Report Looks at Factors that May Contribute to Cultural and Ethnic Differences in People Living with PAH

by Phyllis Hanlon, Contributing Writer

The 2010 United States Census reported that about 36 percent of the population identifies as part of a racial or ethnic minority group. Studies have suggested that when minorities face health-related challenges – including WHO Group 1 PH (PAH, pulmonary arterial hypertension) – they often fare worse than the rest of the population. A group of 15 experts who specialize in PAH clinical care and public health research looked at the current information on such health disparities (i.e., differences linked to racial, hereditary, social, economic and/or environmental factors) related specifically to PAH, and provide recommendations for future research. They published their findings in the American Journal of Respiratory and Critical Care Medicine in October. (

The committee identified six topics in PAH and health disparities to review:

  • national registries,
  • genetics,
  • environmental stressors,
  • socioeconomic status,
  • medical education and
  • partnerships between organizations to develop PAH policies.

The committee divided into teams and completed literature reviews on each topic. They reviewed several registries, including REVEAL (Registry to Evaluate Early and Long-term Pulmonary Arterial Hypertension Disease Management) (, PAH-QuERI (Pulmonary Arterial Hypertension-Quality Enhancement Research Initiative) ( and MESA (Multi-Ethnic Study of Atherosclerosis) (, as well as an online research database (Medline).

Although there were not many studies focused on minorities, the committee did find some useful information. First, they found a genetic association with acute respiratory distress syndrome, asthma and chronic obstructive pulmonary disease (COPD) in African-Americans and some Latinos. Though genetic mutations in some genes—such as BMPR2—have been correlated with increased risk for developing PAH, the exact relationship between genetics and PAH is still not fully understood. The committee suggested that future studies take “…a global approach involving multiple investigators and multiple highly diverse patient cohorts,” and that, with a better understanding, genetic screening might someday be useful in diagnosing and determining treatment.

Additionally, after looking at the first study in the U.S. on the role of socioeconomic factors and its relationship to PAH (, the committee found that poor socioeconomic status (SES) — a combination of factors, including education, occupation, marital status, insurance and income — contributes to a delay in diagnosis and treatment. Low SES is thought to be associated with worse functioning class because, by the time the patient is referred to a specialized center, the disease has progressed. The committee pointed out that much of SES-related information is collected in the era of electronic medical records but is not often factored into management decisions.

According to the committee, another important factor that should be captured is the physical and social environment in which PAH patients live. Specifically, air pollution, dietary habits, toxins and drug-taking behavior should be looked at more closely to understand if and how they might contribute to the development and progression of PAH.

The health care system itself may also present a challenge for racial and ethnic minorities, the committee noted. The committee’s literature review found that minority patients “tend to receive a lower quality of healthcare than white patients,” due to a variety of factors, including physician bias. Based on cited research, they reported that “unconscious” bias is common among physicians and could impact accurate diagnosis of PAH. In addition, if the patient does not speak English, it could be more difficult for the physician to obtain all necessary medical information. Also, the committee found access barriers to important diagnostic tests that could confirm a diagnosis when patients have no or limited insurance coverage.

The committee recommends an educational approach for health care providers with an emphasis on the importance of early diagnosis and referral to a specialty center. Physicians should also be aware of the way in which the environment, comorbid conditions — such as chronic lung disease, sleep apnea and others — and substance abuse might contribute to the development of PH, according to the committee. A strategy that includes formal training, cross-cultural courses as part of medical education programs and partnerships with agencies and organizations on outreach programs should be seriously considered, the committee added. The addition of more ethnically diverse practitioners could also help to foster better patient-physician relationships and understanding.

The committee pointed out that the NIH Roadmap for Medical Research ( recommended the integration of “…clinical, basic, and social science research to identify and treat factors directly related to disparities in health outcomes.” If these valuable resources were better organized, they could capture appropriate information regarding racial and ethnic minorities, the committee noted.

Finally, the committee asserted that a combination of federal, community and professional resources would be beneficial in developing research projects, appropriate interventions, educational material and health policies that could help minorities with PAH. The committee wrote, “…this research statement is expected to serve as a platform for discussions regarding the impact of health disparities in any population and should guide researchers to look into their country’s health system for barriers to healthcare.”

Each PH patient is different. It is essential that you talk to your own doctor about what treatment options are best for you. For more information on finding a doctor or an accredited care center, visit

2017-10-27T15:06:57+00:00 October 27th, 2017|