Quantifying the burden of pulmonary arterial hypertension on patients’ need for caregivers and caregiver work patterns: Results from a Canadian patient survey
Bibliographic record
Abstract
Introduction: Patients with pulmonary arterial hypertension (PAH) frequently experience a decline in their functional capacity, necessitating support from others to complete daily activities. Our aim was to evaluate patients’ need for caregivers and the impact of supporting a patient with PAH on caregiver work productivity. Methods: We performed a cross-sectional study of symptomatic adult patients (≥18 years) with self-reported Group 1 PAH. A survey was distributed by the Pulmonary Hypertension Association of Canada from 15-08-2023 to 9-10-2023. Patients reported their need for caregivers, help with daily activities, and the estimated work productivity loss for each unpaid caregiver. Results: 217 patients met the inclusion criteria for participation. Most patients were female (84%) and White (84%) with a median age of 60 years (IQR 46, 68). The percentage of patients requiring caregiver assistance with daily activities increased as the self-reported New York Heart Association (NYHA) functional class (FC) worsened: the proportions were 11.8%, 36.5%, 56.9%, and 84.6% for FC I to IV, respectively. Similarly, caregivers lost a mean of 6, 7, 10, and 16 hours worked per week supporting patients with FC I to IV symptoms, respectively. In approximately half of the patients, spouses/partners assumed the role of caregiver, experiencing an average loss of 8 hours worked per week. Conclusion: PAH has a significant impact on the lives of patient caregivers. As the severity of PAH worsens, patients become increasingly reliant on caregiver support and caregivers experience greater losses in work productivity.
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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 | 0.002 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.004 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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".