Burden and Unmet Needs in Women with Pulmonary Arterial Hypertension: Multinational Physician Qualitative Study
<bold>OBJECTIVES:</bold> ESC/ERS guidelines recognize the need for specialized care around pregnancy in pulmonary arterial hypertension (PAH). This study explores physicians’ perceptions and recommendations for women’s health in PAH. <bold>METHODS:</bold> This is a multi-country, qualitative study of physicians providing medical care to adult women with PAH. Physicians participated in 1-hour qualitative interviews with structured and open-ended questions on perceived burden and management of PAH focusing on family planning, pregnancy, and childcare. <bold>RESULTS:</bold> In this study, 15 physicians (US=8, UK=4, Canada=3; 7 Cardiologist, 8 Pulmonologist) were interviewed. Clinical recommendations by all physicians aligned with guidelines. Overall, all physicians reported high socioeconomic burden especially poor quality of life and isolation/depression in women patients. High clinical unmet needs, especially lack of non-teratogenic and safe treatment was reported, particularly in pregnant women (N=15). See table for detailed results. <bold>CONCLUSIONS:</bold> Physicians report high burden and unmet need in women with PAH. This study highlights the continued need for specialized care for women with PAH with focus on family planning, pregnancy, and childcare. <table-wrap><object-id>erj;64/suppl_68/PA4307/T1</object-id><object-id>T1</object-id><object-id>t1</object-id><table><colgroup><col></col><col></col></colgroup><tbody><tr><td><bold>Category</bold></td><td><bold>Physician reported (N=15)</bold></td></tr><tr><td><italic>Socioeconomic burden, n</italic></td><td></td></tr><tr><td>Low quality of life</td><td>15</td></tr><tr><td>Depression/isolation</td><td>11</td></tr><tr><td>High medical costs</td><td>9</td></tr><tr><td>Employment difficulties</td><td>10</td></tr><tr><td>Negative impact on interpersonal relations</td><td>6</td></tr><tr><td><italic>Unmet need, n</italic></td><td></td></tr><tr><td>Treatment challenges</td><td>15</td></tr><tr><td>Delayed/misdiagnosis</td><td>10</td></tr><tr><td>No patient education resources</td><td>8</td></tr><tr><td><italic>Guideline concordance, n</italic></td><td></td></tr><tr><td>Advise against pregnancy</td><td>15</td></tr><tr><td>Treatment changes to avoid harm to fetus</td><td>15</td></tr><tr><td>Multidisciplinary approach</td><td>13</td></tr></tbody></table></table-wrap>
Authors
- Tanvee Thakur
- Ioana R. Preston (ORCID: https://orcid.org/0000-0002-1378-7362)
- A. Watzker (ORCID: https://orcid.org/0009-0003-8897-9339)
- Amod Athavale (ORCID: https://orcid.org/0000-0001-8808-5069)
- Matthew O’Hara (ORCID: https://orcid.org/0000-0003-2131-8563)
- Anjali Vaidya (ORCID: https://orcid.org/0000-0001-6513-4112)
- Marion Delcroix (ORCID: https://orcid.org/0000-0001-8394-9809)
- Dominik Lautsch (ORCID: https://orcid.org/0000-0003-3803-1817)
- Abigail Silber
- V.V. McLaughlin
Institutions
- Tufts Medical Center (US)
- University of Michigan (US)
- Merck Institute for Science Education (US)
- Ann Arbor Center for Independent Living (US)
- NeuroMetrix (United States) (US)
- Temple University (US)
- Philadelphia University (US)
- KU Leuven (BE)
Publication Details
- Published
- 2024-09-14
- DOI
- https://doi.org/10.1183/13993003.congress-2024.pa4307
- Primary Topic
- Pulmonary Hypertension Research and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 0.00