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Background/Aims Up to one-third of people with rheumatological conditions were required to 'shield' from COVID-19. This co-produced, qualitative research aimed to understand experiences of the shielding process and the impact of shielding upon people's lives. Methods Adults who shielded due to rheumatological disease participated in audio-recorded interviews and focus groups (FGs). Framework analysis combined inductive and deductive approaches. Creative materials were collected. Two patient contributors proposed the study, are co-investigators, and conducted the research alongside a clinical academic and four-member patient advisory group. COREQ and GRIPP2 guidelines were followed. Full ethical approval was granted by the University of Manchester Research Ethics Committee (2021- 11544-20348). Results Data were generated from 28 interview and 12 FG participants between October 2021-January 2022. 15 people contributed creative materials. Characteristics included 44/48 (85%) female, ages 18-75 years, non-white 10/48 (21%), all UK regions (Table 1). Corbin & Strauss's theory, 'Three lines of work: Managing chronic illness', frames the findings. Shielding increased and shifted the burden of 'illness work' onto patients, e.g., in gaining access to vaccines and navigating risks and uncertainties due to COVID-19. 'Life work' was increased as participants struggled to access food and medicines. Participants' self-identity was re-appraised in the context of their illness. Many feared for their lives because of their diagnosis for the first time, increasing 'biographical work'. Participants' perceived value to society changed over time: feeling equal to the general population at the first UK national lockdown;abandoned by society due to 'freedom day' and formal shielding's end. 'Emotional work' was added to 'Three lines of work'. Shielding notification induced fear, stress, devastation, shock and disbelief, balanced by a feeling of being protected. Emotions experienced include anxiety, guilt, anger and frustration. Mental health problems were experienced, often for the first time. Many continued to shield beyond formal shielding's end. Conclusion This co-produced, qualitative research highlights experiences and impact of shielding including increased illness, life, biographical and emotional work. Clearer, personalised information would help shielders to understand their risk and vaccine response, informing re-integration into society.
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Background/Aims Quality improvement (QI) is now an expected part of healthcare professional practice. After identifying a gap in available training and successfully delivering a QI course for 35 clinicians at the Northwest Rheumatology Club, trainee representatives were invited by the BSR invited to convene a national workshop. Methods The first BSR Quality Improvement Practical Methodology Workshop was held in March 2021 (online, due to COVID-19). Materials were adapted from the well-established Trainees Improving Patient Safety through Quality Improvement (TIPSQI) initiative. Plenaries covered the Model for Improvement, process mapping, SMART aims, driver diagrams, stakeholder engagement, illustrated using rheumatologyspecific case-studies. Delegates (with mixed experience / professional role) practiced using tools in small, facilitated, breakout rooms. Precourse surveys informed course design. Post-course and six-month follow up surveys evaluated impact. Because there are no validated tools to evaluate the impact of QI training, Kirkpatrick's four-step hierarchical model, commonly used in this context, was employed. Results Of 30 delegates (consultants, trainees, pharmacists, nurses, physiotherapists), 28, 22 and 4 completed pre-course, post-course and six-month surveys, respectively (Table 1). For Kirkpatrick level 1, 'reaction', all respondents were 'satisfied', with 100% recommending to colleagues. Using driver diagrams as an exemplar to evaluate level 2, 'learning', pre-course, delegates were: not aware 16/28(57.1%), aware 9/28(32.1%), confident to use 3/28(10.1%), 0/29(0%) confident to teach. Post-course improvements showed confidence to use 22/ 22(100%), and teach 12/22(54.6%) (maintained at six months). Given low numbers of six-month respondents, assessing long-term impact is challenging. Evaluating level 3, 'behaviour', all 4/4(100%) respondents conducted QI post-course, with 2/4(50%) teaching. Delegates reported that the course gave confidence to use tools and support others. In evaluating level 4, 'results', 1/4(25%) felt the course had changed the impact of their work, with 3/4(75%) reporting time and institutional constraints as barriers to conducting QI. Conclusion The QI course has been commissioned as a BSR annual 'core educational' offering, with feedback showing it was needed, wanted, and effective in delivering core QI principles. In response to six-month feedback, additional post-course-support is planned in future, aiming to capacity build expertise in QI and embed a sustainable culture of improvement across the rheumatology community.
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Background/Aims Patients with rheumatoid arthritis (RA) need support to understand and manage their condition. The COVID-19 pandemic rapidly transformed outpatient clinical consultations from face-to-face towards remote models. This increased the emphasis placed upon self-assessment of joints and disease activity, strengthening the need for patient education materials. We planned to develop a video to support patient research participants to monitor disease activity remotely using the REMORA app. We altered the video's scope and made it open access to meet the need created by changes in service delivery models. Methods A video demonstrating self-examination of tender and swollen joints in RA was co-produced with patients and the multi-disciplinary team. A nurse consultant introduces key concepts, (how to identify and examine tender and swollen joints, which joints to include, etc), coaches a patient through self-examination, and answers key questions. Materials co-produced to support implementation into practice include a joint count manikin and table, an advertising poster, and blogs. Collaboration with international research colleagues has led to the production of a version dubbed in German. Subtitles are available in German and Hindi. Online feedback was sought via a survey. Ethical approval was not required as all contributors acted as equal members of the research team. Results The 15-minute video, supporting materials and survey were uploaded to YouTube in February 2021 [tinyurl.com/REMORAvideo]. 1,000 hits were received in week one, reaching >12,500 after eight months. 20% of viewers are UK-based, 15% from the USA, 10% from India. 26% of views used English subtitles, 0.2% German, 0.1% Hindi. 124/125 people engaging with the 'like/dislike' function on YouTube, 'liked' the video. 48 people fed-back online (26 patients, 22 clinicians). Patient ages were: 18-35(5%), 36-55(62%), 56-75(29%), 76+(5%), the majority of whom were female (19/21[91%]). Before watching, 14/ 17(82%) patients rated themselves as 'poor'-'fair' at self-examination: after watching, the same number rated themselves as 'good'- 'excellent'. 19/21(90%) and 17/21(81%) patients respectively either somewhat or strongly agreed with the statements 'I now feel confident to self-examine for' 'tender' or 'swollen' joints. 19/21(90%) of patients and 13/17(77%) clinicians either somewhat or strongly agreed with the statement that 'the video fulfilled my expectations'. 18/21(86%) patients and 12/17(71%) clinicians would recommend the video. To date, several national organisations have engaged with the video. It supports the BSR ePROMS platform and national audit. The National Rheumatoid Arthritis Society plans to incorporate it into the 'Know your DAS app', and it will contribute to an NHSX playbook of digital best practice. Conclusion This co-produced training video for people with RA, originally intended to support a remote monitoring app, has been well-received, with much wider-reaching international impact than anticipated. This demonstrates the need for materials collaboratively designed with patients to support patient self-management of long-term conditions, in the digital era.
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Background/Aims Up to one-third of people living with inflammatory arthritis or autoimmune disease may have been classified as 'clinically extremely vulnerable' (CEV) to COVID-19 and required to 'shield'. Communication regarding shielding notification and details of how to shield were unclear, causing confusion and uncertainty. Most research into the impact of shielding on people living with musculoskeletal disease has involved either quantitative or survey-based data, with little patient involvement. This project aims to capture patient 'stories' to understand and explore the experiences of people with inflammatory musculoskeletal conditions who shielded, using co-produced, qualitative methodology. Methods The Centre for Epidemiology Versus Arthritis (CfE) is committed to involving patients and the public, convening a COVID-19 Patient and Public Involvement (PPI) group early in the pandemic. Two PPI group members developed the research idea and collaborated with a clinical academic to co-produce a successful grant application to the Versus Arthritis 'New opportunities' fund. The research aims to capture experiences and opinions on the processes for determining and communicating who is identified as CEV, and the impact of shielding upon individuals' lives. We will develop recommendations to improve the process for subsequent pandemics. People who shielded due to inflammatory arthritis / auto-immune disease are invited to discuss their experiences of shielding in semi-structured interviews (n=30) or focus groups (n=12). Up to 50 participants may submit creative materials (artwork, poetry, photographs or written word), to include those unable, or unwilling, to speak about their experiences. A framework approach to thematic analysis of data generated from interviews and focus groups will be employed. Creative materials will be used to illustrate these themes. In addition to the core team, an experienced Patient Advisory Group will contribute to the analysis. Full ethical approval was awarded by the University of Manchester Research Ethics Committee. The 'core team' (two patient/public contributors and a clinical academic) are committed to 'co-production': working together in equal partnership, driven by values such as transparency, sharing power and inclusivity, which we anticipate will improve the relevance and quality of this work. Results Recruitment to interview and focus groups was exceeded within 10 days. Half the creative materials participants were recruited within a month, and recruitment remains open. The team have given invited talks at several national and regional events, discussing the research and methodological approach, demonstrating the significant interest generated by this work. Conclusion Although most funders now mandate some form of PPI in grant applications, research ideas conceived and genuinely co-produced by patient partners are rare. The CfE's commitment to PPI enabled conversations and collaboration, which built on existing relationships, and led to successful grant funding. We look forward to further highlighting and sharing both the model of our collaboration, and the qualitative research findings.
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Background/AimsIn 2017 an audit and survey of giant-cell arteritis (GCA) services wereconducted across northwest England (reported previously). This resurvey in 2020, following publication of revised BSR guidance, soughtto identify what changes were made in the intervening period, andprovided the opportunity to assess the impact of COVID-19.MethodsRheumatologists from 16 hospitals in northwest England were invitedto complete a survey in July 2020. Questions focused on serviceprovision for GCA, including pathways, diagnostics and steroidprescription.ResultsResponses were received from 14/16 sites in 2017, and 15/16 in 2020.9/15 (60%) sites reported that the 2017 audit and survey promptedchanges to GCA services, with two (13%) stating that it clarified theneed for implementation of existing plans. Two sites had a GCApathway in 2017. Four of the seven sites who committed to introducingone have now done so, bringing the total in 2020 to six. Eight of thenine remaining sites plan to implement one, six with a specific datewithin six months. Six (40%) have completed additional local audit/QIsince 2017. Temporal artery (TA) ultrasound (US) is now available in anadditional four sites, bringing the total to 6/15 (40%) in 2020. Two sitesreported improvement in both time between first rheumatologyconsultation and TA biopsy, and time to receive results (now <7days for each task in 6/15 (40%)). Six additional sites reportedproviding leaflets on steroids routinely, bringing the total in 2020 to 12/15 (80%), versus 6/14 (43%) previously. Four sites (27%) now have adatabase of GCA patients (one in 2017). There was no major change insites having a standard protocol for steroid taper (n = 8 2017;n = 72020, 89% and 100% of whom respectively use BSR guidance), nor inthe number of patients routinely provided steroid cards (six in 2017;five in 2020). The three sites who do not report giving leaflets onsteroids routinely, all had a pathway. 8/15 (53%) reported COVID-19having an adverse effect upon services, including: reduced access todiagnostics (n = 7: TA US, biopsy, and PET-CT);delayed appointments(n = 4);delayed referrals (n = 3). The tertiary referral centre reported animprovement because access to tocilizumab was facilitated by arelaxation of rules by NHS England.ConclusionThe original audit and survey of current GCA practice in 2017highlighted areas for improvement for each site, and regionally. Sitescontributing to this re-survey report that the exercise stimulated themto improve their current care. The 2017 exercise showed a strongcorrelation between reported practice (survey) and actual practice(audit), leading us to have confidence that responses provided a truepicture of care. This work demonstrates the power of audit to driveimprovement, at a regional level.