Patient-Centered Outcomes Research Institute (PCORI) multisite project to develop treatment decision aids for racial/ethnic minorities with lupus nephritis
Notice bibliographique
Résumé
The Patient-Centered Outcomes Research Institute (PCORI) was established to support research that informs US health reform. The PCORI aims to provide patients and the public with information to facilitate healthcare decision-making, including to 'develop, refine, test, and/or evaluate patient-centered approaches, including decision support tools.' Here we describe the first PCORI project in systemic lupus erythematosus (SLE), in which we aim to develop an individualized patient decision aid for lupus nephritis. The project uses a multiphase approach to develop and test a decision aid, combining comparative effectiveness research, qualitative research with patients, decision-aid prototype development, and a randomized controlled trial. We performed comparative effectiveness research (CER) using state-of-the-art network meta-analyses to assess effectiveness and toxicities of treatments for lupus nephritis. Concurrently, patients with lupus nephritis participated in Nominal Group Technique (NGT) groups. Participants identified facilitators and barriers they faced when considering and taking drugs for lupus nephritis. In the coming year, information from the CER and NGT will be used to create a prototype decision aid, with input from diverse project stakeholders, including design consultants, clinicians, researchers, lupus organizations and patients. We will then perform a randomized controlled trial to assess the effectiveness of the decision aid (vs. usual care) in patients with incident or recurrent lupus nephritis. Primary outcomes include measures of decisional conflict and informed choice. Secondary outcomes include the control preferences scale and interpersonal processes of care, and exploratory outcomes will include medication adherence and persistence, cumulative glucocorticoid exposure, and renal response. The CER and NGT have been completed. Fifty-two patients, who were predominantly African American and Hispanic, participated in NGT groups. Patients identified barriers and facilitators to use of immunosuppressive drugs in two 1-hour sessions, each with three to nine patients. Data from CER and NGT are currently being analyzed. A prototype decision aid will be developed based on the results of the CER and NGT, and subsequently piloted in patients before the randomized trial. The decision aid resulting from this project will be nonproprietary, free of cost and readily available for use both in the United States and internationally. Use of the tool is expected to facilitate patient-centered care for lupus nephritis by providing information that both scientific evidence and patients themselves indicate is critical before commencing therapy. The project aims to improve decision-making and health outcomes for lupus nephritis, particularly among racial/ethnic minorities.
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 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 | 0,006 | 0,003 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,003 |
| Études des sciences et des technologies | 0,004 | 0,001 |
| Communication savante | 0,000 | 0,001 |
| Science ouverte | 0,001 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 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 ».