Myositis and remote patient monitoring – Dr Alexander Oldroyd speaks to Arthritis Digest
Arthritis Digest is a magazine for people with arthritis that highlights the latest relevant research and reviews topical issues.
Continuing regular contributions from our BRC Musculoskeletal (MSK) theme researchers, Dr Alexander Oldroyd, MSK researcher and Academic Clinical Lecturer at The University of Manchester, discusses how technology could potentially help predict flares in patients with the autoimmune condition, myositis.
Not everyone is familiar with many aspects of new technology. It changes so fast that even the moderately savvy can feel left behind. But its potential is breathtaking – and potentially life changing.
The development of smartphone apps has, for example, opened up opportunities for researchers to collect data from people with healthcare conditions. This enables a greater depth of understanding, and ultimately better ways to tackle healthcare conditions and enhance daily living.
I look after people with myositis, a long-term autoimmune condition that most commonly causes muscle inflammation, potentially leading to weakness and inability to carry out day to day activities. Inflammation of other organs, such as the skin and lungs, can also occur.
Myositis can begin at any time from childhood all the way through to older ages. Although there is currently no cure for myositis, we have many treatments that suppress the immune system and keep the condition under control, allowing people to maintain independence.
The current challenge
I often see patients suffering a flare of myositis, where sudden increases of inflammation occur, leading to fatigue, weakness and pain, along with other potential symptoms. I realised that there is currently no way to predict or quickly identify a myositis flare, which risks the development of irreversible organ damage from uncontrolled inflammation.
The potential solution
In recent years, researchers and clinicians have been developing remote patient monitoring methods that allow flare detection in a number of chronic conditions, such as inflammatory bowel disease or rheumatoid arthritis. One method of remote patient monitoring involves people giving daily information or answering questions on their flares, using smartphone apps. Clinicians and researchers can then use this information to detect increases in symptoms, which may be caused by a flare.
Other studies have involved asking people to wear ‘sensors’ (small devices that can be worn or attached to a person’s body) to identify changes in walking pattern or speed to detect changes, which could allow flare detection.
New research
A recent study – The Myositis Physical Activity Device (MyoPAD) – aimed to investigate if remote patient monitoring could be used to detect the occurrence of myositis flares. A total of 20 adults with myositis helped to design the study and smartphone app, including its format, questions to be included, and interactivity.
For more than three months each participant answered daily questions about their symptoms via the app, while continuously wearing a small sensor inside an adhesive patch on the side of their leg.
More about the MyoPAD study
The Myositis Physical Activity Device (MyoPAD) study – funded by Versus Arthritis and The National Institute for Health and Care Research (NIHR) Manchester Biomedical Research Centre (BRC) – aimed to investigate if remote patient monitoring could be used to detect the occurrence of myositis flares. Dr Alexander Oldroyd worked as Principal Investigator for the study alongside Professor Hector Chinoy and Professor William Dixon, and in collaboration with the Manchester Myositis Research Group and The University of Manchester’s Centre for Epidemiology Versus Arthritis.
MyoPAD was designed alongside industry partners from ZiteLab and SENS Innovation. ZiteLab, which specialise in app development for patient data collection and patient registries, led the app development. SENS Innovation, which specialise in wearable sensor development for gait/physical activity measurement, led sensor-based aspects of the study.
Key findings
A huge amount of data was collected during the study; 21,709 responses to questions and 40,145 hours of sensor data. Initial analysis has allowed us – for the first time – to demonstrate the ability to detect myositis flares, and investigate the links between symptoms and flares, confirming that increased symptom levels are associated with flares.
We have also been able to investigate the impact of flares upon employment, which has never been done before in myositis. Analysis indicates that flares are associated with fewer hours worked and reduced work productivity illustrating the day-to-day impact of myositis.
Sensor data analysis suggests that walking pattern changes with flares and changes of myositis ‘disease activity’.
Impact of results
The results of the study show that remote patient monitoring, using an app and wearable sensor, can potentially allow the identification of myositis flares.
This means that in the future, remote patient monitoring could be used to:
- allow clinicians to more accurately assess how active someone’s myositis has been since they were last reviewed
- help a patient better convey to their clinician how their myositis has impacted them, for example, by using daily symptom data
- allow a clinician to assess how well a new treatment has helped an individual patient
- identify flare occurrence, thus allowing instigation of treatment that could stop the flare in its tracks. This might help reduce the duration and negative impact of flares
- improve the use of specialist myositis clinic appointments. Daily symptom and sensor data could be used to identify which patients need to be seen face-to-face and who could be seen virtually, which will be beneficial for patients and clinicians alike
- give researchers a new method with which to carry out myositis research. For example, drug trials could be enhanced by remote patient monitoring; more accurate measurement of a drug’s effectiveness on an individual patient could results in new treatments for patients.
Future plans
We plan launch to the next phase of the work later in 2022. A larger group of people will be asked to answer daily questions via the app and continuously wear a sensor for a longer period of time.
Case Study – Diagnosis: Dermatomyositis and Interstitial Lung Disease
Clive Nayler, 52 years old, Worcestershire
My symptoms of dermatomyositis began in 2018, with painful, bloated hands and toes, with skin that hardened, peeled and split continuously. My arm and leg strength reduced, resulting in rapid reduction in mobility. My GP had suggested the possibility of dermatomyositis and I was referred to a dermatologist and consequently to rheumatology and lung consultants.
My symptoms have been variable and change frequently between clinic appointments. I have frequently found it challenging to easily and accurately convey symptom variation to any of the doctors looking after me.
I was delighted to take part in the MyoPAD study. Participation was straightforward and everything was explained to me before and during the recruitment appointment. Active participation was required; I needed to enter questionnaire answers every day and continuously wear the sensor. This didn’t feel onerous and actually made it feel that I was a vital part of the study.
My results showed how my symptoms and walking pattern changed over the three months. It would be great to be able to review this sort of data with my doctors during routine clinic appointments. The results highlighted the multi-factor elements of this rare disease in action and hopefully will lead to improved management of the symptoms.