Appendix I: Executive Summary

Executive Summary of Health Equity Considerations for Updates, Modifications, and Recommendations to the NHF VWD Toolkit and Promotion Plan

The National Hemophilia Foundation (NHF) is committed to serving individuals with bleeding disorders and their families. Von Willebrand disease (VWD) is the most common bleeding disorder and affects up to 1% of the general population (CDC, 2020). Unfortunately, even though VWD is the most common, awareness among health care professionals is low (Sidonio, Zia, & Fallaiz, 2020). It is estimated that 35,000-387,000 patients may have symptomatic, undiagnosed VWD in the United States (Sidonio, Zia, & Fallaiz, 2020). Increased awareness and education of VWD, its symptoms, and recommended treatment would improve the quality of life of individuals living with VWD.

Understanding which different health inequities and barriers affect the VWD community, and how these factors can be addressed to improve health outcomes is important to increasing awareness and improving education surrounding VWD. Several social determinants of health affect the diagnosis and management of VWD. Unconscious bias based on irrelevant characteristics, such as race or gender, can lead to poor evaluation of a patient, further leading to delayed diagnosis and proper treatment (FitzGerald and Hurst, 2017). Communities of color, women, individuals with less economic stability or low socio-economic status, rural communities, and persons with lower educational attainment are more negatively affected by the burden of VWD. This research informed recommendations and modifications for the VWD toolkit and promotional plan.

Recommendations included to address the determinant of race/ethnicity, the toolkit must have representation of people of color and show the diversity of the VWD community. Because women often experience diagnostic delay and worse health outcomes related to VWD, it is important to have resources specifically targeted towards women and girls. The resources should target a wide age range, covering topics from puberty to childbirth. Persons with low-income levels and who lack economic stability are at a disadvantage when trying to care for their disease. Therefore, the toolkit will be available for free download or will be printed and distributed for free through the chapters and HTC network. Electronic availability of the toolkits also supports individuals living in rural communities. For persons with lower educational attainment, the material content was reviewed and considered to be at an 8^th grade level. Having the toolkit available for download or distributed through the chapter/HTC network will ensure equitable distribution for all persons regardless of income level or location.

The promotion plan begins at BDC in August 2022 and will last for one year. It will target newly diagnosed individuals, chapters, and HTCs. Different social media campaigns, email campaigns, and newsletters will promote the toolkit. Information sessions will be provided to chapter staff and HTCs at different events throughout the year to promote the toolkit and to describe the available resources. Copies of the toolkit will always be available through electronic file or through physical copy provided by NHF. It is important to understand which determinants of health affect the bleeding disorders community and to increase education and awareness regarding VWD so that individuals are empowered to advocate for themselves.

References

CDC. (2020). Data and statistics on von Willebrand disease. Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/ncbddd/vwd/data.html

FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: a systematic review. BMC medical ethics, 18(1), 19. https://doi.org/10.1186/s12910-017-0179-8

Sidonio, R. F., Jr, Zia, A., & Fallaize, D. (2020). Potential Undiagnosed VWD Or Other Mucocutaneous Bleeding Disorder Cases Estimated From Private Medical Insurance Claims. Journal of blood medicine, 11, 1–11. https://doi.org/10.2147/JBM.S224683