Abstract
Background/Aims
COVID-19 has had significant impacts upon the delivery of rheumatology care in the UK. To date, there is little data specifically addressing how care has been disrupted and the impact upon patient attitudes and beliefs. Herein, we describe the results of a national study investigating how COVID-19 has; (1) reduced access to services; (2) altered treatment and drug monitoring; (3) impacted on clinic follow-up; (4) changed patient beliefs regarding ongoing/future care.
Methods
We conducted an online survey of patients attending rheumatology clinics in the UK. Questions were developed by clinicians with input from patient charities and four expert patients. The survey was hosted online between 8 September and 8 October 2020.
Results
In total, 2,054 patients completed the survey and the average number of rheumatic conditions each patient reported was 1.98±1.38 with the most common being; rheumatoid arthritis (48%), lupus (20%), Sjogren’s syndrome (19%), fibromyalgia (15%) and vasculitis (8%). More than half (57%) were told to shield, whilst 10% decided to shield of their own accord. Compared with before the pandemic, 57% felt it was difficult/very difficult to contact their rheumatologist. Regarding treatment, 15% reported difficulty obtaining their usual medication. Less than half (45%) of patients continued medication as previously and had no problem accessing it, although 21% said their usual drug monitoring had been discontinued. Overall, 3% stopped their treatment of their own accord. In all, 26% said their appointments in rheumatology clinics had been cancelled and they did not know when they would be seen again (4% reported no change in their outpatient follow-up). Prior to the pandemic, 13% of patients had received a telephone consultation, however, since the pandemic 60% had received one. Just 19% felt it was easy to be honest with their clinician via telephone. Only 33% were satisfied with the current level of care, 43% reported their rheumatology care was worse than pre-pandemic and 38% of patients felt they needed to see their rheumatologist but could not get an appointment. Over half (57%) of patients expressed worries about their future care. If offered an appointment in the next few months 66% said they would prefer it be face-to-face.
Conclusion
To our knowledge, this study is the largest survey of patient experiences of the COVID-19 pandemic under rheumatological care anywhere in the world. We found more than half of patients were told to shield and one-in-ten decided to shield without being directly told to do so. Less than half of patients maintained relatively good access to their usual medication without necessary monitoring in many cases. In particular, patients express high levels of concern about their future care. These high levels of disruption indicate the importance of maintaining routine rheumatology services during the ongoing pandemic.
Disclosure
C. Wincup: Grants/research support; CW has received research funding from Versus Arthritis, LUPUS UK and the British Society for Rheumatology. R. Amarnani: None. I. Giles: None.
New Labour, New Policies: Constructing a Discourse of Citizenship
