WHAT DOES MAINSTREAM MEDIA SAY ABOUT ENZYME REPLACEMENT THERAPIES?
Notice bibliographique
Résumé
BACKGROUND: Enzyme replacement therapies (ERTs) can be used to treat certain inherited diseases, many of which present in childhood. ERT drug development costs are high, as are market prices. Many provinces have special programs that provide coverage for expensive drugs; however, coverage of ERTs is not universal and the costs are beyond most patients or their families. Because of this, ERTs are often the focus of media attention, commonly to obtain provincial ERT funding for a specific patient. Pediatricians may be presented with these media reports and asked to support those trying to obtain provincial funding. OBJECTIVES: Given the increasing media pressure on those who approve funding for rare drugs, this study explored medical reporting regarding ERTs in print media. DESIGN/METHODS: Canadian Newsstream database was searched for articles about three ERTs – Elaprase, Naglazyme and Vimizim. Articles fulfilling inclusion criteria were reviewed for: data regarding efficacy and adverse events, mention of role of health care professionals, and sources of medical information. Thematic analysis was used to explore how efficacy was described within the articles. Data was also extracted from product monographs, and recent meta-analyses, where possible to serve as a basis for comparison. Descriptive statistics were completed where appropriate. RESULTS: Of 101 articles reviewed, 57 articles were included in the study. Nine percent of articles alluded to or reported data from clinical trials about drug efficacy; 7% of articles mentioned adverse events. Where opinion was obtained on the medical necessity or efficacy of the drug, only 23% were quoted from a physician. Opinion was most commonly obtained from a politician. Physicians were mentioned in only 49% of the articles. Roles filled by physicians were reported to include patient care/diagnosis, approval of the drug, or advocating for due process. CONCLUSION: Reporting about the efficacy and safety of ERTs was often incomplete or inaccurate. This study is of importance as mainstream media reporting may impact perceptions of families with rare diseases presenting to pediatricians, family doctors or genetics clinics who may be candidates for ERT. Additionally, incorrect reporting of medical information may influence the social pressures placed on the government and possibly the funding approval of these drugs. Physicians should be aware of the misleading information their patients are exposed to.
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 | 0,017 | 0,129 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,017 | 0,018 |
| Études des sciences et des technologies | 0,003 | 0,006 |
| Communication savante | 0,014 | 0,013 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,004 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,010 | 0,001 |
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 ».