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Enregistrement W4385667600 · doi:10.1097/01.hs9.0000973232.36093.e7

P1589: PATIENT (PT) AND PHYSICIAN (MD) PERCEPTIONS OF THE BURDEN OF IMMUNE THROMBOCYTOPENIA (ITP) AND ITS MANAGEMENT: RESULTS FROM THE ITP WORLD IMPACT SURVEY (I-WISH) 2.0

2023· article· en· W4385667600 sur OpenAlexaff
Nichola Cooper, Caroline Kruse, Waleed Ghanima, Drew Provan, Yoshiaka Tomiyama, Ming Hou, Donald M. Arnold, Cristina Santoro, Francesco Zaja, Barbara Lovrenčič, Mervyn Morgan, Leron Lahav, Michal Winograd, Tom Bailey, Jens Haenig, Mahnouch Georget, James B. Bussel

Notice bibliographique

RevueHemaSphere · 2023
Typearticle
Langueen
DomaineMedicine
ThématiqueChronic Disease Management Strategies
Établissements canadiensMcMaster University
Organismes subventionnairesnon disponible
Mots-clésMedicineImmune thrombocytopeniaQuality of life (healthcare)WishPediatricsFamily medicineInternal medicinePlatelet

Résumé

récupéré en direct d'OpenAlex

Topic: 32. Platelet disorders Background: ITP, an autoimmune disease characterized by thrombocytopenia, negatively affects pts’ quality of life (QoL), including emotional wellbeing and daily activities. Studies have demonstrated this burden may be amplified by current ITP treatments. During the COVID-19 pandemic, ITP management was challenged, but it is unclear how strategies may evolve. The opportunity to discontinue treatments for pts with a stable response could reduce the burden of ITP management. Aims: To assess the burden of ITP, impact of ITP treatments and the effect of COVID-19 on management, using pt and MD data from the global I-WISh 2.0 survey. Methods: I-WISh 2.0 was developed based on previous findings from I-WISh 1.0 and surveyed pts >18 years of age with an ITP diagnosis and MDs who managed ≥3 pts with ITP. The survey was conducted from February to July 2022 in 15 countries. The surveys, developed by a steering committee (supported by Novartis) comprising expert ITP MDs and pt advocates, included questionnaires investigating pts’ QoL. Results: 1018 pts and 431 MDs completed I-WISh 2.0 (Table). 686 (67%) pts were female, median age was 46 years and 485 (48%) pts reported ≥1 comorbidity. 97% (n=956 of 987 pts that answered) had received ≥1 treatment for ITP and 811 (80%) pts were receiving ITP treatment at survey completion. 54% (554/1017) of pts reported a high impact of ITP on emotional wellbeing and 331 (77%) MDs reported a similar impact on their pts. Notably, the Patient Health Questionnaire-9 indicated that 58% (555/961) of pts were experiencing mild to severe depression. Only 16% (166/1016) were receiving professional support for emotional aspects of ITP, and MDs estimated that 19% of their pts received such support. 40% (348/863) of pts worried when they were unable to work or contribute financially, and 45% (421/936) felt like a burden. 77% (775/1012) of pts reported sleeping in the day at least occasionally, and 58% (491/855) felt their sleep quality would be better without ITP. Fatigue was a major symptom of ITP for 549 (54%) pts at diagnosis, and 399 (93%) MDs estimated that at diagnosis fatigue was at least sometimes assessed. Pts reported that ITP impacted their ability to concentrate on daily tasks, with 50% (513/1017) experiencing this sometimes and 19% (196) more than half the time. 93% (390/421) of MDs estimated that at least some of their pts have trouble concentrating because of their ITP. 313 (73%) MDs considered pt perceptions when making treatment decisions. MDs estimated that 15% of their pts have opted against ITP medication. 56% (228/413) of MDs believed that pts feel a burden from dietary changes to accommodate ITP medication, and 22% (204/939) of pts had adherence difficulties. 305 (71%) MDs reported pts were willing to pause treatment following sustained response (defined at MD discretion). Despite this, 67% (680/1013) of pts showed concern over relapsing if current treatments were stopped. During the COVID-19 pandemic, 341 (79%) MDs reported that ITP management was impacted (fewer pt visits and tests; only managing pts with severe ITP), and 118 (27%) reported it affected treatment prescription (longer course, pt administration and fewer immunosuppressants). Summary/Conclusion: ITP negatively affects emotional wellbeing, and treatments for ITP have a complex impact on QoL, leading to improvements when effective but potentially creating adherence problems and daily life disruption. As expected, management challenges were exacerbated in the pandemic. Relapse is a concern for many pts discontinuing treatment, and the value of sustained response could be highlighted to mitigate this.Keywords: Patient, Immune thrombocytopenia (ITP), COVID-19, Quality of life

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 distillée sur la base complète

Imitation des enseignants

Ni prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.

score de la tête « metaresearch » (Codex)0,000
score de la tête « metaresearch » (Gemma)0,000
Version: codex-gemma-dda1882f352aStatut de validation: machine_predicted_unvalidated
Catégories candidatesaucune
Catégories consensuellesaucune
DomaineSignal candidat: aucune · Signal consensuel: aucune
Devis d'étudeSignal candidat: Observationnel · Signal consensuel: aucune
GenreSignal candidat: Empirique · Signal consensuel: Empirique
Score de désaccord entre enseignants0,849
Score d'incertitude au seuil0,511

Scores Codex et Gemma par catégorie

CatégorieCodexGemma
Métarecherche0,0000,000
Méta-épidémiologie (sens strict)0,0000,000
Méta-épidémiologie (sens large)0,0000,000
Bibliométrie0,0000,001
Études des sciences et des technologies0,0000,000
Communication savante0,0000,000
Science ouverte0,0000,000
Intégrité de la recherche0,0000,000
Charge utile insuffisante (le modèle a refusé de juger)0,0000,000

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.

Tête enseignante Opus0,034
Tête enseignante GPT0,303
Écart entre enseignants0,269 · la distance entre les deux têtes enseignantes sur ce seul travail
Statut de validationscore_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 découle

Classification

machine, non validée

Prédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.

Les modèles n’ont appliqué aucune catégorie : rien dans la taxonomie ne correspondait à ce travail.
Devis d'étudeObservationnel
Domainenon disponible
GenreEmpirique

Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».

En bref

Citations0
Publié2023
Routes d'admission1
Résumé présentoui

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