Women with pulmonary arterial hypertension report a high humanistic and clinical burden of disease
Presenter: Vallerie V. McLaughlin, MD, Director, Pulmonary Hypertension Program, University of Michigan Medical School, Ann Arbor, MI.
In an interim analysis of an ongoing observational study, women with pulmonary arterial hypertension (PAH) reported substantial clinical, emotional, psychological, and social impacts, as well as a high economic burden related to the disease.
Women with pulmonary arterial hypertension (PAH) experience unique clinical, emotional, psychological, and social impacts, particularly with regard to family planning, according to authors of an ongoing observational study.
Economic burdens were also substantial for women in the study due to care costs, limits on productivity, and additional expenses due to childcare, the authors reported at CHEST 2024.
“Pulmonary arterial hypertension, a rare [form] of pulmonary hypertension, has a disproportionate impact on women,” wrote investigator Vallerie V. McLaughlin, MD, and co-authors in a published abstract for the study.
The study by McLaughlin and colleagues provides further insights on the impact of PAH in women, who are known to be more susceptible to the disease than men. In published registry studies, the condition is 1.4 to 4.1 times more prevalent in women. [1]
The aim of the present study, according to the authors, is to assess women’s experience of living with PAH and the burden on their lives.
The ongoing, observational, qualitative study includes women from the United States, Canada, the United Kingdom, and Germany between the ages of 21 to 50 with self-reported PAH.
At CHEST 2024, the researchers presented an interim analysis of the observational study that included 16 women with PAH who discussed the clinical and humanistic burden of PAH.
Thirteen of the women participated in 60-minute interviews, including 5 from the United States, 3 from the United Kingdom, 2 from Canada, and 3 from Germany. Three women in the US participated in a 90-minute focus group.
Family planning, pregnancy, caregiving, and general economic impact were key themes in the interviews and focus groups, the authors said in their study abstract.
The interviews and focus groups utilized structured questions and probes to allow participants to elaborate on responses.
The women ranged in age from 24 to 49 years, with an average age of about 42 years. Seven of the 16 women had children.
Clinical burdens reported by women in the study included frequent pregnancy complications attributed to PAH, the authors said. Three women delivered prematurely, 2 required cesarean sections, and 1 reported loss of pregnancy.
The humanistic burden was also high, the authors said, especially in regard to maternity. Some women were concerned about the use of teratogenic medications used to treat PAH. Women without children expressed a desire for motherhood, even despite the mortality risks.
Some participants reported mental health impacts, including fear of birth complications, dying with a young child, and grief due to their inability to bear children.
Depression or loneliness were reported by nearly all the women (15 of 16 participants). Some reported social isolation or receiving therapy for mental health issues. Several said the unpredictability of PAH controls their lives, “leading to them having to reinvent themselves,” the authors noted in their study abstract.
Independently managing the household was a problem for 13 of the 16 women, while several reported difficulties with childcare. The disease also impacted family relationships, with 4 women saying PAH led to relationship struggles, and 2 said their partners were worried about disease progression.
The economic burden was significant for some women, the authors said, primarily due to the high cost of care and decreased work productivity. Three women cited high out-of-pocket payments for medications from specialty pharmacies, while 2 indicated a lack of insurance coverage. Job insecurity due to PAH was reported by 5 of the 16 women, and 5 reported job changes due to the disease.
Taken together, these findings illustrate the “nature of the increased clinical and humanistic burden of disease that women with PAH experience, especially regarding family planning,” the authors said.
The overall economic burden was substantial as well, they concluded.
Disclosures:
Dr. McLaughlin reported current disclosures related to Keros, Gossamer-Bio, Janssen, Merck, Sonovie, Caremark, Corvista, United Therapeutics, 35Pharma, Riovant, and Aerami in the study abstract.
References:
- Rodriguez-Arias JJ, García-Álvarez A. Sex differences in pulmonary hypertension. Front Aging 2021; 2:727558. doi: 10.3389/fragi.2021.727558.