Notice bibliographique
Résumé
PV178a / #270 Poster Topic: AS19 - Patient-Reported Outcome Measures Background/Purpose Systemic Lupus Erythematosus (SLE) is a complex autoimmune disease that can manifest in a variety of ways. This study aims to explore the personal journey of living with Systemic Lupus Erythematosus (SLE) from the perspective of an individual patient. By sharing personal experiences, the study seeks to increase awareness of the disease highlight the challenges faced by patients, and emphasize the importance of self-documentation in managing SLE. The project aims to bridge this gap by utilizing a unique approach: a visual diary. Over the past 4 years, the researcher, the journalist and film maker living with SLE, has meticulously documented their daily healthy journey through photographs and videos. The visual records capture the evolution of various SLE manifestations, including skin lesions, hair loss and other systemic symptoms. Significance: By sharing this visual narrative, the project seeks to: Increase public awareness of SLE: Visual story telling can effectively convey the complexities of the disease to broader audience, challenging misconceptions and fostering empathy. Enhance patient-physician communications: Visual documentation can aid in diagnosis, treatment planning, and disease monitoring and to emphasize the importance of patient perspectives in driving research and treatment development, particularly in relation to quality of life and patient-reported outcomes. Advance medical research: The dataset of visual records may contribute to a deeper understanding of disease progression and treatment response. Empower Patients: Sharing personal experiences can provide support and inspiration to others living with chronic illnesses. Ethical considerations: The project adheres to ethical guidelines for research involving human subjects. Methods The project involves a qualitative, autoethnographic approach. The researcher’s daily visual records serve as primary data sources. These visual data will be analyzed using thematic analysis to identify patterns and themes related to the disease’s impact on the individual’s physical and emotional well-being. Results The patients initial symptoms included localized itching and marking on the right leg and arm, which rapidly progressed to more severe manifestations. As the condition worsened, the patient experienced significant physical and emotional challenges, such as scalp sores, facial skin peeling, pain, fatigue, and mood disturbances. These symptoms significantly impacted the patient’s quality of life and ability to perform daily activities. Conclusions This multimedia project chronicles a 4-year journey with Systemic Lupus Erythematosus (SLE). By visual documenting the disease’s progression, from initial skin manifestations to systemic impacts, this work aims to raise awareness and understanding of SLE. The project underscores the importance of early diagnosis, timely intervention, and patient advocacy. Through a combination of photography and videography, it offers a unique perspective on the lived experience of SLE, challenging societal perceptions and inspiring hope for individuals facing similar challenges.
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 | 0,001 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 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 | 0,001 |
| 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 ».