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. 2026 Apr 14;8(8):1041–1051. doi: 10.1016/j.cjco.2026.04.001

Socioeconomic Burden of Pulmonary Arterial Hypertension in Patients and Caregivers: A Canadian Cross-Sectional Study

Brandon Budhram a, Jamie Myrah b, Cynthia M Westerhout c, Courtney Gubbels c, Wendimagegn Alemayehu c, Evelyn Budd d, Theodore Abraham d, Jason Weatherald c,e,∗
PMCID: PMC13480209  PMID: 42609825

Abstract

Background

Pulmonary arterial hypertension (PAH) is a serious condition that can impair daily functioning, employment, and quality of life for working-age individuals. We evaluated the real-world socioeconomic burden of PAH on patients and their caregivers.

Methods

We conducted a cross-sectional survey of adult Canadian patients between August15, 2023 and October 9, 2023. Using the Work Productivity and Activity Impairment Questionnaire, the EQ-5D Visual Analogue Scale, and additional survey items, we assessed employment status, work limitations, changes in work patterns, quality of life, and perceived caregiver burden. Predictors of employment were identified using multivariate logistic regression.

Results

Among 217 participants, 61 (28%) were employed. Working participants reported high presenteeism—that is, impairment while working, due to PAH (50%, interquartile range [IQR] 10, 70). Older age (odds ratio [OR] 0.62, 95% confidence interval [CI] 0.54-0.72, P < 0.001), worse functional class (III-IV compared to I-II; OR 0.38, 95% CI 0.17-0.82, P = 0.014), increased time from PAH diagnosis (OR 0.72, 95% CI 0.54-0.95, P = 0.022), and parenteral prostanoids (OR 0.30, 95% CI 0.09-1.00, P = 0.050) were associated with lower odds of employment, while being in a living-together relationship (OR 3.58, 95% CI 1.40-9.17, P = 0.008) was associated with being employed. Caregiver support was required by 92 patients (45%), with caregivers contributing a perceived median of 15 hours (IQR 6, 35) per week and losing an estimated 4 hours (IQR 0, 10) of potential work hours per week.

Conclusions

PAH imposes a substantial socioeconomic burden on patients and caregivers. Patients with PAH experience low rates of employment, high presenteeism, and significant caregiver work loss. These findings highlight an underrecognized aspect of PAH care.

Keywords: pulmonary arterial hypertension, employment, work productivity, socioeconomic burden, caregiver burden, quality of life

Pulmonary arterial hypertension (PAH) is a serious condition characterized by pulmonary vascular remodelling, high pulmonary arterial pressure, and right ventricular dysfunction, which often lead to adverse clinical, functional, and patient-related outcomes. PAH frequently affects working-age individuals,1,2 with a global prevalence estimated at 48-55 cases per million adults.3 As the disease progresses, patients commonly experience chronic, disabling symptoms, including exertional dyspnea, fatigue, peripheral edema, and pre-syncope or syncope. The functional limitations imposed by the disease can carry major socioeconomic consequences by limiting employment, productivity, and quality of life associated with workplace- and activity-related limitations. Work participation is further challenged by medication side effects, frequent medical appointments and/or hospitalizations, and complex treatments such as parenteral infusions.4

Although the broad socioeconomic burden of chronic cardiovascular conditions has been reported in the literature,5, 6, 7, 8 robust data specific to patients with PAH are sparse. Similar to patients with other chronic lung diseases, patients living with PAH may experience multifactorial socioeconomic hardships, particularly as symptoms and disease severity worsen. In addition, the progressive decline in functional capacity seen in these patients frequently necessitates support from caregivers to complete regular daily activities. Caregivers of patients with PAH face significant lifestyle disruptions, including difficulty balancing personal responsibilities and patients’ needs, feelings of being inadequately prepared for the caregiving role, social isolation, and substantial mental and physical strain.9 Although the multifaceted role of caring for patients with PAH has a considerable impact on a caregiver’s life, the potential socioeconomic consequences related to employment and work productivity remain unclear.

Increasing attention is being directed toward understanding the real-world experiences of patients living with PAH, emphasizing the importance of patients’ perspectives when developing comprehensive, patient-centred management strategies. The use of patient-reported outcomes—including employment and other work-related metrics—for patients and their caregivers offers important insights into the extent of disability caused by PAH. This study aims to evaluate the socioeconomic burden of PAH on patients and their caregivers, with an emphasis on workplace- and activity-related limitations.

Materials and Methods

Ethics and oversight

Ethics approval was obtained from the appropriate institutional research ethics board. This research was conducted via a joint collaboration among an academic research centre, a national patient advocacy organization, and an industry partner, and it was financially supported by the industry partner.

Study design and patient recruitment

We conducted an observational, cross-sectional study evaluating the socioeconomic burden of patients with PAH using surveys distributed by our national patient advocacy organization from August 15, 2023 to October 9, 2023. Symptomatic, adult patients (aged ≥ 18 years) residing in Canada who had self-reported group 1 PAH confirmed by right heart catheterization and reported receiving at least one PAH-approved drug were eligible for inclusion. Patients with self-reported pulmonary hypertension (PH) associated with group 2-5 disease were excluded from the study. Recruitment was facilitated through the national patient advocacy organization via electronic and print newsletters, e-mails, and direct mail. Surveys were available to patients in both French and English, and the authors confirm that patient consent forms were obtained for this article electronically prior to survey completion.

Data collection and outcomes

Patients completed a self-administered survey hosted on a secure online platform. The questionnaire included general demographic and clinical data, along with key patient- and caregiver-related variables relevant to understanding workplace-related limitations. The primary outcome was the degree of workplace- and activity-related limitation, measured using the Work Productivity and Activity Impairment (WPAI) questionnaire,10 a validated 6-item tool that quantifies absenteeism, presenteeism (impairment while working, due to PAH), and overall activity impairment attributable to a health condition such as PAH.

Secondary outcomes included health-related quality of life via the EuroQol 5-Dimension (EQ-5D) Visual Analogue Scale (VAS), which assesses overall health status on a scale of 0 (worst imaginable health state) to 100 (best imaginable health state). Additional variables, including changes in work patterns and predictors of employment in this population, also were explored. Finally, caregiver metrics were recorded, including the presence, number, and role of caregivers, as well as the weekly hours of support required and the number of potential work hours lost by caregivers.

At the point of data collection, all survey data were anonymous, encrypted, and securely stored on password-protected servers at the affiliated academic research institution.

Statistical analysis

The target sample size for the survey was 200 patients, to effectively represent the Canadian PAH population, although no formal power calculations were performed. Baseline characteristics of participants were summarized across New York Heart Association (NYHA) functional class (FC) and were presented as number (N) and relative frequencies (%) for categorical variables, and as mean ± standard deviation (SD) or median (interquartile range [IQR] 25%-75%) for continuous variables, depending on normality. Comparisons of changes in work patterns due to PAH, and overall impact on career of both participants and their caregivers, between groups that include sex (male vs female), age group (< 65 vs ≥ 65 years) or NYHA FC (I/II vs III/IV) were performed using Kruskal–Wallis tests for non-normally distributed continuous variables, and χ2 tests (or Fisher’s exact test as appropriate) for categorical variables. Similar methods were applied to assess differences between groups in health-related quality of life as measured by the EQ-5D VAS score. Independent predictors of employment among selected candidate variables that include age (per 5 years), sex, relationship status (living together vs single/living separately), NYHA FC, race (White vs non-White), education level, PAH therapies (mono, dual, triple, or no therapy), parenteral therapy (yes/no), receiving help with daily activities, and time since PAH diagnosis were identified using step-wise logistic regression modelling with significance levels of entry and stay both set at 0.2. Data from univariable and the multivariable model fits were presented as odds ratios (ORs) with 95% confidence interval (CI). Missing data were excluded from denominators and were not imputed. A 2-sided test with a P-value < 0.05 was considered significant; no multiple testing corrections were applied. All statistical analyses were performed using SAS version 9.4 (SAS Institute, Cary, NC).

Results

Study population

A total of 217 patients met the inclusion criteria for study participation (Fig. 1). Most patients were female (84%) and identified as White (84%), with a median age of 60 years (IQR 46, 68). Eighteen patients (8%) self-reported as NYHA FC I, 109 (50%) as FC II, 73 (34%) as FC III, and 17 (8%) as FC IV. The median time from diagnosis of PAH to survey completion was 7 years (IQR 4, 14). A total of 142 patients (67%) had either a college degree or a higher level of education. Demographic data can be found in Table 1.

Figure 1.

Figure 1

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Participant accountability chart. EQ5D-VAS, EuroQol 5 dimensions visual analogue scale. PAH, pulmonary arterial hypertension.

Table 1.

Participant characteristics according to New York Heart Association (NYHA) functional class

Characteristic NYHA functional class
I (N = 18) II (N = 109) III (N = 73) IV (N = 17) Total (N = 217)
Age, Y
 Median (IQR) 64 (41, 68) 60 (45, 68) 60 (51, 68) 51 (39, 60) 60 (46, 68)
Female 16 (88.9) 91 (83.5) 62 (84.9) 13 (76.5) 182 (83.9)
Residence type
 Rural (< 10,000) 6 (35.3) 33 (30.6) 18 (24.7) 4 (23.5) 61 (28.4)
 Urban (≥ 10,000) 11 (64.7) 75 (69.4) 55 (75.3) 13 (76.5) 154 (71.6)
Race or ethnic group
 South Asian (East Indian, Pakistani, Sri Lankan) 0 (0.0) 5 (4.6) 4 (5.5) 0 (0.0) 9 (4.1)
 East and Southeast Asian 0 (0.0) 3 (2.8) 1 (1.4) 2 (11.8) 6 (2.8)
 West Asian and other 0 (0.0) 4 (3.7) 2 (2.7) 3 (17.6) 9 (4.1)
 White or Caucasian 15 (83.3) 95 (87.2) 61 (83.6) 11 (64.7) 182 (83.9)
 Indigenous 1 (5.6) 3 (2.8) 5 (6.8) 1 (5.9) 10 (4.6)
 Black 0 (0.0) 1 (0.9) 0 (0.0) 0 (0.0) 1 (0.5)
 Latin American 2 (11.1) 1 (0.9) 0 (0.0) 3 (17.6) 6 (2.8)
Education level
 High school or lower 3 (16.7) 37 (34.9) 24 (32.9) 7 (43.8) 71 (33.3)
 College or trade school 5 (27.8) 36 (34.0) 34 (46.6) 3 (18.8) 78 (36.6)
 University degree or higher 10 (55.6) 33 (31.1) 15 (20.5) 6 (37.5) 64 (30.0)
Job status
 Work full-time 7 (38.9) 27 (24.8) 6 (8.2) 3 (17.6) 43 (19.8)
 Work full-time, but on long-term disability 0 (0.0) 6 (5.5) 3 (4.1) 0 (0.0) 9 (4.1)
 Work part-time 1 (5.6) 6 (5.5) 6 (8.2) 1 (5.9) 14 (6.5)
 Homemaker (no outside employment) 0 (0.0) 1 (0.9) 0 (0.0) 1 (5.9) 2 (0.9)
 Student 0 (0.0) 3 (2.8) 1 (1.4) 0 (0.0) 4 (1.8)
 Unemployed 0 (0.0) 2 (1.8) 7 (9.6) 0 (0.0) 9 (4.1)
 Retired 10 (55.6) 44 (40.4) 24 (32.9) 2 (11.8) 80 (36.9)
 Disabled 0 (0.0) 16 (14.7) 22 (30.1) 9 (52.9) 47 (21.7)
 Other 0 (0.0) 4 (3.7) 1 (1.4) 0 (0.0) 5 (2.3)
 Prefer not to say 0 (0.0) 0 (0.0) 3 (4.1) 1 (5.9) 4 (1.8)
Drug insurance coverage
 Public 4 (22.2) 32 (29.4) 29 (39.7) 7 (41.2) 72 (33.2)
 Private 3 (16.7) 31 (28.4) 12 (16.4) 3 (17.6) 49 (22.6)
 Public and private 11 (61.1) 34 (31.2) 18 (24.7) 2 (11.8) 65 (30.0)
 No insurance 0 (0.0) 12 (11.0) 9 (12.3) 5 (29.4) 26 (12.0)
 Prefer not to answer 0 (0.0) 0 (0.0) 5 (6.8) 0 (0.0) 5 (2.3)
Background PAH therapy
 None 6 (33.3) 13 (11.9) 7 (9.6) 3 (17.6) 29 (13.4)
 Mono 2 (11.1) 21 (19.3) 7 (9.6) 0 (0.0) 30 (13.8)
 Dual 3 (16.7) 47 (43.1) 20 (27.4) 7 (41.2) 77 (35.5)
 Triple 7 (38.9) 28 (25.7) 39 (53.4) 7 (41.2) 81 (37.3)
Relationship status
 Single 1 (5.6) 32 (29.4) 19 (26.0) 5 (29.4) 57 (26.3)
 In a relationship, living together 15 (83.3) 74 (67.9) 51 (69.9) 9 (52.9) 149 (68.7)
 In a relationship, living separately 2 (11.1) 2 (1.8) 1 (1.4) 1 (5.9) 6 (2.8)
 Prefer not to answer 0 (0.0) 1 (0.9) 2 (2.7) 2 (11.8) 5 (2.3)
BMI, kg/m2, valid n 18 106 70 15 209
 Median (IQR) 24 (22, 27) 26 (22, 31) 29 (24, 36) 25 (23, 27) 26 (23, 32)
Time from PAH diagnosis, Y, valid n 18 108 73 17 216
 Median (IQR) 7 (3, 14) 8 (4, 16) 6 (4, 12) 8 (2, 12) 7 (4, 14)
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Values are n (%), unless otherwise indicated.

BMI, body mass index;.IQR, interquartile range; PAH, pulmonary arterial hypertension;.

Workplace- and activity-related limitations

Sixty-one patients (28%) were employed. Of the 156 nonworking participants, 80 (51%) were retired and 47 (30%) reported being disabled. Applying WPAI outcomes to working patients (Table 2), the median percentage of work missed due to PAH was 0% (IQR 0%, 21%), indicating that 25% of patients missed > 21% of work. Impairment while working due to PAH was 50% (IQR 10%, 70%), overall work impairment due to PAH was 50% (IQR 20%, 72%), and the activity impairment due to PAH was 60% (IQR 40%, 80%). As a result of PAH, 61% of patients decreased their hours at work, with 45% converting from full-time to part-time work (Table 3). Changes in work patterns between male and female participants were not significantly different. The frequency of reported changes in work patterns by self-reported NYHA FC is shown in Figure 2.

Table 2.

Summary of the work productivity and activity impairment (WPAI) questionnaire

Item Total (N = 217)
Hours missed due to PAH, valid n 62
 Median (IQR) 0 (0, 8)
WPAI outcome 1: work missed due to PAH, %, valid n 56
 Median (IQR) 0 (0, 21)
Hours missed due to any other reason, such as vacation, holidays, etc., valid n 62
 Median (IQR) 0 (0, 4)
Actual worked hours, valid n 61
 Median (IQR) 30 (15, 40)
Impact of PAH on productivity while working during past 7 days,∗ valid n 55
 Median (IQR) 5 (1, 7)
WPAI outcome 2: impairment while working due to PAH, %, valid n 55
 Median (IQR) 50 (10, 70)
WPAI outcome 3: overall work impairment due to PAH, %, valid n 55
 Median (IQR) 50 (20, 72)
Impact of PAH on ability to undertake regular daily activities during the past 7 days,† valid n 209
 Median (IQR) 6 (4, 8)
WPAI outcome 4: activity impairment due to PAH, %, valid n 209
 Median (IQR) 60 (40, 80)
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WPAI:SHP outcomes (1-4) are expressed as impairment percentages, with higher numbers indicating greater impairment and less productivity (ie, worse outcomes), as follows:.

1: percent work time missed due to pulmonary arterial hypertension (PAH): [Q2/(Q2+Q4)]∗100%;.

2: percent impairment while working due to PAH: [Q5/10]∗100%;.

3: percent overall work impairment due to PAH: [Q2/(Q2+Q4)+[(1-(Q2/(Q2+Q4)))x(Q5/10)]]∗100%;.

4: percent activity impairment due to PAH: [Q6/10]∗100%.

SHP, specific health outcome; Q, question.

∗

Slider: 0—PAH had no effect on work to 10—PAH completely prevented work.

†

Slider: 0 —PAH had no effect on daily activities to 10—PAH completely prevented daily activities.

Table 3.

Changes in work patterns due to pulmonary arterial hypertension (PAH) according to sex

As a result of PAH Total n/N (%) Male n/N (%) Female n/N (%) P
Seriously considered lowering one’s hours at work 76 of 122 (62.3) 13 of 20 (65.0) 63 of 102 (61.8) 0.785
Lowered hours at work 87 of 142 (61.3) 13 of 20 (65.0) 74 of 122 (60.7) 0.712
Considered quitting one’s job 63 of 131 (48.1) 11 of 21 (52.4) 52 of 110 (47.3) 0.668
Taken early retirement 61 of 132 (46.2) 8 of 18 (44.4) 53 of 114 (46.5) 0.871
Voluntarily stopped (quit) working at one’s job 65 of 145 (44.8) 10 of 22 (45.5) 55 of 123 (44.7) 0.949
Changed from full-time to part-time work 61 of 137 (44.5) 10 of 20 (50.0) 51 of 117 (43.6) 0.594
Received financial support from the government 71 of 165 (43.0) 14 of 25 (56.0) 57 of 140 (40.7) 0.155
Turned down a promotion 34 of 129 (26.4) 6 of 21 (28.6) 28 of 108 (25.9) 0.801
Been let go or laid off from one’s job 18 of 135 (13.3) 6 of 23 (26.1) 12 of 112 (10.7) 0.084
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Figure 2.

Figure 2

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Reported changes in work patterns by New York Heart Association (NYHA) functional class.

Detailed work productivity and activity-related impairment data are available stratified by self-reported NYHA FC (Supplemental Table S1) and sex (Supplemental Table S2). Additional analyses of career-related impacts in patients with PAH demonstrated similar limitations in career progression, job retention, and job-seeking between male and female participants (Supplemental Table S3); however, male patients more frequently reported being rejected at job interviews compared to female patients (64% vs 32%, P = 0.0217).

Predictors of employment

In multivariable logistic regression analysis identifying independent predictors of employment, older age (OR 0.62, 95% CI 0.54-0.72, P < 0.001), higher FC (III-IV compared to I-II; OR 0.38, 95% CI 0.17-0.82, P = 0.014), increased time from PAH diagnosis (OR 0.72, 95% CI 0.54-0.95, P = 0.022), and use of parenteral prostanoids (OR 0.30, 95% CI 0.09-1.00, P = 0.050) were associated with lower odds of employment, whereas being in a living-together relationship (OR 3.58, 95% CI 1.40-9.17, P = 0.008) was associated with higher odds of employment (Fig. 3).

Figure 3.

Figure 3

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Factors associated with employment in participants with pulmonary arterial hypertension. CI, confidence interval; IQR, interquartile range; OR, odds ratio.

Health-related quality of life

Health-related quality of life on the EQ-5D VAS decreased with worsening NYHA FC (Fig. 4): median values were 82 (IQR 77, 90), 68 (IQR 50, 80), 50 (IQR 40, 65), and 34 (IQR 25, 50) for FC I to IV, respectively (P < 0.001). Conversely, EQ-5D VAS scores were similar across age groups and by sex (Supplemental Fig. S1).

Figure 4.

Figure 4

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Distribution of EuroQol 5 dimensions visual analogue scale (EQ-5D VAS) by New York Heart Association (NYHA) functional class. IQR, interquartile range; Max, maximum; Min, minimum; SD, standard deviation.

Caregiver burden

Ninety-two patients (45%) reported that caregiver assistance was required for daily activities, the majority of which were partner caregivers (77%; Supplemental Table S4). The need for caregiver assistance significantly increased as the self-reported NYHA FC worsened, with 61% of patients in FC III or IV requiring caregiver support, compared to 33% of patients in FC I or II (P < 0.0001). For patients requiring caregiver assistance, the median total hours of help per week was 15 (IQR 6, 35), with a median of 25 hours (IQR 6, 45) among patients in FC III or IV, and 12 hours (IQR 5, 21) in patients in FC I or II (P = 0.055). Among partner caregivers specifically, worse FC was associated with a significant increase in caregiving hours: 21 hours (IQR 6, 40) for patients in FC III or IV, compared to 10 hours (IQR 3, 20) for patients in FC I or II (P = 0.008).

Caregivers lost a median of 4 hours (IQR 0, 10) of potential work per week caring for patients with PAH, with caregivers of patients in FC III or IV losing a median of 5 hours (IQR 0, 15), and caregivers of patients in FC I or II losing a median of 1 hour (IQR 0, 8). The detailed impact of PAH on caregiver work patterns is shown in Supplemental Table S5.

Discussion

In this Canadian, cross-sectional, survey-based study of adults living with PAH, a substantial socioeconomic burden was observed among both patients and their caregivers. Patients of working age with PAH were frequently not employed, and those who were employed reported substantial presenteeism and impairment in work- and activity-related productivity, despite low absenteeism. In addition, employed patients with PAH often required substantial changes in work patterns, with the extent of work-related limitations correlating with worsening disease severity. Predictors of employment in our study included younger age, lower FC, absence of parenteral prostanoid therapy, shorter time since PAH diagnosis, and being in a living-together relationship. Caregivers of patients with PAH—typically spouses—contributed a substantial number of caregiving hours and experienced a loss in potential work hours, with greater losses seen when caring for patients with worse disease severity.

Gainful employment has been associated with protective health effects in the literature, including improved general mental health and reduced rates of depression,11 as well as possible improvements in cardiovascular risk.5,12 The loss of employment and work productivity across various chronic cardiac and pulmonary diseases has been well documented, particularly for conditions such as heart failure,13,14 coronary artery disease,15, 16, 17, 18 and chronic obstructive pulmonary disease.19, 20, 21, 22, 23 Although significant differences are present in the lived experiences of patients with these diseases and patients with PAH—especially in terms of demographics, treatment options, and disease progression—they have notable similarities in work-related limitations. For example, one-third of working patients who experience a heart failure exacerbation do not return to work by 1 year, with predictors of returning to work including younger age, male sex, higher education level, lower disease activity, and fewer comorbidities.13,14 These same risk factors influenced return to work at 1 year following acute myocardial infarction.16, 17, 18 These findings align with those of our study, in which younger age and lower disease severity—reflected by lower FC and the absence of parenteral prostanoids—were associated with employment in patients with PAH.

Although recognition of the importance of patient-related outcome measures in PAH has been growing,24 the literature exploring employment and workplace productivity remains limited. The suggestion has been made that the socioeconomic costs to patients with PAH start years prior to diagnosis, typically beginning with a reduction in work productivity rather than nonemployment.4 As the disease progresses, up to 85% of working-age patients report that their employment or work productivity is affected by PAH.25 Recently, a multicentre, cross-sectional, survey-based study from Germany evaluated employment and work productivity in 212 patients, employing outcomes similar to those in our study, including the WPAI.26 The authors found that 48% of patients were employed at the time of PAH diagnosis, which dropped significantly to 29% by the time of survey administration approximately 6 years later, demonstrating an association between employment and disease duration. Younger age, lower FC, higher 6-minute walk distance (6MWD), higher education level, lower European Society of Cardiology/European Respiratory Society risk score, and higher EQ-5D-3L scores were also associated with employment, with 6MWD and higher education level being significant in multivariable analysis. Similarly, in our study, predictors of employment included younger age, lower FC, shorter disease duration, and absence of parenteral prostanoid therapy. Although education level has been shown in multiple studies to predict employment,13, 14, 15, 16,27, 28, 29 a nonsignificant study trend toward higher education was present in our study, likely related to heterogeneous definitions between studies. Together, these studies support the notion that patients with PAH who are older, have longer disease duration, worse disease severity, increased symptom burden, and less education may represent a population more susceptible to nonemployment or a loss of workplace productivity.

In our study, being in a living-together relationship was significantly associated with increased employment. This association may be partially related to the general presence of social support, whereby positive attitudes of supportive individuals toward employment have been associated with higher rates of work participation in patients with chronic diseases.30,31 However, the importance of cohabitation on employment, return-to-work, and overall functionality has also been described in the literature for other chronic conditions.32,33 In addition, patients living alone with chronic disease may experience increased depressive symptoms and mental health challenges, which together have been shown to significantly reduce workplace productivity.34 These findings highlight the deleterious interplay among social isolation, mental health, and work-related limitations in chronic diseases such as PAH.

Caregivers spent a substantial amount of time caring for patients, with caregiving hours increasing proportionally to the degree of patient disability. In the literature, the social, emotional, and physical toll attributable to caring for patients with PAH is well-documented,9,25,35,36 but the effect on employment and work productivity is less well understood. Evidence from other chronic diseases suggests that spouses of patients commonly experience a significant reduction in weekly hours of work,37, 38, 39 with families of lower socioeconomic status frequently being impacted more.39 In one study evaluating caregivers of those with PAH, 29% reported work-related limitations related to caring for someone with PAH.25 Similarly, 45% of patients in our study described requiring caregiver assistance, and they estimated that caregivers lost 4 hours per week of potential work, the burden of which increased with disease severity. In contrast, caregivers were perceived to spend a median of 15 hours per week caring for patients, suggesting that a considerable portion of caregiving occurs outside of formal work hours. Although our study assessed only patients’ perceptions of caregiver-related work limitations, it adds to the growing body of evidence suggesting that caregivers of individuals with PAH experience an underappreciated loss in work productivity.

Our study offers valuable insights into the real-world perceived socioeconomic barriers experienced by Canadian patients with PAH, incorporating validated multicomponent tools such as the WPAI questionnaire. By including data related to the work-related effects of caregivers, this study expands the scope of socioeconomic impact related to PAH beyond patients alone. However, several limitations of our study must be acknowledged. The sample size was modest—particularly among employed participants—and the findings are mostly descriptive in nature. The voluntary survey design introduces potential selection bias, possibly underrepresenting patients not engaged with the national patient advocacy organization. Additionally, reliance on self-reported data is also subject to recall, response, and misclassification biases, including potential overrepresentation of individuals with milder or more stable disease, as well as the use of markers of disease severity such as NYHA FC in the absence of objective metrics (eg, 6MWD). Although demographic comparisons to registry populations were similar,40, 41, 42 our cohort consisted primarily of prevalent patients with longer disease duration and a higher proportion of NYHA FC I-II symptoms. These characteristics may limit generalizability and underestimate the impact of PAH on work-related limitations, as incident patients and patients with more severe disease would likely experience greater socioeconomic burden.43 Finally, as the survey was conducted in 2023, work-related changes due to the COVID-19 pandemic—including remote or flexible work arrangements—may have influenced outcomes and were not directly assessed.

Conclusions

In this cross-sectional, survey-based study, we found a significant socioeconomic burden associated with PAH in the form of work- and activity-related limitations. The substantial loss of employment, work productivity, and quality of life, coupled with increasing reliance on caregivers as disease severity worsens, highlights the need for broader support strategies for patients with PAH. To improve the lived experiences of these patients, comprehensive care models addressing the socioeconomic consequences of PAH must include routine assessments of employment and work productivity, particularly for patients and caregivers most vulnerable to experiencing socioeconomic hardships.

Ethics Statement

The research reported in this paper adhered to the CROSS guidelines for survey studies. Ethics approval was obtained from the appropriate institutional research ethics board. The institutional review board was the University of Alberta Research Ethics Board (Pro00130718).

Patient Consent

The authors confirm that patient consent forms have been obtained for this article.

Funding Sources

This research was conducted in a joint collaboration between the Pulmonary Hypertension Association (PHA) Canada, Canadian VIGOUR Centre, and Merck Canada Inc., Kirkland, Quebec, Canada, and was financially supported by Merck Canada Inc., Kirkland, Quebec, Canada.

Disclosures

J.M. reports receiving support for the present article from Merck (payments made to the Pulmonary Hypertension Association [PHA] Canada [employer]); receiving grants/contracts from Bayer, Gossamer Bio, JAMP, J&J Innovative Medicines, McKesson, Shoppers, SRx Specialty Health, and United Therapeutics (payments made to PHA Canada [employer]); receiving consulting fees from Gossamer Bio, J&J Global/Actelion, and Merck/MSD (payments made to PHA Canada [employer]); receiving travel support from Gossamer Bio and Merck/MSD; and serving in leadership/fiduciary roles as a paid employee of the Pulmonary Hypertension Association of Canada and as an unpaid board member of the Medicines Access Coalition of British Columbia.

C.M.W. reports receiving consultant fees from Bayer Canada.

E.B. and T.A. report being employed by Merck Canada Inc., Kirkland, Quebec, Canada.

J.W. reports receiving support for the present article from Merck (made to institution); receiving grants from Janssen, 35Pharma, Merck, Astra Zeneca, and Sanofi (made to institution); receiving consulting fees from Janssen, Merck, and Apollo Therapeutics; receiving honoraria from Janssen and Merck; receiving payment for expert testimony from Sprigings Intellectual Property Law; receiving travel support from Janssen and Merck; serving on an advisory board for Janssen and Merck; and serving in unpaid roles in the Pulmonary Hypertension Association of Canada and the Pulmonary Vascular Research Institute. The other authors have no conflicts of interest to disclose.

Footnotes

See page 1049 for disclosure information.

To access the supplementary material accompanying this article, visit CJC Open at https://www.cjcopen.ca/ and at https://doi.org/10.1016/j.cjco.2026.04.001

Supplementary Material

Supplementary Material
mmc1.docx (161.3KB, docx)

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