P264 Bridging the gap: co-producing a virtual self-management programme for individuals living with axial spondyloarthritis
Notice bibliographique
Résumé
Abstract Background/Aims Despite the considerable impact axial spondyloarthritis (axSpA) has on quality of life, condition-specific group education programmes are not routinely offered. Many people with axSpA report feeling isolated and often have never met anyone else with the condition. In 2020, the National Axial Spondyloarthritis Society (NASS) worked with patients and rheumatology departments to co-produce a pilot self-management programme (SMP) to explore demand from and assess the impact on patients and healthcare professionals (HCPs). Methods NASS identified six NHS centres to host the pilot SMP sessions. These centres represented a range of axSpA services. HCPs invited their axSpA cohort to attend by post or e-mail and NASS invited local NASS members. Attendees booked online via private URL. NASS developed content following consultation with rheumatology HCPs and people living with axSpA. The first session covered pain, flares, fatigue and emotional wellbeing. Following attendee feedback, three centres hosted a second session on medication and exercise. One centre held a third session covering night pain, sleep and stress. Sessions were delivered via online meeting software and included teaching, group discussions, polls and exercise. HCPs of the host rheumatology departments led these sessions in tandem with NASS staff, one of whom has lived experience of axSpA. Content and format were continually reviewed and improved using feedback from attendees and HCPs (Table 1); feedback was gathered by email, informal focus groups and anonymous surveys. Results A total of 266 patients attended. 55% were female and 27% were aged under 45. 10% were diagnosed within the past year; 26% within the last 5 years; >50% more than 10 years ago. No attendees had previously attended a hospital axSpA SMP session. Conclusion There is demand from patients and HCPs for an axSpA virtual patient SMP. Co-producing the programme can be effective for: engaging with a range of patients; educating and empowering patients to self-manage their condition; building relationships between HCPs and patients; reducing patient isolation; enabling appropriate self-referral to rheumatology services. This pilot has informed our next steps to expand the online sessions to new centres and explore co-producing an e-learning programme. Disclosure Z.E. Clark: Grants/research support; National Axial Spondyloarthritis Society receives grant funding from AbbVie, Biogen, Eli Lilly, Janssen, Novartis, UCB. W. Gregory: Honoraria; Speaker, conference registration and advisory board fees from AbbVie, Pfizer, Novartis, UCB. A. Chan: Member of speakers’ bureau; UCB, Novartis, Sanofi, AbbVie, Jannsen. A. Coy: None. Z. Cox: None. S. Dickinson: Grants/research support; National Axial Spondyloarthritis Society receives grant funding from AbbVie, Biogen, Eli Lilly, Janssen, Novartis, UCB. K. Gaffney: Shareholder/stock ownership; SpA Academy. Honoraria; Novartis, AbbVie, UCB, Lilly, Pfizer, Biogen. Member of speakers’ bureau; Celltrion, Novartis, UCB, AbbVie. Grants/research support; NASS, AbbVie, Pfizer, UCB, Novartis, Lilly, Jannsen, Gilead, Biogen. Other; Meeting expenses: AbbVie, Lilly, Roche, Novartis, Pfizer, UCB. B. Harrison: None. H. Herbert: None. C. Lewis: None. C. McCoy: None. K. Noel: None. K. Porthouse: None. K. Rigler: None. K. Weight: None. T. Williams: None. D. Webb: Grants/research support; National Axial Spondyloarthritis Society receives grant funding from AbbVie, Biogen, Eli Lilly, Janssen, Novartis, UCB. L. Dunkley: Honoraria; Honoraria with UCB, AbbVie, Pfizer.
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 | 0,007 | 0,011 |
| Méta-épidémiologie (sens strict) | 0,001 | 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 | 0,003 | 0,002 |
| Science ouverte | 0,002 | 0,011 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,022 | 0,005 |
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 ».