P130 Unmet needs and treatment preferences concerning digital ulcers in patients with systemic sclerosis
Notice bibliographique
Résumé
Abstract Background/Aims Digital Ulcers (DU) affect around half of systemic sclerosis (SSc) patients and are associated with significant pain and difficulties in daily life. Despite available treatment options, DUs are often recalcitrant and recurrent. Our aim was to examine the patients’ perspectives concerning the unmet needs and treatment of SSc-DUs. Methods SSc patients with past DU were invited through international patient associations/social media to participate in an online English-language survey. The survey was launched on 31st January 2023 and open for four weeks. Results A total of 358 evaluable responses were collected from 11 countries, mainly from USA (65.6%), UK (11.5%) and Canada (4.5%). 81,6% of respondents were aged 30-70 years and 93% were female. Almost all (96.1%) had >1DU during the course of their disease (46% >10 DUs), mainly localised on the fingertips (84.9%). DUs have broad-ranging impacts: activities of daily living (79% ‘agreed’ or ‘strongly agreed’), work activities (73% ‘agreed’ or ‘strongly agreed’), future planning (64% ‘agreed’ or ‘strongly agreed’), and interpersonal relationships and/or social activities (59% ‘agreed’ or ‘strongly agreed’). Only one quarter (26.2%) of respondents were satisfied with currently available treatments, or treatment efficacy on main ulcer symptoms such as pain (24%). Half (51.7%) of respondents received wound/ulcer care, with only a third (31.4%) via a dedicated rheumatological/wound care clinic. The most frequent DU interventions were: wound cleaning (58.9%), ulcer dressing (63.2%) and debridement (27%), while botulinum (8.1%), fat injection (1.6%), sympathectomy (10.3%), and surgery (16.8%) were less frequent. Among respondents, the majority (71.3%) were ‘likely’ or ‘very likely’ to consider local DU treatment, 68.4% oral therapy, 43.8% intravenous treatments and 30.4% surgical approach. Figure 1 presents respondents perceived factors that may delay DU healing (1A), reasons to seek healthcare professional advice (1B), and reasons to change treatment (1C). Education about tDU complications is limited (34.1%), including recognition (30.8%), and actions to be taken (25%). Conclusion DUs have significant broad-ranging impacts there are many unmet needs have emerged. Local wound care is not standardized across specialist centers and patient education is often neglected. Dedicated treatment recommendations are urgently needed to optimise the therapeutic strategy, including non-pharmacological interventions. Disclosure G. Bandini: None. A. Alunno: None. B. Ruaro: None. I. Galetti: None. B. Alcacer-Pitarch: None. F. Oliveira Pinheiro: None. G. Campanaro: None. J. Jade: None. L. Muir: None. A. Moggi Pignone: None. Z. McMahan: None. K. El Aoufy: None. M. Matucci Cerinic: None. M. Hughes: None.
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 | 0,001 | 0,005 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 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 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 ».