While it is generally understood that the social determinants of health (SDOH) are significant factors contributing to an individual’s overall health, research specific to SDOH and its impact upon the bleeding disorders community has been rather limited. Authors of a newly published paper sought to address this knowledge gap by conducting a pilot study on SDOH in bleeding disorders, and gain insight on how these factors pose challenges among underserved groups in the U.S.
Their findings, “Addressing Health Equity, Diversity, and Inclusion in the Bleeding Disorders Community: Insights from a Pilot Study of Multi-Stakeholder Interviews and Survey Data,” were published recently in the journal Haemophilia. This pilot study was a collaborative project between the National Bleeding Disorders Foundation (NBDF) and Impact Education, LLC. It was supported by an educational grant from Takeda Pharmaceuticals U.S.A., Inc.
The study authors looked for potential trends in health equity, diversity, and inclusion among Black/African Americans, indigenous people of color (e.g. Native Americans and Asian Pacific Islanders), and Hispanic/Latino people with bleeding disorders.
The study included two primary components: a series of phone interviews and a follow-up survey. Between February and June of 2023, individual one-hour phone interviews were conducted with a total of eight hemophilia treatment center (HTC) staff members from different regions, including hematologists, HTC directors, a physical therapist, and a nurse practitioner. One NBDF chapter executive also took part. The in-depth interviews focused on the impact of bleeding disorders in underserved patient populations, with particular emphasis on the effect of SDOH on patient outcomes and suggestions for interventions.
The insights shared in the interviews helped inform the second part of the study – A qualitative and anonymous survey (conducted in February 2024) on the impact of the COVID-19 pandemic on bleeding disorder patients. Questions were included to gauge whether certain subgroups were more or less affected by the pandemic (based upon additional SDOH variables). While most of the questions were multiple choice, the electronic survey also provided opportunities for respondents to elaborate on their answers. A total of 33 HTC healthcare providers (HCPs), representing a variety of disciplines, completed the qualitative survey.
Among the results, HCP respondents cited that the pandemic had a significant impact on members of the bleeding disorders community, particularly for those individuals who were already experiencing socioeconomic instability before COVID-19 took hold. More than 75% of the respondents answered that COVID-19 either ‘somewhat’ or ‘substantially’ impacted community members socioeconomically. HCPs also noted that older adults, those in rural areas, women, Black, Hispanic, and adolescent groups were significantly affected.
Another key finding from the survey was that financial hardships experienced during the pandemic exacerbated living conditions for lower income groups, non-English speakers, and those working in service and hospitality industries. Job insecurity (noted by a few HCPs), was a significant contributor to housing instability, an unstable home life, and poor bleeding disorder management.
Poor cultural awareness was also cited by respondents as a barrier to optimal care at HTCs. HTC leaders identified that “a potential lack of cultural competence amongst HCPs working at HTCs could lead to misunderstandings or misinterpretations of the unique needs, beliefs, and practices within minority communities.” To address these issues, the interviewees recommended “focusing more efforts on improving diversity in the HTC provider community, improving the cultural context (skills) of HCPs, and implementing strategies to reduce implicit biases.”
Another important takeaway from the survey was how transportation was cited as a key access barrier affecting patients with bleeding disorders, especially for those living in rural areas, or in low-income families, among both the under insured and uninsured, and for some living in urban communities affected by gentrification.
In summary, the authors described the hard lessons of the pandemic and what their findings can teach us about more vulnerable populations within the bleeding disorders community. “The impact of socioeconomic factors, exacerbated by the COVID-19 pandemic, underscores the need for tailored interventions to improve access to care and support services,” explained the authors.
While this was a pilot study, having certain limitations in terms of its scope, the authors believe there to be a clear opportunity for follow-up study to collect data on SDOH and bleeding disorders going forward.
NBDF and Impact Education LLC are grateful to Takeda Pharmaceuticals USA for their support of this project.
Citation
Frick N, Norris KL, Pangrace M, Richardson T, Waite-Ardini S. Addressing Health Equity, Diversity, and Inclusion in the Bleeding Disorders Community: Insights from a Pilot Study of Multi-Stakeholder Interviews and Survey Data. Haemophilia. 2025 Aug 25. doi: 10.1111/hae.70118. Epub ahead of print. PMID: 40853672.
NBDF, through its Neil Frick Resource Center, provides periodic synopses of articles published in peer-reviewed journals, the purpose of which is to highlight papers that cover a wide range of topics and relate to a broad spectrum of the inherited blood disorders community. Prior summaries have focused on topics such as shared decision-making, gene therapy, health equity, and more. NBDF hopes you find this content to be informative and engaging.
Disclaimer: Any questions about the articles featured here should be directed to the specific publisher, journal and/or authors. This content is being shared for general information only. NBDF does not give medical advice nor engage in the practice of medicine. NBDF under no circumstances recommends a particular treatment for specific individuals and in all cases recommends that you consult your physician or HTC before pursuing any course of treatment.
