Women with PAH report struggles with family planning, caregiver needs

Key takeaways:

• At the time of PAH diagnosis, 89% of women reported that they were advised about risks related to pregnancy.
• Close to two-thirds of women reported their spouse as their caregiver.

SAN FRANCISCO — Many women with pulmonary arterial hypertension report feeling grief related to being unable to become pregnant/have biological children, according to data presented at the American Thoracic Society International Conference.

Additionally, spouses and parents are the most commonly reported caregivers of women with PAH of childbearing and childrearing age, according to researchers.

These findings were derived from one survey and presented as two posters.

“The findings of the studies are significant in that they identify and describe the impact of having PAH in important ways distinct from traditional medical outcomes for patients and their families,” Anjali Vaidya, MD, FACC, FASE, FACP, co-author on this study, director of the pulmonary hypertension fellowship and co-director of the advanced pulmonary hypertension, right heart failure and chronic thromboembolic pulmonary hypertension program at Temple University Hospital, told Healio.

“This includes the emotional impact related to grief of coping with a progressive, life-threatening form of heart failure, as well as the grief associated with the impact on childbearing potential and family planning,” Vaidya said.

Using data from a 45-minute survey, Vaidya and colleagues assessed responses from 275 women with PAH of childbearing and childrearing age (21 to 50 years) from four countries to learn more about interactions they had with health care professionals (HCPs), the emotional and financial impact of this diagnosis, what sources they use for information on pregnancy risks related to PAH and the support they receive from informal caregiver networks.

Within this population, 120 women were from the U.S., 55 were from the U.K., 50 were from Canada and 50 were from Germany. The average age of the included women differed at PAH symptom onset (33.1 years), diagnosis (34.6 years) and time of the survey (40.1 years).

Researchers found that nearly half (48%) of women had children aged 17 years or younger, with most (90%) being biological children.

Impact of disease, HCP interactions

At the time of diagnosis, 89% of women reported that they were advised about risks related to pregnancy, according to the poster. Among women without children who were advised against pregnancy by their HCP, nearly two-thirds (65%) felt grief regarding not being able to have biological children. Further, most women in the studied population (98%) reported moderate to extreme grief related to being unable to become pregnant or have biological children.

In terms of finances, researchers observed that the financial burden of PAH was moderate or very high for 43% of women.

When asked about their interactions with HCPs, some women reported dismissive attitudes. According to the poster, 20% perceived having an HCP that was dismissive of symptoms due to gender, and 17% perceived an experience with an HCP that was dismissive due to lifestyle factors.

Of the surveyed women, 18% reported inadequate awareness of PAH from their HCP. Researchers also found that 12% perceived that male providers did not relate to their pregnancy-related grief.

The top three sources women reported using to find information on pregnancy risks related to PAH included internet searches (51%), social media groups (46%) and resources from a HCP (44%). Fewer women reported use of scientific literature (38%) and patient advocacy groups (20%) for this purpose.

“While some patients find resources from online support groups, social media and other internet-based searches, clinicians can learn from these data to increase their awareness of the psychosocial and emotional impacts our patients are navigating,” Vaidya told Healio.

Caregivers

When evaluating responses related to caregiving, researchers found that close to two-thirds of women (64%) reported their spouse as their caregiver and 45% reported their parents. The third most reported type of caregiver was tied between relatives and friends (both 32%), and smaller percentages of women reported their children, therapist, professional caregivers and colleagues as their caregiver.

The poster also highlighted the types of support women with PAH received from their spouses, parents and relatives. Frequent ways spouses showed their support included cheering (56%), financial support (55%), checking in on feelings (54%), household duties (52%) and taking care of the elderly (49%).

The top three types of support women with PAH received from their parents were checking in (47%), expressing concern (39%) and boosting patient morale (38%). On the relative side, researchers found that women with PAH reported these actions less.

Divided by country, a higher proportion of women in the U.S. vs. European Union/Canada reported that they needed support from their parents with household duties (88% vs. 66%) and caring for children (82% vs. 66%) in the past month. In contrast, more women in the E.U./Canada needed support with finances from their parents (90% vs. 72%).

“[Women with PAH] report significant needs for financial support and assistance with maintaining household tasks due to the extended impact of living with PAH,” Vaidya told Healio.

For support needed from spouses, researchers observed similar proportion of women with PAH in the U.S. and European Union/Canada reporting that they needed help with caring for parents and children (both 7%), household duties (4% vs. 5%) and finances (both 4%) in the past month.

“This research helps inform the need for improved compassionate care from clinicians and supports the integration of additional resources within pulmonary hypertension centers such as clinical social work and case management,” Vaidya told Healio.

“More data are required to further this work, looking at widespread impact in additional centers, but the studies suggest the imminent need for overall improvement in resources within the health care systems for PAH patients’ comprehensive care,” Vaidya said.

Reference:

• Thakur T, et al. Caregiver network and caregiving needs in women with pulmonary arterial hypertension (PAH). Presented at: American Thoracic Society International Conference; May 16-21, 2025; San Francisco.

For more information:

Anjali Vaidya, MD, FACC, FASE, FACP, can be reached at pulmonology@healio.com.