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?
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.
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)
3 Ways to Close Gaps in Sickle Cell Disease Care: Recommendations from NICHQ Projects
In the past several decades, clinicians, public health professionals, and those with lived experience have seen advancements in Sickle Cell Disease (SCD) treatments and research that have significantly improved outcomes and increased life expectancies for people living with SCD. For example, the FDA-approved medication hydroxyurea (HU) has been recommended as a SCD standard of care due to its ability to help people with SCD mitigate pain and the need for blood transfusions. Preventative measures, such as screening children and adolescents for risk of stroke and ensuring that all people who have SCD receive recommended vaccinations, have also been instrumental in reducing complications associated with SCD. And recently, development of gene therapies has presented possibilities of a new cure. Conversations on how to improve access to care should continue, and these three recommendations begin with some of the most pressing needs.
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