OA10 Peer support for people living with axial spondyloarthritis as part of a supported self-management programme
Notice bibliographique
Résumé
Abstract Background/Aims The National Axial Spondyloarthritis Society (NASS) Supported Self-management Programme aims to empower people with axial spondyloarthritis (axial SpA) to live well with their condition. We ran peer support meet-ups as part of our new Your SpAce programme to improve attendees’ knowledge of their condition, and reduce feelings of isolation. Methods In March 2023, NASS launched Your SpAce, a series of short information and lived experience videos, with downloadable practical resources. It is aimed at people newly diagnosed or those diagnosed longer who had not previously engaged with their condition. The programme was created in consultation with people living with axial SpA and healthcare professionals (HCPs). A steering group comprised 33% people with lived experience. Monthly free online peer support ‘meet-ups’ were planned. Initial topics aligned with Your SpAce topics of pain, flares, and fatigue. Feedback and helpline enquiry trends guided further topics. Attendees booked via an Eventbrite listing, disseminated via the NASS website, social media and e-newsletter, partner organisations, and HCPs. The meet-ups are facilitated by a HCP who lives with axial SpA. Sessions start with a short introduction to axial SpA and the meet-up topic. The focus is on facilitated group discussions, where attendees use their camera and microphone and chat box to meet other people with axial SpA, ask questions, share advice, and receive peer support. Results Your SpAce webpages ask visitors how confident they feel in managing their pain, flares, and fatigue out of 100 (0=not at all, 100=extremely). The results (701 respondents) indicate the programme is reaching people with low confidence, with 60% of pain poll respondents, 69% of fatigue poll respondents, and 72% of flare poll respondents ranking their confidence 0-40/100. Since April 2023, we ran 10 meet-ups, with 516 bookings and 256 attendees. Everyone who booked received presentation slides and resources. In-meeting anonymous polls showed: 25% of attendees had been diagnosed for less than one year; 31% 1-5 years; 11% 6-10 years; and 33% more than 10 years. 24% have a diagnosis of axial SpA, 22% non-radiographic axial SpA, 51% radiographic axial SpA/ankylosing spondylitis, and 3% awaiting diagnosis. Anonymous feedback survey results (n = 67) showed: 97% enjoyed attending the meet-up; 96% found it easy to attend; 82% said the meet-up helped them understand more about their condition; 74% have more practical skills to manage; 54% had never previously met anyone else with axial SpA; 97% felt less alone afterwards; and 99% would like to attend another meet-up. Conclusion The first six months of Your SpAce meetups have improved attendees’ knowledge of axial SpA, increased practical skills in managing symptoms, and reduced feelings of isolation. Results suggest that informal online peer support is a positive strand of supported self-management for people at all stages of their axial SpA. Disclosure Z. Clark: Honoraria; ZC is a member of Council for the Institute of Osteopathy. Grants/research support; NASS receives grant funding from AbbVie, Biogen, Eli Lilly, Janssen, Novartis and UCB.
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 | 0,005 | 0,011 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,001 |
| Bibliométrie | 0,001 | 0,000 |
| Études des sciences et des technologies | 0,003 | 0,001 |
| Communication savante | 0,002 | 0,001 |
| Science ouverte | 0,001 | 0,007 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,034 | 0,004 |
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 ».