Smartphone apps may aid home rheumatoid arthritis monitoring

BIRMINGHAM, ENGLAND – Researchers in the United Kingdom are looking at how smartphone technology can help to improve how patients with rheumatoid arthritis (RA) monitor their disease at home and between clinic visits.

As part of the Remote Monitoring of Rheumatoid Arthritis (REMORA) study, a team led by Will Dixon, MD, at the University of Manchester (England), has developed an app that links directly into electronic patient records to help collect information from patients between their regular clinic visits for both self-monitoring and research purposes.

“REMORA is motivated by the need to learn about what happens to patients in between clinic visits, and that’s both for clinical care and for research but also to have the opportunity to support self-management, so we’ve designed the study to meet those three needs,” Dr. Dixon, professor and chair of digital epidemiology in Manchester University’s division of musculoskeletal and dermatological sciences, said in an interview at the British Society for Rheumatology annual conference.

There were three phases to the REMORA project, the first being qualitative research to understand which outcome measures should be included in the app. To find out, the team worked with clinicians, researchers, and patients with RA to determine which patient-reported outcomes should be included. The second phase involved the development of a beta-version of the app, again with patients giving their feedback on how it should be designed. The third and final phase tested the app in a real-life setting to see how data collected compared with that recalled during clinic visits and how it linked into patients’ individual medical records.

Dr. Dixon explained that when patients are seen every few months they might forget or underplay events that could have significance for their clinical care. Use of the beta version of the app between clinic consultations in the study proved there was recall error.

“In the consultation, we’d ask people how they’d been doing before looking at the graphs in the app, and even people who had said they’d been absolutely fine since they’d last been seen, even in the previous month of beta-testing, have signs that they could have been [having] pain flares,” Dr. Dixon said. This sort of prospective data collection by the app could enable discussion of any irregularities even if more stoic patients reported having no problems.

Sara Freeman/Frontline Medical News

During an abstract presentation at the meeting, Lynn Austin, PhD, of the Center for Primary Care at the University of Manchester, talked about the specific electronic patient-reported outcomes (ePROs) that ended up in the beta version of the app. The various stakeholders were asked not only what ePROs to record, but also when these should be recorded and how they should be recorded, such as by rating on a numeric scale or by free text entry.

The responses showed that there were some similarities in the information that clinicians and researchers and patients want to record, but also some key differences.

All groups wanted the app to be able to collect information about possible changes in disease activity (indicated by levels of pain, joint swelling, or disease flares) and the impact that these had on physical and emotional well-being.

Patients were open to regular monitoring, if not too burdensome, but would prefer to note things down “when something happened.” On the other hand, clinicians and researchers wanted regularity and consistency in the monitoring, although they saw the benefit of a more “ad hoc” approach.

Clinicians and researchers felt no need to “reinvent the wheel” and indicated that existing validated tools could be used to collect the information. Conversely, patients preferred a more pictorial or free-text approach, although were aware of some standardized tools in common use.

Daily, weekly, and monthly question sets were developed, with a diary that uses emojis to indicate how people using the app are feeling and a free-text area to allow them to note down any significant health events or thoughts.

Pilot testing of the app has been done in one hospital so far, but it was so well received that patients did not want to have to stop using it at the end of the study, Dr. Austin said in an interview.

Linking into the patient records is a unique approach, and if it proves successful in RA, it could be rolled out across the country’s National Health Service (NHS) and perhaps even into other chronic conditions where self-monitoring is needed.

“We all know we have a limited time in our consultations, so we need to develop a system whereby a clinician, in the 15 minutes they have got for a follow-up appointment, can set somebody up with an ‘app prescription,’ ” Dr. Dixon said. “We’re looking to really develop a blueprint for how apps can successfully connect into the NHS,” Dr. Dixon said. At present, however, the next step is to try to scale up the app for use in several hospitals within an area rather than roll it out nationally, he said.