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Zoe E Clark, Will Gregory, Antoni Chan, Aisling Coy, Zoe Cox, Sally Dickinson, Karl Gaffney, Beverley Harrison, Helena Herbert, Claire Lewis, Catherine McCoy, Katharine Noel, Katy Porthouse, Kathryn Rigler, Kate Weight, Tom Williams, Dale Webb, Lisa Dunkley, P264 Bridging the gap: co-producing a virtual self-management programme for individuals living with axial spondyloarthritis, Rheumatology, Volume 61, Issue Supplement_1, May 2022, keac133.263, https://doi.org/10.1093/rheumatology/keac133.263
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Abstract
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).
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.
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.
| Attendee Feedback (54% response rate) . | % attendees . | . |
|---|---|---|
| Felt they understood more about managing their axSpA | 86 | |
| Felt more confident managing their pain | 80 | |
| Felt more confident managing flares | 75 | |
| Felt closer to their rheumatology team after the session | 70 | |
| Felt more confident approaching their rheumatology team and self-referring (where appropriate) | 75 | |
| Felt more comfortable discussing their emotional wellbeing with their rheumatology team | 78 | |
| Found it helpful to meet other people with axSpA | 95 | |
| Find gaps between clinic visits isolating | 83 | |
| Felt a session specifically for newly diagnosed patients (within last 2 years) would be beneficial | 87 | |
| Felt the session would be beneficial for patients at all stages of their condition | 86 | |
| Would value small, interactive sessions with HCPs and patients from their own hospital | 83 | |
| Would prefer larger, regional sessions in future | 59 | |
| Found it easy to attend the session | 98 | |
| Felt confident attending a similar future session | 100 | |
| Found it more convenient than an in-person event | 86 | |
| HCP Feedback (67% response rate) | % HCPs | |
| Felt the sessions were beneficial for their patients | 100 | |
| Were interested in holding future sessions | 100 | |
| Felt that just the right amount of preparation time was involved | 100 | |
| Felt the draft content was extremely helpful | 100 | |
| Free text responses from HCPs - areas identified as particularly positive: | ||
| Breakout rooms and opportunity to speak with patients | Session length and facilitation by NASS team | Use of features to encourage attendee interaction |
| Attendee Feedback (54% response rate) . | % attendees . | . |
|---|---|---|
| Felt they understood more about managing their axSpA | 86 | |
| Felt more confident managing their pain | 80 | |
| Felt more confident managing flares | 75 | |
| Felt closer to their rheumatology team after the session | 70 | |
| Felt more confident approaching their rheumatology team and self-referring (where appropriate) | 75 | |
| Felt more comfortable discussing their emotional wellbeing with their rheumatology team | 78 | |
| Found it helpful to meet other people with axSpA | 95 | |
| Find gaps between clinic visits isolating | 83 | |
| Felt a session specifically for newly diagnosed patients (within last 2 years) would be beneficial | 87 | |
| Felt the session would be beneficial for patients at all stages of their condition | 86 | |
| Would value small, interactive sessions with HCPs and patients from their own hospital | 83 | |
| Would prefer larger, regional sessions in future | 59 | |
| Found it easy to attend the session | 98 | |
| Felt confident attending a similar future session | 100 | |
| Found it more convenient than an in-person event | 86 | |
| HCP Feedback (67% response rate) | % HCPs | |
| Felt the sessions were beneficial for their patients | 100 | |
| Were interested in holding future sessions | 100 | |
| Felt that just the right amount of preparation time was involved | 100 | |
| Felt the draft content was extremely helpful | 100 | |
| Free text responses from HCPs - areas identified as particularly positive: | ||
| Breakout rooms and opportunity to speak with patients | Session length and facilitation by NASS team | Use of features to encourage attendee interaction |
| Attendee Feedback (54% response rate) . | % attendees . | . |
|---|---|---|
| Felt they understood more about managing their axSpA | 86 | |
| Felt more confident managing their pain | 80 | |
| Felt more confident managing flares | 75 | |
| Felt closer to their rheumatology team after the session | 70 | |
| Felt more confident approaching their rheumatology team and self-referring (where appropriate) | 75 | |
| Felt more comfortable discussing their emotional wellbeing with their rheumatology team | 78 | |
| Found it helpful to meet other people with axSpA | 95 | |
| Find gaps between clinic visits isolating | 83 | |
| Felt a session specifically for newly diagnosed patients (within last 2 years) would be beneficial | 87 | |
| Felt the session would be beneficial for patients at all stages of their condition | 86 | |
| Would value small, interactive sessions with HCPs and patients from their own hospital | 83 | |
| Would prefer larger, regional sessions in future | 59 | |
| Found it easy to attend the session | 98 | |
| Felt confident attending a similar future session | 100 | |
| Found it more convenient than an in-person event | 86 | |
| HCP Feedback (67% response rate) | % HCPs | |
| Felt the sessions were beneficial for their patients | 100 | |
| Were interested in holding future sessions | 100 | |
| Felt that just the right amount of preparation time was involved | 100 | |
| Felt the draft content was extremely helpful | 100 | |
| Free text responses from HCPs - areas identified as particularly positive: | ||
| Breakout rooms and opportunity to speak with patients | Session length and facilitation by NASS team | Use of features to encourage attendee interaction |
| Attendee Feedback (54% response rate) . | % attendees . | . |
|---|---|---|
| Felt they understood more about managing their axSpA | 86 | |
| Felt more confident managing their pain | 80 | |
| Felt more confident managing flares | 75 | |
| Felt closer to their rheumatology team after the session | 70 | |
| Felt more confident approaching their rheumatology team and self-referring (where appropriate) | 75 | |
| Felt more comfortable discussing their emotional wellbeing with their rheumatology team | 78 | |
| Found it helpful to meet other people with axSpA | 95 | |
| Find gaps between clinic visits isolating | 83 | |
| Felt a session specifically for newly diagnosed patients (within last 2 years) would be beneficial | 87 | |
| Felt the session would be beneficial for patients at all stages of their condition | 86 | |
| Would value small, interactive sessions with HCPs and patients from their own hospital | 83 | |
| Would prefer larger, regional sessions in future | 59 | |
| Found it easy to attend the session | 98 | |
| Felt confident attending a similar future session | 100 | |
| Found it more convenient than an in-person event | 86 | |
| HCP Feedback (67% response rate) | % HCPs | |
| Felt the sessions were beneficial for their patients | 100 | |
| Were interested in holding future sessions | 100 | |
| Felt that just the right amount of preparation time was involved | 100 | |
| Felt the draft content was extremely helpful | 100 | |
| Free text responses from HCPs - areas identified as particularly positive: | ||
| Breakout rooms and opportunity to speak with patients | Session length and facilitation by NASS team | Use of features to encourage attendee interaction |
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.
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.
- patient referral
- consultation
- exercise
- emotions
- fatigue
- disclosure
- feedback
- fees and charges
- ownership
- pain
- patient isolation
- rheumatology
- software
- sleep
- stress
- teaching
- no-observed-effect level
- nocturnal pain
- social survey
- self-management
- group education
- feelings
- facilitation
- national health service (uk)
- axial spondyloarthritis
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