Comparing the Burden of Pulmonary Arterial Hypertension (PAH) Among Women Across Regions: A Patient Survey
Bibliographic record
Abstract
Abstract RATIONALE: Women diagnosed with pulmonary arterial hypertension (PAH), a rare and progressive disease, face an increased burden related to childbearing and childrearing across different regions. The aim of this study was to assess variations in the burden of disease in women with PAH across countries. METHODS: Women with self-reported PAH aged 21-50 years completed a 45-minute quantitative survey on the holistic impact of PAH. The survey included validated patient-reported outcome scales (WPAI, SF12, EQ5D-5L) and de novo questions derived from prior qualitative interviews. Survey responses were analyzed descriptively and stratified by country (US and UK). Exemption/approval was obtained from ethics committees for both countries, as applicable. Final analysis which includes ∼120 more patients from Canada, Germany, France, and Italy will be available for presentation at the conference. RESULTS: Interim quantitative survey data were collected from 150 respondents in the US (n=120), UK (n=30). The humanistic burden of PAH was reported to be high. Across both countries, PAH was reported to have a profound impact on quality of life (US=34%, UK = 30%, rated 6 or higher on a 7-point Likert scale where 1 is ‘absolutely no impact’ and 7 is ‘severely impacted’). Fear of worsening of PAH was higher in the US (71%) than in the UK (47%) and grief experienced by patients due to PAH was similar across both countries (US=47%, UK=43%). Forty-three-percent patients in the US and 77% patients in UK were employed part or full time. Patients reported missing 5.6 hours (mean) of work across both countries in the past 7 days due to PAH. Patients reported missing more work in the UK (mean 8.2 hours of 26 hours worked) as compared to the US (mean 4.5 hours of 27.9 hours worked). Patients reported receiving government/employer-sponsored disability benefits in both the US (58%) and UK (73%). Higher 12-month out-of-pocket costs >$1000 USD (e.g., medications, visits) were reported in patients in the UK (97%) as compared to US (50%). CONCLUSIONS: Findings from this study confirm that PAH exerts a substantial burden on women across both countries even though the level of impact differed between countries. The burden of PAH spanned clinical, humanistic, and economic domains, regardless of country. Moving forward, a holistic management approach is needed to address the high overall disease burden, as well as the unique challenges faced by women with PAH globally.
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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 | 0.003 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.002 | 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".