Patient Experience of Remote Healthcare during the Pandemic in Rheumatoid Arthritis and Adult Juvenile Idiopathic Arthritis

ABSTRACT

Background/Aims COVID-19 challenged traditional care models and necessitated introduction of remote consultations. We wanted to understand the experiences of people with rheumatoid arthritis (RA)/adult juvenile idiopathic arthritis (AJIA) on accessing healthcare remotely, and how well people understood their condition and treatment. Methods This collaborative work between the National Rheumatoid Arthritis Society (NRAS) and clinicians in Oxford led to the development of an electronic questionnaire that was disseminated in July 2021 for four weeks through e-newsletters and all NRAS social media platforms. Those living in the UK with RA and AJIA aged 18 and over were eligible. Analyses of data were performed in Microsoft Excel and IBM SPSSv28. Results We analysed 316 responses. There was a middle-aged (ages 46 to 54, 54.1%, n=171), Caucasian (97.5%, n=306), female (92.4%, n=292) preponderance. Most had RA (93%, n=294) followed by another inflammatory arthritis (4.1%, n=13) and AJIA (2.8%, n=9). The majority had their condition for >10 years (43.4%, n=137) but some were diagnosed <12 months ago (3.2%, n=10). Two thirds of participants (66.5%, n=210) did not know their DAS28 score. Of the remaining third, the most commonly reported measure was moderate disease activity (12%, n=38). Those with higher self-reported DAS28 scores were using analgesia more regularly (p<0.01) but we found no difference in NSAID, DMARD or steroid use. Age did not influence steroid usage (p=0.35), but those who had their condition for longer used more steroids and regular analgesia. Only 33.9% (n=107) of responders felt their condition had been managed adequately in the pandemic, with more reporting poor status (40.8%, n=129) rather than good (16.8%, n=53). Those living in the South of England reported statistically better disease control than those from the North, despite having more virtual assessments (p=0.02). Travelling and fear of Covid appeared more important than consultation skills. Just over a fifth (20.3%, n=64) felt greater focus should be given to patient concerns. Of the 9.1% of patients (n=29) with a new diagnosis made during the pandemic, 24.1% (n=7) unable to book a GP appointment easily. Patients experienced a median symptom time of 4-10 weeks before consulting GPs. Once assessed, 31% (n=9) were referred immediately while the median time was 4-8 weeks. We found 58.6% (n=17) of patients received their diagnosis within their initial rheumatology consultation and 76.5% (n=13) of these started a DMARD immediately. Conclusion Despite a greater emphasis on patient education and PROMs influencing clinical decision-making, it is staggering that two-thirds did not know their DAS28 score. Analgesia and steroid use were common in patients with well-established disease which remains a concern. Accessing appointments was a significant barrier to patients and delays in care were experienced at every step in the NHS management pathways. Remote consultations need greater emphasis on patient concerns.