Psychosocial and Financial Burden of Therapy in USA Patients with Pulmonary Arterial Hypertension

Abstract

Abstract: Pulmonary arterial hypertension (PAH) is a devastating disease with significant morbidity and mortality. There are many psychosocial and financial implications of this disease; however, little is known how this affects the treatment of PAH patients. A questionnaire-based prospective cohort study was performed on 106 PAH patients from a Pulmonary Hypertension Center and the Pulmonary Hypertension Association national conference in 2018. The demographic, treatment, psychosocial, employment, financial impact on treatment data was obtained. The majority of patients had cardiopulmonary symptoms despite treatment. The symptoms affected their social and work lives, with about one in three applying for disability because of their PAH. The majority of PAH patients had insurance coverage, but still noted a significant financial burden of the disease, with nearly a half who needed financial assistance to pay for their PAH medications. Thirty (28.3%; 95% CI, 20.6-37.5%) patients mentioned they changed their medication regimen, with some skipping doses outright (28 [26.4%; 95% CI, 19-35.6%]) in order to save money. PAH continues to cause significant psychosocial and financial burden on patients despite advances in medications. This impact ranged from dissatisfaction with quality of life, to unemployment, to altering their medication regimen to save money.

Keywords: financial; psychosocial; pulmonary hypertension; treatment.

Figure 1

This figure displays the entire cohort’s satisfaction with their current level of social activity, displayed with 95% confidence intervals. This figure shows that despite treatment more than half of the patients were only somewhat satisfied or worse with their social life.

Figure 2

This figure displays how much the entire cohort’s current health status limits them in performing 2 h of physical activity, displayed with 95% confidence intervals. This figure shows that nearly two out of three patients present some or worse limitations when performing 2 h of physical activity.

Figure 3

This figure shows the entire cohort’s insurance coverage at time of diagnosis (patients with double coverage = 25 [23.6%]), displayed with 95% confidence intervals. This figure shows that nearly all the patients had insurance patients, with the most common coverage type being private insurance.

Figure 4

This figure shows the entire cohort’s difficulties with therapy compliance due to a financial burden, displayed with 95% confidence intervals. This shows that many of the patients attempted many cost-coping strategies.

Figure 5

This figure shows the types of external financial assistance (n = 49 [46.2%]), displayed with 95% confidence intervals. Nonprofit organizations and pharmaceutical assistance helped support nearly all the patients who required external financial assistance.