Resource

Rheumatology consultations during COVID-19

Are you living with either RA or Adult JIA, currently a resident in the UK and have had at least one appointment with a member of your Rheumatology team since March 2020?

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The COVID-19 pandemic has seen organisations of all shapes, sizes and purposes, adapting to changes brought on by the virus. The National Health Service (NHS) is no different and has found itself undergoing dramatic changes, at pace, in its service provision. One of the major changes introduced very rapidly when the pandemic struck, was the move from face-to-face appointments to remote consultations by phone or video to reduce infection rates.

It seems clear that some of these changes are here to stay and rheumatology teams are now working hard to determine which patients require a face-to-face appointment and identifying those who are suitable for a remote consultation.  What is clear to NRAS is that we need to understand patients’ experiences of accessing rheumatology services during the last 15 months of the pandemic, and how they feel about remote consultations moving forward, to ensure their needs are met and care quality assured. 

This survey has been developed by the National Rheumatoid Arthritis Society (NRAS) in collaboration with clinicians and healthcare professionals from the University of Oxford and from the Oxford University Hospitals NHS Foundation Trust.

The National Rheumatoid Arthritis Society (NRAS)  are the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA).  Founded in 2001, NRAS provides truly expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions, their families and the health professionals who treat them.

Should you have any questions or concerns about this research please don’t hesitate to get in contact with us via our services administrator using the contact details below:

  • emmab@nras.org.uk
  • 01628 823524 and ask to speak with Emma Bartlett.

You have been able to access this survey through its advertisement on our social media channels (Including; HealthUnlocked, Facebook, Twitter, Instagram and LinkedIn). We are looking for those who are living with either Rheumatoid Arthritis (RA) or Adult Juvenile Idiopathic Arthritis (Adult JIA), over the age of 18, currently resident in the United Kingdom and who have had at least one appointment (be it remote, face-to-face, or a combination of both) with a member of their rheumatology team since March 2020.

Please note that if you are not over 18 years old, currently resident in the UK and living with RA or Adult JIA, we thank you for your interest but regret to inform you that you will be unable to participate in this study. Please keep an eye on our website (www.nras.org.uk) and social media channels for future research opportunities as we are always looking for research participants and eager to hear your views so we can ensure NRAS can continue to provide the best services we can.

In this survey you will be asked a series of questions beginning with some about you. The survey will then focus on your experiences of accessing rheumatology care including any remote consultations you may have had with your rheumatology team during the COVID-19 pandemic, as well as your opinions about remote consultations going forward.

Most questions will ask you to select one or more options from a selection of answer options, while others may ask you to use a slider to indicate your feelings or utilise an open text response where you can type your response. Please ensure you read all questions through thoroughly to ensure understanding before providing your response.

This survey will take approximately 25 minutes. Should you choose to proceed with this study, we encourage you to find a place where distractions will be minimised to complete this questionnaire.

We along with the University of Oxford and Oxford University Hospitals NHS Foundation Trust strongly believe that patient feedback is one of the most important tools we have and one which is not often utilised to full effect. Patients have a lot of power and we are committed collaboratively to improving the patient voice in rheumatological care.

Research such as this helps us to understand and better represent the interests of those living with these complex autoimmune conditions.  By better understanding those we serve, we are better able to create resources and services to meet the needs of this community.

All information you provide in this survey will be given anonymously and identifying features removed.

At the end of your participation you will be asked whether you would like to be involved in future research and share your views in a case study or focus group. Should you indicate that this is something you would like to do or may wish to do, then you will be asked to provide your full name and an email address. Please note that these details will only be used to contact you regarding future research opportunities and will not be linked in anyway to the responses you provide in this survey.

Data will be stored in a password protected file accessible and held by NRAS in line with current GDPR guidelines. On the 9th of August, anonymised responses will be sent to NRAS’ collaborators at the University of Oxford for analysis after which, data sets will be retained for up to 3 years for potential publication in report form. Following publication or after 3 years, raw datasets will be destroyed.

As data will have identifying features removed we ask that participants provide a unique identifier which you will be asked to quote in the event you choose to withdraw your data from the study. This unique identifier will be the only means of identifying your dataset and without it we will be unable to withdraw your dataset from the study.

Following the data collection stage of the study all individual datasets will have the unique identifier removed for analysis therefore participants will have until 16th of August 2021 to withdraw their data to allow time for processing and analysis.