Perceptions, Attitudes and Behaviors Among Women of Childbearing and Childrearing Age With Pulmonary Arterial Hypertension
Notice bibliographique
Résumé
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.
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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,004 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,001 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».