African American Women & Sarcoidosis
What We Know
African American women have more severe and chronic forms of sarcoidosis, worse disease-related morbidity, and a higher mortality rate . . . and it’s NOT all genetics. There are systemic factors within our healthcare system that contribute to worse outcomes and care that we must acknowledge and address.
Ignore No More is a call to action for patients and providers.
It is a message to patients calling them to listen to their bodies and be proactive in seeking care when changes or symptoms occur. It is also a call for health care providers to listen to African American women, acknowledge the massive health disparities that impact their care, and take active steps to address the interpersonal and systemic barriers that fuel mistrust and lead to poorer outcomes.
Be informed so you can provide quality care.
Stay up to date on emerging research on disparities in care and treatment among sarcoidosis patients. A recent qualitative study published in 2021, explains how poor patient-provider communication, provider knowledge gaps and mistrust in providers and the healthcare system all serve as barriers to quality care for black women.
Visit the campaign homepage for more sources on health disparities in sarcoidosis. Review the Sarcoidosis Treatment Guide for information on recommended treatment options and therapies for numerous manifestations of sarcoidosis.
Be an advocate for your patients.
Help improve the quality of provider/patient communication by partnering with your patients. Ask about their lives and any challenges they may have understanding and following your treatment plan. Successful treatment plans take into consideration the patient’s lifestyle, responsibilities and working conditions. Providers who possess and practice emotional regulation, perspective-taking and partnership-building with their patients are more likely to develop provider/patient relationships that positively impact patient satisfaction, team-oriented behavior, and better health outcomes.
Understand Social Determinants of Health
“If she really cares about her health, she will show up for appointments.” - provider
Adhering to treatment plans is not always about will. Many patients experience barriers to care as a result of environmental factors or social determinants. Consider what it takes for a patient, particularly one with a lower socioeconomic status, to attend multiple doctor’s appointments. Here are just a couple factors to consider:
Securing Transportation: Cost of gas and/or public transportation, travel time to and from appointments interfering with other inflexible responsibilities, relying on others to provide rides, etc.
Taking time off work: Appointments frequently run behind or over the projected time frames leading to potential conflicts with other responsibilities (childcare, work, etc.). Frequent requests off work can be denied and/or unpaid leading to other financial challenges, and job insecurity.
Other direct expenses: When living on a tight budget, unexpected expenses can throw off the entire month. They may opt to skip co-pay fees for appointments to ensure more immediate responsibilities like rent and/or utilities are paid, or their children/family can eat.
Consider Adjusting Your Health Care Delivery Model
Though many of the examples listed above disproportionately impact those of a lower socioeconomic status, patients of various backgrounds and higher incomes, also experience barriers leading to missed or cancelled appointments, especially women, who bear the brunt of household, childcare and caregiver responsibilities. To meet the needs of the patient, particularly as we continue to navigate a pandemic which has compounded these barriers for many, it is important to look for ways we can adjust our health care delivery model to increase access for all patients. The pandemic ushered in a wave of changes to the delivery model including the incorporation of more technology-based services like telehealth appointments. Building on these creative innovations, institutions can re-imagine health care delivery and look to other adjustments that can be made to reduce barriers to care. Even small changes like offering evening appointments on certain days can open a pathway for many patients to receive the care they need.
Acknowledge and address your biases.
Biases don’t have to be explicit to have harmful and long-lasting effects. Implicit bias is when we have attitudes towards people or associate stereotypes with them without our conscious knowledge. This means biases can be hidden within the most well-intentioned people; and when these people are authoritative figures these attitudes can unconsciously guide decision-making which have very real consequences.
When the authoritative figure is a health care provider, these consequences can translate into poor communication, mistrust of the healthcare system, ineffective treatment plans, dismissal of symptoms and pain, late/misdiagnosis and much more. There is extensive evidence and research that finds unconscious biases can lead to differential treatment of patients by race, gender, weight, age, language, income, and insurance status.
Assessing your biases and acknowledging their existence is a good first step to addressing them. Everyone has biases, so it’s important to be self-aware and take a personal inventory to ensure you are identifying and addressing your biases to better serve your patients.
Assess & acknowledge your bias:
Read this article by The Joint Commission, “Quick Safety 23: Implicit bias in health care” to learn more about provider implicit bias, how it impacts patient care and how providers and health care institutions can work together to combat these biases and improve patient care. This webpage also provides numerous empirical studies and sources you can reference for more information and support.
Project Implicit at Harvard University has an implicit association assessment (IAT) to measure implicit bias. Between October 1998 and October 2006, more than 4.5 million IAT tests were completed on the IAT website. The project found that:
Implicit bias is pervasive
People are often unaware of their implicit biases
Implicit biases predict behavior
People differ in levels of implicit bias
Learn about Project Implicit here and take the IAT assessment to identify and learn about any biases you may be fostering.
Address your bias:
Actions that health care providers can take to combat implicit bias, include: Having a basic understanding of the cultures from which your patients come.
Avoiding stereotyping your patients; individuate them.
Understanding and respecting the magnitude of unconscious bias.
Recognizing situations that magnify stereotyping and bias.
Knowing the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (the National CLAS Standards).
Performing “teach back (e.g., the National Patient Safety Foundation’s “Ask Me®” educational program).
Assiduously practicing “evidenced-based medicine.”
Using techniques to de-bias patient care, which include training, intergroup contact, perspective-taking, emotional expression, and counter-stereotypical exemplars.
Educate your patients about clinical trials and explain the benefits of participation.
Despite having the highest prevalence of sarcoidosis and higher hospitalization and mortality rates compared to their Caucasian male and female and African American male counterparts, African American women are exceedingly underrepresented in clinical trials/research.
It is only through science and research, that we can gain a better understanding of the impact of sarcoidosis in the African American community, a community living with the highest prevalence of this chronic disease. As we learn more about its impact on African American women, we also gain a better understanding of sarcoidosis in all communities. Increasing representation in clinical trials, provides an opportunity to explore the challenges disproportionately impacting African Americans, while learning more about the disease and improving processes that will improve the care and treatment of all living with sarcoidosis.
Start the conversation.
Developing trust with your patients is a necessary component of having this discussion. Due to historical experimentation and ongoing biases within the health care system, there’s a general mistrust of clinical trials within the African American community. Serving as a trusted source of information for your patient can go a long way in having this important discussion. Take the time to speak with your patients about any concerns, barriers, or misconceptions they may have about participating in clinical trials and explain the benefits and impact research outcomes can have on improving care and treatment for all. Through these discussions we have an opportunity to address concerns and provide accurate information.
Learn about qualifying clinical trials your patients may be eligible for and connect them directly to resources they can access to learn more.
FSR has a directory of ongoing clinical trials on sarcoidosis, as well as a patient registry, patients can join to receive clinical trial updates. Providers can share the importance of participating in clinical trials and refer patients for more information:
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- Hena, K. M. (2020). Sarcoidosis Epidemiology: Race Matters. Frontiers in immunology, 11.
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- Luisetti, M., Beretta, A., & Casali, L. (2000). Genetic aspects in sarcoidosis. European Respiratory Journal, 16(4), 768-780.
- Gideon NM, Mannino DM. Sarcoidosis mortality in the United States, 1979–1991. Am J Med 1996; 100: 423–427. 3. Reich JM
- Gideon, N. M., & Mannino, D. M. (1996). Sarcoidosis mortality in the United States, 1979–1991: an analysis of multiple-cause mortality data. The American journal of medicine, 100(4), 423-427.
- Foreman, M. G., Mannino, D. M., Kamugisha, L., & Westney, G. E. (2006). Hospitalization for patients with sarcoidosis: 1979-2000. Sarcoidosis, vasculitis, and diffuse lung diseases: official journal of WASOG, 23(2), 124-129.
- Moor, C. C., Van Manen, M. J. G., van Hagen, P. M., Miedema, J. R., van den Toorn, L. M., Gür-Demirel, Y., ... & Wijsenbeek, M. S. (2018). Needs, perceptions and education in sarcoidosis: a live interactive survey of patients and partners. Lung, 196(5), 569-575.