P264 Bridging the gap: co-producing a virtual self-management programme for individuals living with axial spondyloarthritis
Bibliographic record
Abstract
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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.007 | 0.011 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.003 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.002 | 0.011 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.022 | 0.005 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".