Perceptions, Attitudes and Behaviors Among Women of Childbearing and Childrearing Age With Pulmonary Arterial Hypertension
Bibliographic record
Abstract
Abstract RATIONALE: Women of childbearing and childrearing age may face additional challenges and burden in pregnancy and motherhood when diagnosed with a progressive disease, such as pulmonary arterial hypertension (PAH). This study sought to capture the unique perceptions, attitudes, and behaviors in women with PAH related to their disease. METHODS: This is a quantitative, multi-country survey evaluating the impact of PAH on women of childbearing and childrearing age (21-50 years). Respondents completed a survey comprised of de novo questions derived from prior qualitative interviews. Perceptions, attitudes, and behaviors were summarized descriptively. Ethics approval/exemption was obtained in all included countries. Interim results are reported for the United States (US), and United Kingdom (UK). Final analysis which includes ∼120 more patients from Canada, Germany, France, and Italy will be available for presentation at the conference. RESULTS: 150 patients were included in interim analysis (US: n=120; UK: n=30). Patients were an average of 41 years old. The mean time from symptom onset to diagnosis was 2.4 years. Perceptions and attitudes: Nearly 1/4th of patients felt that certain healthcare providers had been dismissive of their symptoms due to their sex (24%) and lifestyle factors (25%; e.g. obesity). Sixteen-percent of patients reported their male physician could not relate to their situation. Overall, 63% of patients were advised not to have children following their PAH diagnosis. Feelings of extreme grief about the inability to have children naturally were reported by 17% (score of 6 or 7; 1-7 scale, 1= Received extremely inadequate/ unhelpful information), where 1= Experienced absolutely no grief; 7=Experienced extreme grief). Forty three percent of patients noted a moderate /very high financial burden of PAH on their family due to out-of-pocket expenses associated with PAH diagnosis and treatment. Behaviors: Patients reported having to self-research about the disease which involved gathering information about their disease on the internet (45%), social media (45%) and/or via patient advocacy groups (32%). 37% received information/resources from their health care provider; among them 38% (score of 7; 1-7 scale, 1= Received extremely inadequate/unhelpful information, 7= Received extremely helpful/adequate information) considered that the provided information was extremely helpful. CONCLUSIONS: This study presents novel findings on the unique perceptions and behaviors of women with PAH especially around challenging interactions with healthcare system and mechanisms to address these challenges, including the risks of childbearing. These findings underscore the need for improved disease awareness, individualized patient-healthcare provider communication and treatment.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".