15 June 2021
Patient-reported outcome measures (PROMS) are vital to help improve care, monitor patients’ progress and encourage shared decision-making. In 2020 we developed the ePROMS platform, a way for all rheumatology patients to input their disease activity online. As soon as they're submitted, the patient’s clinical team can view them. It was created as a direct response to the impact of COVID-19 on rheumatology services across the UK.
We spoke to physiotherapists Jane Brazendale and Carol Greenall from Minerva Health Centre in Preston. Their team's recruited more than 230 patients to the platform since it launched in 2020.
How did you become involved with ePROMs?
Jane: As physios we’ve always been involved with PROMs, so it’s very familiar as a concept. Our lead consultant, Dr Lizzy MacPhie, mentioned BSR was launching its electronic platform and as a multidisciplinary team we decided it was a positive to go online. We felt our axial spondyloarthritis (AS) patients were an ideal cohort to try first, as they are used to filling in hard copies in clinic.
Why did you think it was a good idea?
Jane: Because of COVID-19, most of our appointments have been online or over the telephone, so sending out an electronic PROM made perfect sense. It also complements the NHS’s long-term plan to digitise.
Carol: When we were asking questions to patients over the phone, you can unintentionally be quite leading. When patients are answering questions online, not only is it more time efficient but it’s probably more accurate.
How does the ePROMs system work?
Carol: We talk to the patient first and get their consent, then we register them on the system. We chose this cohort of patients because they are used to filling in the BASDAI questionnaire.
Jane: We have a dedicated AS clinic and we have the ePROMs platform open when we speak to the patient. It's just like having a hard copy. Seeing how a patient has scored helps to drive the theme of the consultation, because you're listening to the patient and addressing their symptoms. Rather than a list of standard questions, you’re being led by their priorities.
What's the patient feedback been like?
Carol: Patients like filling in the questionnaire at home in their own time. They have time to consider their answers, which we can then pick up in the consultation.
Jane: When I think back to pre-COVID-19, people filled in questionnaires in the waiting room when it was often quite busy. Doing it from their homes means patients aren’t rushed, give greater consideration to their answers and I believe they are more honest.
Find out more about our ePROMs platform
How has it changed the service you offer?
Jane: The system produces graphs, so you know if a patient is stable. This gives us confidence to do an online or telephone follow-up consultation. For those patients who are flaring, we can direct them to a face-to-face consultation to unpick the issues. So overall, it helps us to decide the type of consultation going forward.
Carol: Before we were using some of our appointment time for the patient to complete the PROMs. It now feels like it’s more patient-centred as that part has already been done and it can help lead the appointment.
What are your top tips for other units?
Carol: It’s important to have that conversation with the patient and I feel like I’ve got better at explaining it over time, so persevere. It’s also important to explain it in a way that patients will understand, for example we talk to our AS patients about it being a BASDAI rather than a PROM. Our patients are used to getting emails from us, but we had to advise them that emails would come from BSR so that they’d know what it was and to open it.
What's your advice to other units thinking about taking part?
Carol: Just give it a go! Once you’ve started, you’ll realise it’s quite easy to do. It can be daunting initially when you know you’ve got a busy clinic, but once patients are registered, you’re good to go.
Jane: It’s a good project to give your physio students. In our physio standards of practice, we’re expected to use PROMs, so it links very nicely with a student project, and it encourages them to get used to having those kinds of conversations with patients.
What’s next for you with ePROMs?
Carol: We’ve started working with our rheumatoid arthritis patients. The DAS28 was previously completed for the patient in clinic, so for the patient to do this for themselves is new concept and will take time to master. But we’ve learnt so much already that we can carry ePROMs forward to other patient groups.