THE UNMET NEEDS OF LUPUS PATIENTS: CREATING VISIBILITY AND SUPPORTING PATIENTS AND FAMILIES IN THEIR JOURNEY
Notice bibliographique
Résumé
PV290 / #641 Case Report Poster Topic: AS17 - Miscellaneous Introduction Right from the first symptom, through diagnosis and coping with the many phases of living with lupus, this chronic autoimmune disease has proven to be a lonely journey that most patients thread. With 3 rheumatologists to a population of about 31 million, the huge provider to patient gap in the workforce necessitates the need for interdisciplinary and collaborative efforts from both clinical and nonclinical personnel to meet the demand for holistic care of not only patients, but their caregivers, families, loved ones and society at large. Case Presentation With Investigation Over the years, the increasing report of autoimmune conditions, particularly lupus, in Ghana, and the continent of Africa at large, suggests their ubiquity and not rareness as was previously perceived. The autoimmune disease landscape, as studies reveal, is complex, almost other-worldly in contexts with dearth of information. Lupus has been a mysterious silent killer in Ghana. It is significantly difficult to get any relevant information required to inform policy as well as garner support for lupus patients. Literature Review In Ghana, this situation is further compounded by challenges such as misdiagnosis, delayed referrals, economic challenges and sociocultural beliefs. The labyrinth of accessing the needed healthcare, lengthy process of obtaining clinical diagnoses and its ripple effect on the quality of life, finances and social life in themselves, often overwhelms many patients and pushes them to the edge of despair. Moreover, the lack of awareness among relevant stakeholders and the public further exacerbates the challenges that exist. Acknowledgment of these challenges has been the reason for the work of Oyemam Autoimmune Foundation (OYEMAM) in creating visibility about lupus and raising support for those affected directly and indirectly through its flagship lupus awareness campaign since 2016 in Ghana. Discussion The Foundation, which is a patient-led registered nonprofit has remained committed to inspiring hope through advocacy with policymakers and other relevant stakeholders; education and raising awareness through the media, engaging with diverse audiences in-person and virtually, as well as providing support for people living with lupus and other autoimmune conditions. OYEMAM has been deliberate about the counseling needs for those affected, recognizing this often-overlooked burden and addressing it in many little ways has brough much relief and hope to many patients and their families. This paper adopts a walkthrough approach to examine the strategies of OYEMAM’s interventions by presenting the lived experiences of those we have engaged with and some of the impact made so far. We acknowledge patients and all who have and continue to contact OYEMAM giving us a reason to strive on and contribute to this misunderstood and underserved aspect of human life and health.
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 | 0,004 | 0,019 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,010 | 0,003 |
| Communication savante | 0,007 | 0,009 |
| Science ouverte | 0,002 | 0,012 |
| Intégrité de la recherche | 0,005 | 0,011 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,016 | 0,002 |
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 ».