Abstract
Background/AimsPatients 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.MethodsA 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.ResultsThe 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.ConclusionThis 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.Disclosure C.A. Sharp: None. K. Staniland: None. T. Cornell: Corporate appointments; T.C. is an employee of Abbvie, working as a Rheumatology Nurse Consultant. Shareholder/stock ownership; T. C. is a shareholder of shares in Abbvie. W.G. Dixon: Consultancies; WGD has received consultancy fees from Abbvie and Google, unrelated to this work.
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