevant conferences.

Hear from Patients and Providers

Patients, families, and providers participated in this video where they share why it's difficult to make appointments, and describe how missing them impacts health and well-being.

Their stories illustrate an urgent need for change. View the webinar recording discussing strategies on improving appointment attendance. 

child raising hand

Participate in the Project

Sign up to join our network of sickle cell disease stakeholders. Your voice and your story will play a key role in driving change. During a series of web-facilitated discussions, we will take a deep dive into the study’s findings and explore how health professionals, community partners, families and all sickle cell disease stakeholders can help increase appointment attendance. 

This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-14446)