Beneath the surface: a narrative review of multidimensional burdens and pathways to patient-centered care in PAH

Abstract

Pulmonary arterial hypertension (PAH) is a progressive, life-altering disease that imposes profound physical, psychological, and economic burdens on patients and caregivers. Therapeutic advances over the past three decades, most recently the introduction of sotatercept, have improved survival and functional outcomes. Despite this, many of the most pressing needs remain unseen, particularly those related to health-related quality of life (HRQoL). Patients often face years of diagnostic delays, and once diagnosed, experience fragmented care delivered across subspecialties. Rural, minority, and low-income populations encounter disproportionate barriers to specialty access, underscoring the role of social determinants of health (SDoH) in shaping outcomes. Alongside these systemic barriers, patients report high rates of depression, anxiety, fatigue, and social isolation—burdens that are frequently underestimated in clinical practice. To better capture the lived experience of PAH, patient-reported outcome measures (PROMs) provide insights beyond hemodynamic and survival metrics. HRQoL instruments such as the SF-36, CAMPHOR, PAH-SYMPACT, and EmPHasis-10 demonstrate validity in identifying high-risk patients, measuring treatment effects, and predicting outcomes. Despite their promise, challenges such as unclear minimal clinically important differences (MCIDs), workflow barriers, and limited uptake have hindered widespread integration. In parallel, supportive and palliative care services remain underutilized, despite strong evidence that early adoption improves symptom control, communication, and quality of life. This state-of-the-art narrative review proposes a two-tier framework for understanding PAH-related burdens. Patient-level burdens—including psychological distress, functional limitations, and treatment burden—can be addressed through integrating PROMs, HRQoL instruments, palliative, and mental health care. System-level burdens—driven by SDoH, racial and ethnic inequities, geographic barriers, and insurance gaps—require policy reforms, telehealth expansion, community partnerships, and greater diversity in research and clinical trials. Future progress in PAH depends on aligning therapeutic advances with what matters most to patients. Embedding specific PROMs into risk stratification, establishing MCIDs, leveraging digital tools for longitudinal monitoring, and integrating multidisciplinary and palliative services into pulmonary hypertension (PH) clinics will advance patient-centered care. Simultaneously, addressing system-level inequities through policy, community, and research initiatives will ensure equitable access and outcomes. By moving beyond survival to encompass the full spectrum of lived experience, PAH care can evolve into a holistic, patient-centered model.

Introduction

Pulmonary hypertension (PH) encompasses a group of disorders characterized by high pulmonary arterial pressures and is often associated with progressive lung and heart disease. Pulmonary arterial hypertension (PAH), a form of PH, is a progressive, life-altering disease characterized by a proliferative and obliterative vasculopathy of the pulmonary arteries, ultimately leading to right heart failure and premature death.^1,2 Hemodynamically, it is defined by a mean pulmonary arterial pressure (mPAP) >20 mmHg, a pulmonary capillary wedge pressure (PCWP) ⩽15 mm Hg and a pulmonary vascular resistance (PVR) >2 wood units at rest, as assessed by right heart catheterization.^1,2 The prevalence is estimated at 48–55 cases per million, with an incidence of ~6 cases per million per year. ²

During the 1st World Symposium on Pulmonary Hypertension (WSPH) convened by the WHO (World Health Organization) in 1973, five clinical subtypes were identified based on the cause of pulmonary hypertension: group 1, PAH; group 2, PH from left-heart disease; group 3, PH resulting from chronic lung disease; group 4, chronic thromboembolic PH (CTEPH); and group 5, PH with unclear or multifactorial mechanisms.^1,2

Since the first recognition of primary pulmonary hypertension (as PAH was then known) as a distinct entity at the 1973 WHO meeting, survival rates have improved from the dismal 5-year observed survival rate of 34% in high-risk patients in the NIH(National Institutes of Health) registry. ³ Successive WSPH have refined this classification, with the most recent (6th and 7th WSPH) iterations further emphasizing risk stratification and the patient perspective.^2,4 Therapeutic advances—including prostacyclin analogues, endothelin receptor antagonists, PDE-5 inhibitors, and most recently sotatercept, a first-in-class activin signaling inhibitor—have transformed PAH care over the last three decades.^2,5–7

In the most recent clinical trials, sotatercept improved hemodynamics, biomarkers, and functional outcomes even in patients with very advanced, end-stage PAH.^5,8,9 Yet, despite remarkable improvements in survival and disease modification, patient-reported assessments in clinical trials have shown inconsistent effects on health-related quality of life (HRQoL) indices, underscoring a persistent gap between clinical outcomes and patient-centered goals.^6,8–10

This narrative review synthesizes approximately two decades of published literature identified through biomedical database searches, prioritizing clinically relevant studies that examine the multidimensional burden of disease in patients with Group 1 PH or PAH. We propose a two-tiered framework to classify these burdens: (1) Patient-level burdens, which encompass symptoms, functional limitations, and psychosocial distress, and (2) System-level burdens, which include diagnostic delays, socioeconomic inequities, racial/ethnic disparities, and barriers to access. We further highlight the tools available to address each tier—patient-reported outcome measures (PROMs) and palliative care for patient-level burdens, and community, policy, and equity-driven interventions for system-level burdens. By emphasizing this dual perspective, we aim to highlight both the progress-to-date and future directions in aligning therapeutic strategies with what matters most to individuals living with PAH (Figure 1).

Figure 1.

Unseen burdens in PAH.

A two-tier model of burdens associated with PAH

Patient-level burdens

Mental health-related burden

Patients with PAH often experience significant psychological distress that often begins prior to diagnosis, driven in part by delays in achieving an accurate diagnosis. Once diagnosed, PAH patients consistently report impaired HRQoL, with disproportionately low scores in both physical and mental domains. ⁸ Using the SF-36 (Short Form-36), a generic HRQoL measure, PAH patients report depressed scores across general health, physical functioning, physical and emotional domains, including markedly reduced physical (PCS) and mental (MCS) summary scores. ¹¹ Depression and anxiety can be more pronounced in prevalent cases, and disease-related markers have been associated with higher Hospital Anxiety and Depression Scale (HADS) scores. ¹² Notably, psychological outcomes do not always track with worse hemodynamics—suggesting that even patients with well-controlled disease may suffer substantial emotional distress, possibly related to treatment burden.^12,13 Moreover, PAH patients with comorbid depressive or anxiety disorders are associated with greater healthcare needs and higher healthcare utilization.^12,14,15 Compared with other serious illnesses, the HRQoL impact of PAH matches or exceeds that of COPD, renal failure, interstitial lung disease, spinal cord injury, and treatment-resistant cancer. ⁸ Depression affects a large proportion of patients.^14,15 Panic and anxiety disorders occur in 20%–50% but are often underreported.^13,15

Emotional and social burden

Chronic breathlessness, fatigue, and exercise intolerance all contribute to patients’ inability to have a meaningful quality of life. Inability to work, financial strain, social isolation, loss of purpose, and caregiver burden all influence the poor mental health of PAH patients.^14,16 This disease’s impact on meaningful activity, employment, and relationships further compounds distress, leading to caregivers themselves frequently reporting depressive symptoms. ¹⁷ As the disease disproportionately affects women, loss of intimacy and sexual relationships compounds the emotional and social challenges patients face. ¹⁸

Functional burden

PAH profoundly limits exercise capacity and daily functioning. Symptoms such as chronic dyspnea, fatigue, and reduced stamina contribute to progressive disability and loss of independence. ⁸ Given the rarity of PAH, patients often experience delays (often 2–3 years) in getting an accurate diagnosis.^19,20 Such delays contribute to distress, with many patients initially misdiagnosed with psychiatric conditions.^17,19,21 Surveys of PAH patients also reveal a high prevalence of depression, anxiety, and panic disorders, often independent of the hemodynamic severity of their PAH.^14,15,22 Loss of identity, social isolation, and impaired sexual health (particularly among women) further exacerbate this functional burden.^17,18

Economic burden

In addition to the physical and emotional burdens of PAH, this disease also exerts a profound financial toll. Up to 85% of patients report impacts on employment and income, with many transitioning to disability status early in their disease course. ¹⁷ Caregivers similarly experience strain, reporting depressive symptoms, economic hardship, and loss of intimacy.^17,23–26 A delayed diagnosis of PAH also contributes to higher healthcare utilization, hospitalizations, and costs. ²⁷

Systems-level burdens

An overview of social determinants of health

Social determinants of health (SDoH) are non-medical factors that influence disease management and outcomes. ²⁸ They include economic stability, education, food access, physical environment, access to healthcare systems, and social context. In cardiovascular disease, adverse SDoH are associated with an increased risk of stroke, myocardial infarction, heart failure, and mortality, while favorable conditions are protective.^29,30 These dynamics are particularly relevant in PAH, where patients face diagnostic delays, dependence on costly long-term medications, and a need for specialty care. Recognizing how SDoH affect PAH care can help identify vulnerable populations and inform strategies to reduce disparities.

Diagnostic delay–related burden

Because symptoms are vague, many report anxiety during the diagnostic process after seeing several providers. ²¹ Despite advances in therapeutics and global awareness, the average time from symptom onset to diagnosis remains 2–3 years, causing substantial anxiety and stress at the time of recognition.^19,20 Misdiagnoses are frequent; reports from large registries and surveys confirm that many patients are initially classified incorrectly.^19–21 Anxiety and panic disorder accompany the gender bias in medicine, which women are especially prone.^19,21,31 Younger patients (<36 years) are at greater risk for diagnostic delays, facing significant morbidity and impaired quality of life during formative years—factors that contextualize the heightened emotional burden and higher prevalence of anxiety and depression in this group.^19,20

Socioeconomic and geographic inequity–related burden

Analysis of the Pulmonary Hypertension Association Registry (PHAR), which enrolled over 1200 newly diagnosed PAH patients in the United States between 2015 and 2020, led to the development of the Pulmonary Hypertension Association Registry Evaluation (PHARE) model. This tool incorporated demographic and socioeconomic variables—including race, income, education, and insurance status—and predicted mortality, hospitalization, or clinical worsening. ³² Consistent with prior studies, diagnostic delays of 3–4 years are common, with even longer delays in regions lacking specialty centers.^19–21 Rural residence independently predicts increased mortality, even after accounting for poverty and comorbidities, likely reflecting limited access to both primary and specialized cardiovascular care.^31,34 Over half of these patients also had coexisting cardiopulmonary disease, suggesting that PH may serve as a marker of advanced cardiovascular burden in these settings.^30,33

Racial and ethnic disparity–related burden

The impact of race and ethnicity on PAH outcomes is complex and often controversial. Minorities are consistently underrepresented in registries and clinical trials, where 70%–80% of participants are White.^34–36 In large registry analyses, only 57% of Hispanic patients received PH-targeted medications compared with 78% of African Americans and 70% of non-Hispanic Whites. ³⁷ These disparities extend to outcomes, with Hispanic patients experiencing more frequent emergency visits and hospitalizations, driven by socioeconomic disadvantage, lack of insurance, and language barriers.^36–38 African American patients, meanwhile, show a higher prevalence of connective tissue disease–associated PAH and greater right ventricular (RV) dysfunction, though observed survival differences attenuate after adjusting for insurance and access. ³⁹

The COVID-19 pandemic further exposed inequities: in semi-structured interviews, PH physicians at 17 U.S. centers identified food and housing insecurity, unstable employment, limited family support, and lack of transportation as major contributors to patient vulnerability. They also noted that social isolation, mental health challenges, and substance use exacerbated inequities, despite the expansion of telemedicine. ⁴⁰

Genetic ancestry and inequity–related burden

Beyond the controversial limitations of self-identified race and ethnicity, genetic ancestry studies now provide additional insights. Structure-based admixture models using markers of African, European, and Native American ancestry identified independent predictors of mortality and transplant-free survival. African ancestry correlated with reduced exercise capacity and higher mortality, while Native American ancestry was paradoxically associated with lower mortality, despite Hispanics demonstrating higher pulmonary vascular resistance and mPAP. ³⁹ These findings highlight the challenge of disentangling biological contributions from structural inequities and underscore the need for more diverse enrollment in registries and trials as precision medicine approaches expand.

Insurance and access–related burdens

Insurance status remains a crucial driver of outcomes. In a Hispanic PH cohort along the U.S.–Mexico border, lack of insurance and unemployment predicted higher five-year mortality. ³⁸ Latent variable modeling showed that older patients who were unmarried, largely uninsured, and unemployed, and who had more severe hemodynamic disease, carried the highest risk of poor outcomes, independent of insurance status. ³⁸ At two large referral centers, black patients were found to have more advanced pulmonary vascular disease, reduced RV function, and higher rates of diabetes than White patients. However, the initial finding of worse survival was eliminated after adjusting for insurance status, underscoring the key role of healthcare access and coverage in determining outcomes. ³⁰ Similarly, survival differences in Hispanic PAH cohorts were eliminated when adjusted for SDoH, ³⁸ suggesting a key driver of survival is access to quality healthcare. Finally, although therapies for PAH have developed rapidly in the last 20 years, the high cost of novel treatments poses challenges in equally effective therapy to all patients.

Finding solutions to tackle patient-level burdens associated with PAH: Improving HRQoL

Divergence between clinical and patient priorities

The management of PAH requires a careful alignment between providers’ treatment priorities and patients’ personal goals. Clinicians have historically focused on improving survival and alleviating symptoms, reflecting the disease’s progressive and fatal nature. ² The central role of RV dysfunction in disease progression has led risk stratification tools to rely heavily on mortality predictors that are surrogates for the hemodynamic severity of the disease.^2,4 Functional class, an early form of risk stratification, not only predicts mortality but also serves as a proxy for symptom burden. More recent risk calculators incorporate a combination of clinical signs, exercise capacity, imaging, and biomarkers, but these still fall short of capturing the lived experience of patients. ⁴¹ Patients, however, often place equal or greater emphasis on their quality of life.^8,17,41,42

PROMs and HRQoLs can bridge the divide

This divergence in priorities underscores the importance of PROMs. Unlike clinician-based assessments, PROMs capture the patient’s own perspective on symptoms, functioning, and overall well-being.^9,43,44 In PAH, where comorbid depression, anxiety, and physical limitations are highly prevalent, these measures provide critical insights into HRQoL.^8,13,16 HRQoL instruments can help measure the impact of these symptoms on the daily life and functioning of PAH patients.^9,10,43,45 Incorporating PROMs alongside traditional risk assessments allows for a more comprehensive evaluation of disease burden and helps ensure that therapeutic strategies align with what matters most to patients.^46,47

This disconnect between provider and patient priorities can sometimes be captured in patient surveys. In one study of 276 predominantly female patients with PAH (85%), more than half reported significant deficits in quality of life, including fatigue (57%), impaired physical well-being (56%), diminished emotional well-being (49%), reduced social activity (49%), and pain (38%). ⁴⁸ While nearly all respondents (92%) felt that their PAH physician understood the medical plan of care, a majority (77%) expressed dissatisfaction with the degree of attention directed toward their quality of life. ⁴⁸ These findings highlight the gap between survival-oriented treatment strategies and patient-centered outcomes, reinforcing the need for systematic integration of HRQoL into PAH management.^8–10,44,49 Integration into routine clinical care, however, is affected by the proprietary nature of PROMs and the time constraints imposed on most U.S. health care delivery models.

Integration of PROMs into research and clinical trials

These observations suggest that patients are the most accurate judges of their own well-being. Combining clinician assessments with patient-reported HRQoL measures provides the most complete picture of disease burden and ensures therapeutic alignment.^{9,43,45,50,51} This recognition has gradually shaped the design of clinical trials. As early as 1996, Barst and colleagues incorporated QoL measures into a landmark trial of continuous intravenous epoprostenol. ⁷ Although survival remained the primary endpoint—and remains the only PAH trial to demonstrate a survival benefit—the inclusion of patient-reported dyspnea and health status signaled an early acknowledgment that traditional hemodynamic and functional measures alone were insufficient. ⁷

Since then, PROMs and HRQoL measures have been slowly making their way into PAH research and clinical studies.^8,10,43 Regulatory agencies have also recognized their importance: in 2006, the U.S. Food and Drug Administration issued guidance supporting PROMs as clinical trial endpoints to justify labeling claims for new therapies. ⁴³ Yet despite this encouragement, by 2015, fewer than 20% of PAH trials included QoL endpoints, and most of these treated them as secondary outcomes.^10,43 Barriers to widespread clinical adoption remain, including time constraints, uncertainty around minimal clinically important differences (MCIDs), interpretability, patient adherence, and administrative burden.^9,10,43,44

The 6th WSPH (2018) marked a turning point by dedicating a session to the patient’s perspective, emphasizing empowerment and partnership with clinicians and researchers. ⁴ Since then, both generic and disease-specific instruments have gained traction. Generic HRQoL measures such as the Medical Outcomes Study Short Form-36 (SF-36) have been used in clinical trials and validated against disease-specific PROMs, but their sensitivity to PH-specific issues is limited.^11,43 Disease-specific instruments—including ⁵² (Cambridge Pulmonary Hypertension Outcome Review), PAH-SYMPACT, EmPHasis-10, and the living with pulmonary hypertension questionnaire (LPHQ)—were developed to capture domains most relevant to PAH.^{17,45,46,52,53} CAMPHOR, though lengthy, has demonstrated sensitivity to treatment response and correlation with clinical outcomes.^52,53 PAH-SYMPACT, developed to the U.S. Food and Drug Administration(FDA) standards, covers the broadest symptom range but faces cost and implementation challenges; its one-day version shows promise for future use.^46,47,54 EmPHasis-10, in contrast, is brief, widely validated, generalizable across PH subgroups, and easily integrated into electronic health records, making it the most practical tool for routine clinical care.^{45,50,51,55,56}

Insights from patient studies: HRQoL as a unique and targetable endpoint

A large group of 691 patients from the Pulmonary Vascular Disease Phenomics (PVDOMICS) cohort study reported depressed QoL scores (EmPHasis-10, SF-36, MLHFQ) across the spectrum of WSPH groups. ⁵⁰ Interestingly, while these self-reported measures correlated well with functional capacity, they did not necessarily reflect disease severity: those reporting the worst symptoms often had more cardiac comorbidities but fewer markers of severe RV dysfunction. ⁵⁰ This echoes findings from an international study comparing disease severity and burden, in which PAH patients reported worse suffering than those with end-stage renal disease or chronic obstructive pulmonary disease. ⁸ These results suggest that HRQoL captures dimensions of suffering not explained by hemodynamics alone and may identify patients in need of additional symptom control.^8,50

Recent trials further illustrate the value of PROMs. In the PHAR, EmPHasis-10 scores correlated with disease severity and social determinants, underscoring the multifaceted drivers of HRQoL.^30,51 More recently, the ZENITH trial of sotatercept demonstrated that even among patients with advanced PAH already on intensive therapies, PROMs captured clinically meaningful improvements in quality of life. ⁵³ Specifically, patients receiving sotatercept reported gains on the EuroQol EQ-5D-5L index compared with placebo, alongside reductions in death, transplantation, and hospitalization. ⁵³ In this profoundly ill population, improvements in patient-reported outcomes may reflect both enhanced functional capacity and relief from the heavy burden of disease and therapy.^8,53 The four most widely used disease-specific PH instruments include the emPHAsis-10, PAH Sympact (Pulmonary Arterial Hypertension—Symptoms and Impact), CAMPHOR (Cambridge Pulmonary Hypertension Outcome Review), and LPHQ. Individual characteristics of these instruments can be found in Table 1.

Table1.

Disease-specific patient-reported outcome measures.

PROM	PH group	Domains	Brief description	Approximate completion time(minutes)	Time period assessed	Number of items	MCID
CAMPHOR 52	PAH, CTEPH	Three domains:1. Symptoms overall, including energy, breathlessness, and mood (25 items)2. Functioning in terms of activities (15 items)3. QoL (25 items)No Global ScoreHealth Utility Index	Symptoms: yes/no (1/0) Activities: 3-point (0–2) Likert scaleQoL: true/false (1/0)6-point	6–24	Today	65	Activity -3, Symptoms -4, QoL -3
EmPHAsis-1045,50,51,55	PAH, CTEPH, All PH groups	Global Score on 10 individual items	6-point semantic differential scale	5–10	“Recent experience”	10	−6 to −8 depending on source
PAH-SYMPACT46,51,52,55,57	PAH, CTEPH, Chronic Lung Disease PH	Four domains:1. Symptomscardiopulmonary (6 items) 2. Symptoms cardiovascular (5 items).3. ImpactsPhysical (7 items)4. Impacts Cognitive/Emotional(4 items)Oxygen use (1 item)No Global Score	6-point Likert scale	5–7	Recall Symptoms within 24 hRecall Impacts within 7 days	23	None established
LPHQ9,10,58	PAH	Two domains:Physical (8 items), Emotional/psychological (5 items)Global Score	6-point (0–5) Likert scale	5–10	7 days	21	3 points for the subscales and 7 for the total score
PAHSIS10,59	PAH	17 individual items	11-point semantic scale	<10	1 month	17

CAMPHOR, Cambridge pulmonary hypertension outcome review; Living with PH, living with pulmonary hypertension questionnaire; PAHSIS, pulmonary arterial hypertension symptom interference scale; PAH-SYMPACT, pulmonary arterial hypertension symptoms and impact questionnaire.

Together, these findings highlight the growing recognition of HRQoL not merely as a descriptive outcome but as a targetable endpoint in both research and clinical practice. PROMs bridge the gap between survival-driven management and patient-centered care, ensuring that therapeutic advances in PAH translate into meaningful improvements in the lives of those affected.^{8,10,45,49,53}

Finding solutions for system-level burdens for patients living with PAH

Reducing delays in diagnosis

Timely recognition of PAH remains a challenge, particularly in rural and underserved settings.^19–21,30 Enhancing referral networks for primary care and specialty providers can support earlier identification. Telehealth and e-consult platforms accelerate access to specialist evaluation and have been shown to bridge geographic gaps in pulmonary hypertension care.^40,60 Outreach programs and satellite clinics linked to PH centers can complement telehealth efforts and ensure equitable specialty care access.^60,61

Targeting socioeconomic and geographic inequity

Socioeconomic disadvantage and rurality are strong predictors of poor outcomes in PAH. ³⁰ Expanding insurance coverage—including Medicaid and rare disease drug programs—can mitigate financial barriers. Embedding SDoH screening into clinics enables early identification of at-risk patients, while community partnerships can deliver tangible support such as transportation, housing assistance, and medication access.^32,40 Digital health interventions, including mobile apps and self-management platforms, offer promising avenues for underserved populations.^60,61

Advancing racial and ethnic equity through community engagement

Minority patients with PAH often face underrepresentation, and structural barriers to care strategies to improve health equity include mandated diversity in registries/clinical trials, culturally centered patient education, and training providers in equitable care. Embedding community health workers—or promotoras in Hispanic communities—has proven effective in bridging cultural, linguistic, and trust barriers in enhancing healthcare access.^62,63

Integrating genetic ancestry and testing into equitable research and clinical practice

Genetic ancestry influences PAH outcomes independent of hemodynamic severity. ³⁹ Expanding research registries to include ancestry and social data can improve predictive models and support equity-aware precision medicine. As the call to promote genetic testing for precision medicine in cardiovascular disease increases, an appropriate environment should also include access to genetic counseling, as adequate counseling systems are lacking in settings. Validating PROMs across diverse populations ensures outcomes research remains inclusive and accurate.

Ensuring insurance coverage and multidisciplinary integration

Insurance insecurity contributes to poor outcomes among underserved PAH populations.^30,34 Expanding drug coverage, removing cost barriers, and integrating pharmacy, social work, and mental health into PH clinics can reduce fragmented care. Community-based care pathways—akin to oncology survivorship programs—offer models for coordinated patient-centered care. ⁶⁴ Public health officials and PH advocates can lobby for fair drug pricing policies and improved access to national insurance systems such as disability and social security insurance (Figure 2).

Figure 2.

Proposed model and solutions.

Palliative care services as a patient partner and way forward

The PH care community continues to develop solutions to improve symptoms, quality of life, and structural barriers to care. Palliative care, though underutilized, represents a key avenue for improving patient–provider communication, symptom control, and culturally centered goal-concordant care. Integration of primary palliative care practices within PH teams fosters stronger therapeutic relationships, clearer understanding of patient goals, and improved perceptions of quality of life.^65–68

Despite recognizing its importance, most referrals to specialist palliative care still occur late in the disease trajectory, often in inpatient or end-of-life settings. Registry and claims-based data suggest referral rates remain below 3%, despite both clinicians and patients reporting that palliative services are acceptable and potentially beneficial.^69,70 Importantly, studies indicate that patients with negative perceptions of palliative care often report greater symptom burden and emotional distress, suggesting that late adoption in advanced disease may exacerbate suffering rather than relieve it. ⁷¹

Palliative care clinics can also serve as a key touchpoint for identifying system-level burdens. Because these services often integrate social work, case management, and mental health support, they are uniquely positioned to detect barriers related to insurance, transportation, housing, and health literacy. By linking patients to community resources and supportive programs, palliative care not only addresses symptoms but also connects patients with broader interventions that mitigate disparities rooted in SDoH.^24,64

Mental health and supportive care services remain underutilized in PH, despite the high prevalence of depression, anxiety, and sexual health concerns. Embedding psychologists, social workers, and dedicated support staff within PH or palliative clinics could normalize mental health support, improve adherence, and reduce caregiver strain.^11,12,18,64 Ultimately, shifting palliative care upstream—from late-stage referral to early, routine integration—can align care more closely with patient priorities while simultaneously serving as an entry point to address systemic barriers.

Conclusions

Future PAH care must move beyond traditional physiologic outcomes to fully integrate the patient’s perspective while also addressing broader systemic inequities. A two-tier approach provides a useful framework for advancing both domains of burden:

Patient-level burdens such as symptoms, functional limitations, and psychological distress can be systematically captured using PROMs, and HRQoL instruments. Incorporating these tools into risk stratification models and clinical workflows will enable clinicians to evaluate outcomes that matter most to patients. Establishing MCIDs and deploying digital platforms (e.g., electronic EmPHasis-10) can facilitate longitudinal monitoring and integration into routine practice. Early palliative care and supportive services, including embedded mental health and social work, are critical adjuncts to ensure patient-centered care and improved quality of life.

System-level burdens, including delays in diagnosis, socioeconomic barriers, racial and ethnic disparities, geographic inequities, and insurance-related gaps—require broader interventions. These include policy and equity initiatives to expand insurance coverage, improve access to rare disease therapies, and incentivize equitable distribution of PH expertise. Telehealth, outreach networks, and community partnerships can reduce diagnostic delays and mitigate socioeconomic barriers. Research initiatives incorporating genetic ancestry and SDoH, into registries and precision medicine approaches will help disentangle biological from structural drivers of inequity. Palliative care clinics, in addition to addressing symptoms, can serve as entry points to identify system-level barriers and connect patients with community and policy resources.

In conclusion, despite therapeutic breakthroughs, PAH patients continue to face profound burdens that extend well beyond hemodynamics or survival. By addressing patient-level burdens through PROMs and supportive/palliative care, and system-level burdens through structural, policy, and equity-driven interventions, the field can evolve toward a truly patient-centered model of care. This dual framework ensures that therapeutic advances are translated into outcomes that not only prolong life but also improve the lived experience of those with PAH.