ABSTRACT
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.
ABSTRACT
Background: COVID-19 has catalysed the transformation of healthcare services, with outpatient services increasingly dependent upon remote models of care. Healthcare professionals now have to make clinical assessments based on remote patient examinations. The number of tender and swollen joints a patient has drives decision-making in RA, making it particularly important that people with RA and HCPs have a shared understanding of these examinations. Even before remote consultations became widespread, long gaps between clinic visits create challenges in enabling HCPs to form an accurate picture of disease activity over time. The REMORA (REmote MOnitoring of Rheumatoid Arthritis) app aims to address this issue by asking people with RA to track disease activity, including counting the number of tender or swollen joints, weekly(1). Data are integrated into the electronic patient record for clinicians to access with patients during clinical consultations. As part of the supporting materials for the REMORA app, we planned to develop a video to train people with RA how to examine their own joints. This video may now help meet the need created by the recent expansion in remote consultations. Objectives: To describe the co-production, implementation and evaluation of a video to train patients how to examine their own joints. Methods: The need for the video to fill a current gap in patient education was identified by the REMORA patient and public involvement and engagement (PPIE) group. A core working group comprising the PPIE lead, a nurse consultant, rheumatology clinicians, project and communications managers was formed. A storyboard was drafted and feedback gained from the PPIE group and wider REMORA team. Images were sourced from licenced suppliers, or co-developed with the PPIE group where necessary. No ethical approval was required as the PPIE group lead was acting as an equal member of the research term. Written informed consent was gained from video participants. Filming took place between two national lockdowns during the COVID-19 pandemic, providing a challenge to ensure social distancing and requiring the use of masks. Results: A 15 minute video to train people with RA to self-examine for tender and swollen joints was developed. An introduction outlining the rationale behind self-examination is followed by a nurse consultant coaching an RA patient in individual joint self-examination. Shoulders, elbows, wrists, metacarpophalangeal joints, proximal interphalangeal joints and knees are included, all of which are counted in disease activity scores. Early feedback from stakeholders has been overwhelmingly positive. The video will be publicly available on YouTube from February 2021. A survey of patients and HCPs aims to obtain more formal feedback on the video, with a view to a further iteration, if required. Leading national organisations in rheumatology will promote the video, as it supports national programmes including the British Society for Rheumatology national early inflammatory arthritis audit and ePROMS (electronic patient report outcome measure) platform, both of which include entry of patient reported tender and swollen joint counts. Conclusion: This video was co-designed by people with RA, aiming to support self-examination of tender and swollen joint counts. Hits on YouTube and survey responses will help assess its impact. Evaluation to assess whether the video affects patients' ability to self-examine for tender and swollen joints before and after watching is planned. We hope the video will support remote consultations and help people with arthritis to better understand and self-manage their arthritis, and to have shared decision making conversations with their clinicians.