Sexual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study
Notice bibliographique
Résumé
Abstract Background: Sexual health in patients with hemophilia (PWH) is inadequately assessed in the routine care. A small survey study in 20 PWH demonstrated that joint stiffness affected their sexual life (53%), patients had joint pain from sexual activity (53%) and patients did not have adequate information regarding sexual activity (Tobase PM et al. Hemophilia 2017). The aim of this study was to evaluate the impact of hemophilia on sexual health in PWH. Methods: The PROBE is a 29-item questionnaire evaluating patient reported outcome in hemophilia. The rationale, development and feasibility of the PROBE was reported previously (Skinner M et al. 2016). We recruited PWH and participants without bleeding disorder in 6 countries. The sexual health was assessed using the question asking whether participants have difficulty with sexual intimacy (yes or no). The logistic regression analysis was used to assessed the association between clinical characteristics and sexual health. The overall health status (PROBE score) was assessed among patients with sexual health problem versus those without. Results: There were 807 respondents (475 had hemophilia A, 76 had hemophilia B and 256 people without bleeding disorder). Median age was 33 years in hemophilia group and 43 years in people without bleeding disorder. Seventy-six percent were male. There was significant greater proportion of people reported difficulty with sexual intimacy among PWH (14.3%) as compared to control (6.25%). Table 1 demonstrated the association between type and severity of hemophilia, bleeding history and joint status and difficulty in sexual intimacy. Patients who bled more than 10 times in the past year, who bled in the past two weeks, who had limit range of motion of any joints and life- or limb-threatening bleeding in the past year were significantly associated with difficulty in sexual intimacy. Multivariate logistic regression revealed that older age, >10 bleeds or life/limb-threatening bleeds in the past year were independent predictors for poor sexual health. Patients who reported difficulty in sexual intimacy has significantly higher total PROBE score, indicating worse general health status comparing to those who did not report (mean score (SD), 4.70 (0.22) vs 3.07 (0.09), P Conclusions: The prevalence of difficulty with sexual activity is significantly higher among PWH as compared to general population. Older age, joint bleeding and joint status are related to poor sexual health in PWH. In addition, poor sexual health is strongly associated with worse general health status. Sexual health should be assessed as a routine care in adult PWH. Download : Download high-res image (188KB) Download : Download full-size image Disclosures Skinner: Baxalta, now part of Shire; Bayer; Bioverativ; CSL; Novo Nordisk, Roche and Sobi with administrative support provided by the US National Hemophilia Foundation: Research Funding; Baxalta, now part of Shire; Bayer; Bioverativ; CSL; Novo Nordisk, Roche and Sobi with administrative support provided by the US National Hemophilia Foundation: Research Funding; US National Hemophilia Foundation: Other: non-financial support ; US National Hemophilia Foundation: Other: non-financial support . Curtis: Pfizer: Research Funding; Genentech: Honoraria, Research Funding; Baxter: Research Funding; Bayer: Research Funding, Speakers Bureau; Bioverativ: Research Funding; CSL Behring: Research Funding; Gilead: Honoraria; Novo Nordisk: Honoraria, Research Funding. Nichol: Bayer: Research Funding; CSL Behring: Research Funding; Baxter: Research Funding; Pfizer: Research Funding; Genentech: Research Funding; Merck: Consultancy; Bioverativ: Consultancy, Research Funding; Novo Nordisk: Research Funding. Noone: Baxalta, now part of Shire; Bayer; Bioverativ; CSL; Novo Nordisk, Roche and Sobi with administrative support provided by the US National Hemophilia Foundation: Research Funding. O'Mahony: US National Hemophilia Foundation: Other: non-financial support.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
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 | 0,002 | 0,004 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 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 ».