The COVID-19 pandemic and coinciding events of 2020 involving political and social instability have put additional strain on the United States (US) population, highlighting and widening health disparities experienced by minoritized and marginalized patients.1 The disproportionate effects of COVID-19 on vulnerable populations may represent deeper systemic challenges of interrelated known and unknown variables contributing to health inequities. To date, the research addressing health disparities in pulmonary arterial hypertension (PAH) has been limited.2,3 In this article, we will explore potential contributing factors to health disparities in PAH. We hope to shed some light on areas of influence or intervention that may need further investigation to improve quality of care and outcomes in PAH.
Pulmonary hypertension (PH) is characterized by increased pulmonary arterial pressures.4 The World Health Organization (WHO) categorizes etiologies of PH into 5 groups. WHO Groups 2–5 PH are common and serious.4–6 WHO Group 1 PAH remains classified as an orphan disease associated with many underlying causes5,6 and has an estimated 2.8-year median survival if left untreated.7,8 Since 1980, hospitalization and death rates from PAH have increased because of increased diagnosis and improved reporting patterns, but the total number of cases remains underestimated due to difficulties in disease detection.9–11 PAH remains underrecognized, with many patients being diagnosed more than 2 years after symptom onset, thereby contributing to worse outcomes and missed opportunities to intervene before the occurrence of irreversible life-threatening disease progression.2,12,13 With advances in PAH therapies, treatment is becoming more complex, requiring a more individualized approach.6 By disproportionately impacting vulnerable patients, the delay to diagnosis and the barriers to introducing therapies have the potential to worsen health disparities in PAH, especially when compounded by the challenges facing patients and families during the COVID-19 pandemic.
Discrepancies in health outcomes in people with PAH based on race, ethnicity, gender, age, and socioeconomic status (SES) have been demonstrated.11,14–20 Researchers have shown that women have better survival than men with PAH, possibly due to different etiologies, hormonal differences, and other unknown reasons.14,21,22 However, because the risk and prevalence of PAH is higher in women, the overall death rate secondary to PAH remains higher in women.2 The data regarding the impact of race have been conflicting. Authors of some studies have shown that African American or Asian patients with PAH have an increased risk of death.16,18 However, analysis of the REVEAL Registry found no significant association between race or ethnicity and survival in PAH after correcting for variables of prognostic impact.23 A review of vital statistics data from 1994–1998 revealed that African Americans with PAH exhibited substantially higher mortality rates compared to White populations, and African-American women had the highest mortality rates across all ages.15 Underlying causes for these differences are unknown but could be related to social determinants of health (SDHs) and health inequities.3
HEALTH DISPARITIES AND DETERMINANTS OF HEALTH
“a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. . . [that] adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; SES; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.”26,27
SDHs and how they intersect as well as other determinants of health are important to consider, as they influence health outcomes and, when overlooked, could negatively impact the health of some populations more than others.28 The difficulty in categorizing these factors and the likelihood of disagreement with a preconceived classification demonstrate how complicated these factors and their interrelationships are (Figure 1). Many studies suggest links between inequities in psychosocial, economic, environmental, lifestyle, behavioral, experiential, technological, and biological factors and health that may contribute to health disparities.2,3,26–31 We have designated the information into the following groupings for organizational purposes, but a great deal of overlap exists between the topics of each paragraph.
Racism and Discrimination
The COVID-19 pandemic is exacerbating stress, which makes it more difficult for marginalized groups to cope with discrimination, who in turn engage more in health-harming behaviors and less in health-promoting behaviors, which further increases the risk of poorer health outcomes. A rich source of social science literature conceptualizes racism, but integration of this research into medical and scientific literature geared toward health professionals is lacking, especially as it pertains to PAH.32 Structural racism refers to the totality of ways in which societies foster racial discrimination, through mutually reinforcing inequitable systems (in housing, education, employment, earnings, benefits, credit, media, health care, criminal justice, and so on) that in turn reinforce discriminatory beliefs, values, and distribution of resources, which together affect the risk of adverse health outcomes.32 Racism and discrimination of minority and marginalized groups contributes to poorer mental and physical health outcomes, and these subsequent health disparities are increasingly relevant to the care of patients with PAH. Perceived racial and ethnic discrimination leads to negative stress. Emotional responses are known to be associated with long-term health consequences in cardiovascular disease and hypertension and are worth exploring in PAH.2,31,33–41 Cardiovascular and psychological stress responses occur from the mere anticipation of prejudice.42 Prior literature indicates a dose-response relationship between poor health and racial discrimination.41 Everyday discrimination is harmful to the physical and mental health of racial and ethnic minorities as well as Whites, indicating that the connection between health and perceived discrimination goes beyond racial discrimination.38,43 Some potential pathways for negative health outcomes due to discrimination include economic and social deprivation, lack of access to adequate medical care, inequitable exposures to hazards, targeted marketing of substances that can harm health, barriers to engaging in healthy behaviors, and maladaptive coping mechanisms such as substance use.2,29,31,32,35,44–47 Many of these socioeconomic factors shaped by discrimination already contribute to an increased risk for PAH and also put some groups at greater risk for COVID-19,48 demonstrating an intersectionality between these two disease states.
African Americans are also at increased risk for other conditions that are known to be risk factors for PAH, such as sickle cell disease, systemic sclerosis, human immunodeficiency virus (HIV), and liver disease.49 The health inequity becomes even more exaggerated because of the disproportionately higher amounts of health-harming products targeted at African-American and minority communities. Such products include alcohol, carbonated and sugar-sweetened beverages, high-fat foods, candy, other high-sugar desserts, and tobacco, including more harmful tobacco products such as mentholated cigarettes.31 Targeted marketing toward minority communities of illegal substances like illicit opioids and heroin also occurs.32 Methamphetamine use has increased since the start of the pandemic, and since liver disease and illegal drug use (methamphetamine, cocaine) are risk factors for PAH, these discriminatory elements are important to consider in PAH and may prove to be a barrier to cessation of substances of abuse.4
Much of the available research on discrimination addresses the impact on racial and ethnic minorities. However, many other forms of discrimination exist that impact older adults, women, people with disabilities, gay, lesbian, bisexual, transgender individuals, prisoners, and many others.50 Very little research has been done with regard to the effects or prevalence of discrimination in PAH. Transgender individuals have an increased likelihood of being victims of discrimination and hate crimes and are often socially marginalized, thereby increasing their risk for unemployment, homelessness, and illegal activities such as sex work.38,51 Transgender people, sex workers, and prisoners encounter more daily and severe discrimination and are at a greater likelihood of participating in health-harming behaviors like smoking, drug and alcohol abuse, in addition to attempted suicide, which increases their risk for poor health.38,51 Also, a higher prevalence of HIV infection, mental health issues, suicidal ideation, substance abuse, and exposure to violence exists among these groups.38 Because HIV and intravenous drug use are risk factors for PAH and have a worse prognosis than other forms of PAH, further research into the effect discrimination is having on PAH prevalence, time to diagnosis, prognosis, mortality, and other health outcomes in marginalized populations is warranted.4
Black Americans have been found to be exposed to more cumulative stress, which is in turn associated with greater social isolation.52 People who are more socially isolated and have fewer social interactions with others are more likely to die prematurely and have worse mental and physical health.41,52 Social isolation has been found to decrease the benefits of social support and impact overall physical health and systemic inflammation.52 Social support and effective coping skills may help moderate the effects that racial discrimination has on health, which suggests a point of intervention relevant to the management of PAH, which can be targeted by health providers that support the importance of multidisciplinary care and community.34,47
Microaggressions are the everyday allegations, slights, and insults that people of color experience regularly in their interactions.53,54 The stress surrounding experiencing microaggressions and discomfort in how to respond have been shown to result in elevated blood pressure. Microaggressions are experienced disproportionately by Black Americans and can result in self-esteem issues and depression.53,54 It is therefore likely that subtle everyday instances of microaggressions also contribute to poorer health outcomes, including in PAH, especially when an increase in microaggressions to minorities has been observed during the COVID-19 pandemic.55
Environmental and Geospatial Determinants
Neighborhoods in the US continue to be racially and economically segregated. This form of structured racism contributes to health inequities through environmental exposures, crime, health care, public benefits and resources, housing, education, employment opportunities, and other determinants of health factors.32,40,56 Adverse birth outcomes, decreased longevity, exposure to air pollution, increased risk of chronic disease, poverty, job loss, interpersonal trauma, exposure to violence, and increased rates of crime such as homicide affect health outcomes and are associated with residential segregation and structural racism.32,52 Community violence, which includes violence as direct injury, injury of friends or family, witnessing violence, hearing gunshots, and learning about violence through neighbors or media, is rarely enquired about in the care of PAH patients. The physiologic stress response to community violence increases systemic inflammation, and behavioral changes in response to fear of harm can result in decreased physical activity, unhealthy diets, psychoactive substance use, increased isolation, and other actions that influence health as an attempt to cope or stay safe.45 Police killings of unarmed Black Americans affect the mental health of people not directly involved or connected to the killings.57 Thus, exposure to community violence likely exacerbates the stress, isolation, and disparate vulnerabilities caused by COVID-19, in particular in populations who already have a chronic disease, such as PAH.
Inequities in access to safe and adequate local public resources and facilities, including green space, bike lanes, walkable sidewalks, healthful foods, transportation, and recreational areas, influence health behaviors and maintenance.52,58,59 These are determinants of health contributing to health disparities and may be important factors to consider when recommending healthy lifestyle behavior changes to patients with PAH. Overcoming environmental and socioeconomic barriers requires creative solutions and shared decision making to identify realistic personalized interventions that increase the likelihood of patients’ ability to adhere to medical recommendations.
Exposure to certain toxins and drugs, pollution and other environmental stressors, and living conditions may play an important role in PAH development, pathogenesis, and prognosis.3,60 Minorities are disproportionately exposed to occupational hazards, and toxic waste sites and bus garages are placed in or near neighborhoods where marginalized, racialized groups predominantly reside.32 Poorer neighborhoods and African Americans may be located closer to higher traffic density roadways or sources of industrial pollution.61,62
Analysis from the REVEAL Registry using ZIP code-based median income showed a higher frequency of Black and Hispanic races in the <$60,000 income categories and the most subjects with functional class 3 and 4 PAH at baseline in the $40,000 income group. Also, a longer time to disease recognition was found in the lower income groups, but a longer time to disease was not associated with geographic region.3,12 SES is a strong predictor of health and can directly influence housing and neighborhood options as well as geographical location. Previous research in PAH has shown an association between worse outcomes and lower SES, so further investigation of geospatial determinants of health in PAH are worth consideration.23,41
SDHs and SES have been identified as fundamental causes behind health disparities and racial differences in health.32,58,63 These terms often incorporate factors that can alter health-related behaviors such as neighborhoods, income, education, wealth, occupation, health insurance coverage, and marital status.3,58 Social cohesion refers to the strength of relationships and the sense of solidarity among members of a community and involves shared group resources like a friend-of-a-friend’s knowledge of a job opening.64 Economic injustices, such as being paid less for the same work and receiving fewer promotions, despite meeting similar performance measures, are additional challenges and likely contribute to chronic stress and worsened health outcomes from discrimination.32 Neighborhood social cohesion has been linked to meeting physical activity recommendations.65 In turn, these contribute to less of a safety net and more vulnerability when dealing with a chronic disease such as PAH. Researchers of PAH suggest an association between low SES and worse outcomes in PAH.3,20 A lower SES is strongly associated with a higher risk of death in idiopathic PAH.66 This association is independent of clinical characteristics, hemodynamics, and treatment. Components of SES that could lead to disparities in health include the social environment, psychology, behavior, and physical environment.67 SES also has behavioral components, potentially affecting the likelihood of enacting health-related activities such as exercise and scheduled medication taking.68 A person’s perceptions of risk and severity of disease impact his or her own behavior and subsequently the success of an intervention which can result in disparate outcomes between different socioeconomic groups in PAH.
COVID-19 may aggravate an already fragile SES of patients, which may have a negative impact on PAH outcomes. The economic impact of the COVID-19 pandemic has had disproportionate impact on lower SES groups and minority communities,69 thereby compounding the health disparities already observed in PAH within these groups. Admittedly, the increased mortality risk associated with PAH observed in lower SES groups can be somewhat explained by hemodynamic factors, suggesting that delay in evaluation may be a contributing cause, although this is uncertain.2,66 However, someone with lower SES may lack health literacy and education, thereby limiting access to care with subsequent increased behavior-related risk factors that contribute to less activity, more deconditioning, and in turn worse outcomes.70
Social vulnerability refers to the potential negative effects on communities caused by external stresses on human health, such as disease outbreaks.71 The Centers for Disease Control and Prevention (CDC) Social Vulnerability Index (SVI) is a resource to help identify communities that may need support when a disaster occurs. More specific to the pandemic is another CDC resource, the COVID-19 Community Vulnerability Index, which combines the SVI with additional COVID-19-specific indicators to anticipate the communities that may experience the worst social and economic impacts.72 These tools are typically used by public health officials but can be used by practitioners and researchers working with PAH to identify patients at greater risk due to the pandemic that may need referrals for additional social work, financial, and mental health expert support.
Lower levels of education achievement have been associated with a greater chronic disease risk, worse health outcomes, and less adherence to health screening, with higher frequency of being diagnosed with advanced disease than those with higher levels of education achievement.31 People who read at lower levels are generally 2 to 3 times more likely to have adverse health outcomes than people who read at higher levels.73 Linguistic barriers can result in inadequate health communication, racial stereotyping, language discrimination, and bias against patients in the US with limited English proficiency, which can lead to unfair treatment and health inequities.2,74,75 The COVID-19 pandemic has amplified this unmet health communication need, which could be due to the increased demands on the health care system as a whole as well as the rapid increase in use of telehealth.74,76
To adequately prepare to care for patients with limited English proficiency, patient language abilities need to be documented and accessible in health system records.74 Clinicians entering encounters that are not language concordant tend to resort to less effective medical interpreting methods out of convenience, urgency, or lack of access to appropriate resources. Such scenarios can result in communication challenges, time constraints, and in turn, suboptimal medical care. In the setting of the COVID-19 pandemic and the increase in telemedicine use, inadequate medical interpretation resources and utilization likely further compound health disparities, especially for individuals with complex medical illnesses such as PAH. To ensure respect and trust for both the patient and provider, a multidisciplinary approach incorporating medical interpreters and social workers is recommended.3 A strategy proposed to reduce health inequities for linguistic minority patients and improve language-concordant care includes adding linguistic competencies, virtual strategies, and cultural humility skills to education and training curriculums.74
Health Care Access, Utilization, and Personal Health
Racial and ethnic minorities are at greater risk of inadequate access to health care facilities, lack of health insurance, and receipt of poorer quality medical care due to racial bias and discrimination.32,62,77 Discrepancies in insurance status and access may explain why minorities in the US receive fewer procedures and lower quality care across all clinical interventions.62,78 Gender and skin color have been shown to influence physician test ordering and diagnostic practices.79 Relevance is compounded by the COVID-19 pandemic because of the observation that physicians refer African Americans less for screening when symptoms are present.62 This is concerning for a disease such as PAH, which relies heavily on testing for diagnosing and treating patients, especially since early diagnosis and management in PAH are so critical to prognosis.6 Whether this trend of decreased testing in minorities translates to less referrals to PAH specialists is worth investigating. If there is reduction in referrals to PAH specialists, then this would also result in less or delayed access to PAH-specific therapies.
Preventative care has been impacted dramatically by the adaptations to care delivery adopted during the COVID-19 pandemic.80 Better utilization of preventative care can help reduce health and social inequities and improve overall health, especially in PAH. African-American adults have been shown to partake less in preventative health behaviors and have reduced health care engagement, which could be related to discrimination and mistrust.52 Reported rates of delaying necessary care are higher in Latinos and African Americans.2 Continued efforts have been made to reduce time to diagnosis in PAH by raising awareness and increasing access to specialists; however, racism has been associated with delaying and not getting health care.81 Racism is therefore another avenue we should target in order to reduce time to diagnosis. PAH specialists are uniquely positioned to help patients navigate the health care system to improve their outcomes, for example, by establishing their patients with primary care providers, encouraging regular follow ups for preventative care, and empowering and teaching their patients to use health services when they need it.82 In addition, increasing knowledge and awareness, particularly by primary care providers, around early diagnosis in PAH to help improve time to diagnosis, specialist referral, and early management of PAH can improve PAH health outcomes and prevent or decrease health disparities.9,78
Physicians have poorer communication with minorities especially in race-discordant patient-clinician relationships.83 Provider implicit bias and stereotyping have been linked to poor patient care ratings and poor visit communication, especially among Black patients.83 A partial but important solution to this is diversifying the health care workforce, including PAH teams, to more effectively address patients’ needs and social risk factors.78,84 Recruitment efforts to increase diversity among research investigators and health care providers are encouraged by the American Association of Medical Colleges.85 Researchers have indicated that underrepresented minorities, even those from high socioeconomic backgrounds, have a higher likelihood of working with underserved populations.78 Additionally, racial concordance in the patient-clinician relationship has been associated with better overall health outcomes, patient-clinician communication, adherence to medical instructions, and patient satisfaction.78,84 The US population is becoming increasingly diverse, and estimates show that current underrepresented populations will become the majority of the US population in fewer than 24 years.78 To increase diversity among PAH providers, mentee selection by PAH leaders in the field will greatly impact whether the PAH workforce can meet the demands of the increasing prevalence of PAH.
Another critical challenge to overcoming the poor communication experienced by marginalized individuals in health care and disparate clinical practices in health services is addressing stereotyping, prejudice, and implicit (unconscious) and explicit (conscious) bias by health care providers.31,77 It is unfortunate but worth noting that about 70% of health care providers exhibit implicit bias, which is about the same observed in the general population.78,86 These implicit biases are normal, natural, subtle, and often subconscious.77 Researchers on implicit biases have shown they may affect medical decisions and quality of communication with patients.78,81,86
Prejudice against minorities, stereotypes around health or behavior of minorities, and clinical uncertainty surrounding interactions with minorities contribute to disparities in health care.83 More implicit bias and stereotyping has been associated with greater clinician-dominated visit dialogue, lower trust and confidence, less warmth and friendliness, negative patient ratings, less involvement of patients in treatment decisions, poorer communication, and ultimately poorer patient care.78,83,87 Implicit association test scores representing more racial bias foresaw less smiling, social comments, speaking time, and speech fluency as well as more errors in speech.87,88 Experiences of discrimination in health care settings may result in less adherence to recommendations, delaying medical care, and influencing future health service use.31,81 In contrast, patient-centered communication has been correlated with increased trust by patients, which is linked to better continuity of care and greater adherence.83 When diseases such as COVID-19 and PAH combine, which disproportionately affect Black populations, the impact of implicit bias becomes magnified, which therefore makes it worth determining and researching our own practice within PAH. Some potential ways to combat discrimination, implicit bias, and inequity in health care may include increasing awareness, lifelong education, and making a shift toward cultural safety.32,89 Cultural safety requires that health providers question their own biases and prejudices.89 Mindfulness practice or meditation training is an emerging intervention with evidence suggesting that it can reduce implicit bias activation, increase awareness, enhance control of responses once implicit bias is activated, elevate self-compassion, increase compassion toward patients, and decrease internal sources of cognitive load such as burnout, stress, and compassion fatigue.90
Due to systemic disinvestment and the inequitable distribution of health care services, it is more difficult to attract health care providers to predominantly minoritized and marginalized neighborhoods because, with fewer resources and opportunities, facilities are of less quality, reimbursement may be lower, and most clinicians do not have the same level of educational qualifications as more advantaged health care systems.32 Health systems and providers in these areas may also be more challenging to access for increasing PAH awareness, which could result in fewer or slower referrals to specialty PAH centers for these patients. This could be contributing to the likely underdiagnosis of PAH. The increase in use and acceptance of telemedicine because of the COVID-19 pandemic makes it more convenient for many patients that live far from specialty care, but if the referring providers are unaware of the easier access, appropriate patients for referral may fall through the cracks.
An increase in telemedicine use and expansion in telemedicine reimbursement have occurred during the COVID-19 pandemic.57,80 Telemedicine has the potential to mitigate or exacerbate health disparities. Although telemedicine has increased access to care for PAH patients during the COVID-19 pandemic with 97% of PAH centers now offering telehealth, it may have also created obstacles to care for certain patients without access to the Internet or video-enabled devices.57 Patients with lower SES, who live in areas with limited broadband Internet coverage or who have low technological literacy, may be particularly affected. Researchers suggest female, older, poorer, and non-English-speaking patients are the most vulnerable to inequities in routine outpatient care because of inequitable access to telemedicine in the current COVID-19 era.91 A recent observational study found Black people with larger household sizes and ZIP codes identifying them as having a lower mean income were less likely to use telemedicine.92 Patients with limited English proficiency had >50% lower telemedicine utilization, which could be related to a variety of reasons that needs further investigation.92 Some potential components include unsatisfactory or unavailable virtual interpreter services, loss of insurance, providers not being comfortable using virtual interpreter services, patient distrust, concern with privacy, scheduling barriers, and not knowing interpreter services were needed at the point of scheduling. More coordinated processes are needed to streamline and improve the patient experience for patients with linguistic barriers such as translating instructions, structured electronic documentation of language abilities and preferences, and making interpreter services available at all points of health care system contact.91
Access to the Internet and mobile technologies is a SDH.74 Populations with lack of access to technology are usually the same populations that are underserved with poor health outcomes. Solutions are needed for reducing the digital divide. Using low-cost Wi-Fi hotspots, Internet service provider program offers, insurance coverage including full payment parity between audio and video visits, portable hotspots, and health care institutions providing creative services or partnering with service providers are potential solutions. Further investigation in this area is imperative. Other barriers that may need to be addressed include the device having video capabilities, reliability of the Internet connection, Wi-Fi signal strength, patient privacy, and user-friendly interface design and experience.
The decreased use of video and telemedicine by women may be of particular concern in PAH since there is a higher prevalence in women, and it is worth determining whether these results were influenced by the COVID-19 pandemic or if this will be a barrier to overcome in the future.91 Proper attention to equity and the foundation for telemedicine being developed now are critical since, like other health informatics tools such as electronic health records (EHRs), telemedicine will continue to be used beyond the current pandemic.
Recommendations for SDH documentation in EHRs have been provided by the Institute of Medicine to help standardize integration, collection, and presentation of SDH metrics.93,94 SDH information in EHRs can make information more available to care teams that could assist in clinical decision making and target outreach.94,95 With regard to PAH, effectively designed and implemented EHRs could support providers in facilitating, tracking, and triaging patient referrals to PAH specialists and community resources, especially during the COVID-19 pandemic, when so many patients are at risk of being lost to follow-up due to cancelation of in-person clinics and concern with accessing health centers in general.
Research in PAH
Research examining racial differences in treatment of PAH has been limited. Differences in response and treatment benefit with endothelin receptor antagonists (ERAs) in women and Whites have been shown.18 Variations in prescribing practices and medication use in PAH by race and ethnicity have been shown, but the reasons behind such patterns are unclear. Based on the REVEAL Registry, Black patients were less likely to be prescribed phosphodiesterase-5 inhibitors, and Hispanic patients were less likely to be prescribed ERA therapy.23 Hispanic patients have been found to be treated with less PAH-specific medications in general.18 Racial and ethnic minorities are less likely to have health insurance, and for minorities with PAH, the lack of health insurance may have the greatest impact on their quality of care and could play a part in prescribing patterns.2 Reimbursement for PAH testing and treatment, in general, can be challenging, requiring a high administrative burden, so it is unsurprising that a discrepancy exists between PAH patients with versus without health insurance for PAH stages of diagnosis and PAH treatments received.2
Clinical research programs have been significantly impacted by COVID-19. Due to the pandemic, in-person intakes and enrollment into PAH registries, such as the Pulmonary Hypertension Association Registry, have been halted. This results in a risk of not capturing PAH patients during a large window of time when they are at higher risk and when there is more likelihood of creating a greater gap in health disparities. Historically, patient registries have inadequately represented racial and ethnic minorities.3 It is important for registries to ensure adequate representations of minorities and to capture a diverse geographic group of patients. This is a challenge while the pandemic is ongoing. Current PAH registries may already be unrepresentative of the PAH patients who are most vulnerable, are discriminated against, are uninsured, have a lower SES, do not trust the health care system and its providers, and do not get referred or are unable to obtain access to PAH specialty centers. Additionally, PAH registries may not be capturing some of our sickest patients because they are less likely to be enrolled into registries due to the burden of obtaining consent and prioritizing patient care. To adequately capture the true impact of COVID-19 on PAH, including undiagnosed patients, we will need to explore novel ways of obtaining data from other sources, such as EHRs, death certificates, case studies, or even anecdotal sources, in turn diversifying those involved in our research program, both from an enrollment as well as operational standpoint. This may provide an opportunity to innovate and potentially create new ways and sources of collecting data.
A Call for Action
Previous work on multiple types of simultaneous socioeconomic hazards suggests that a more integrated, collaborative approach is necessary to consider a possible accumulation of risk from a mix of different types of harmful exposures.29 For example, 25% of patients with PAH have depression, which is much higher than 6.7% of the general population. Despite this, less than a quarter of the PAH patients with depression have had their depression treated.96 This form of intersectionality requires an expanded team of care providers to be involved in the management of PAH both during and beyond these socially complex times. There is also a need to consider the framework of intersectionality to address populations with multiple minority or marginalized identities as well as the role of technology and long-term effects of the COVID-19 pandemic in PAH prevalence, diagnosis, and management.96,97 Since the nature, impact, and intensity of exposure to discrimination, health risks, behaviors, and influences change over time, taking a life course perspective of health inequities has been suggested. The work in studying and reforming health disparities in PAH requires transdisciplinary collaborations involving social scientists, health care professionals, economists, and policy experts, among others. A life course perspective considers whether experiences at specific periods of development are more harmful than others, how the harm from experiences may accumulate over time and increase risk of exposure later in life, whether events affecting one person can disrupt others in their network, stress proliferation, and how social change and historical events change one’s pathway in life uniformly across birth cohorts or differentially among individuals.98 Experiences with and responses to discrimination differ among different races, ethnicities, and gender, suggesting researchers of discrimination and PAH may need to consider other marginalized groups and intersectionality as well as examining these groups separately.34,37,99 The magnitude to which effect measure modification exists may help guide future exploration to differentiate between confounders and mediators as more research in this area is conducted.
The COVID-19 pandemic has impacted every facet of life in 2020. Preexisting disparities in health care have been magnified, including as they pertain to PAH. Additional research to further identify and explore the interrelations between factors contributing to health inequity in PAH and how these have been exaggerated by the social and economic unrest from COVID-19 is needed to guide medical professionals on how to approach barriers and intervene effectively to eliminate and prevent health disparities.
Dr. Ryan and his research are supported by the Gordon family.