A CROSS‐SECTIONAL STUDY ON THE GLOBAL DIFFERENCES IN INFORMATION EXPERIENCES AND NEEDS OF PATIENTS WITH LYMPHOMA AND CLL
Notice bibliographique
Résumé
Background: Patient-centricity remains a cornerstone in the care of patients with lymphoma and CLL, as informed patients are consistently associated with better outcomes and healthcare experiences. Aims: This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the global differences in patients’ information experiences at diagnosis, as well as to compare the areas of need for more information. Methods: Globally, 9,179 patients with lymphoma or CLL from 89 countries took part in the LC 2020 GPS. The countries were grouped into regions, and regions with greater than 200 patient respondents were included in the analysis. The five regions analysed were Asia (AS) (n = 2326), Oceania (OC) (n = 695), Europe (EU)(n = 4343), North America (NA) (n = 1543), and South America (SA) (n = 214). Descriptive analyses of questions relating to patients’ information experiences at diagnoses and areas in which they needed more information were performed in IBM SPSS v27. Results: All the regions differed significantly (p < 0.05) in the demographic categories of age, sex, education level, and household status. When asked which time point patients had the greatest need for information, over half of patients in all the regions reported the time point as ‘within the first month following diagnosis’ (AS-62%, OC-58%, EU-57%, NA-53% and SA-59%) (Table 1). Relating to how patients felt about the amount of information they were given upon diagnosis with lymphoma, patients from AS were the most prevalent in reporting they were not given enough information (55%) followed by patients from NA (36%). Additionally, only 30% of patients from AS reported receiving the right amount of information, while 60% and more, of patients from NA, EU, SA, and OC reported the same (60%, 67%, 71% and 70% respectively) (Table 1). When asked about the specific areas patients needed more information in, the most commonly reported areas in all the regions were ‘treatment options’ (AS-76%, OC-44%, EU-50%, NA-61% and SA-40%), ‘diagnosis and what it means’ (AS-58%, OC-45%, EU-56%, NA-51% and SA-38%), and ‘treatment side-effects’ (AS-61%, OC-44%, EU-45%, NA-38% and SA-41%). Patients also reported needing information on ‘support for self care’, ‘psychological support’, ‘support for their families’, and ‘fertility’ (Table 1). Only 2% of patients from AS reported not needing any additional information compared to the other regions (OC-19%, EU-11%, NA-16% and SA-18%) (Table 1). Conclusion: Access to timely and credible medical information remains an essential aspect of a successful patient experience and this study shows that patients with lymphoma have diverse information experiences and needs. It is therefore important that doctors provide information that address(es) each patient's unique information needs. In the future, LC would like to explore how demographic differences may have confounded results. Keywords: Cancer Health Disparities Conflicts of interests pertinent to the abstract L. Warwick Research funding: Takeda, Pfizer and Abbvie O. Bamigbola Research funding: Takeda, Pfizer and Abbvie N. Dren Research funding: Takeda, Pfizer and Abbvie
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Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi 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.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,001 |
| 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 | 0,000 | 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) | 0,000 | 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 tête enseignante, 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 ».