PARIS — The ability of patients with multiple sclerosis (MS) to monitor their own disease with use of web-based algorithms incorporating various patient outcome measures is becoming a reality.
Two different approaches to this self-monitoring were discussed here at a “Hot Topic” session on the first day of 7th Joint European Committee for Treatment and Research in Multiple Sclerosis-Americas Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS-ACTRIMS) 2017 this week.
Gavin Giovannoni, MD, professor of neurology at Barts and the London School of Medicine, United Kingdom, has pioneered the development of a website where patients can undergo online tests and questionnaires to monitor various symptoms of MS.
A similar approach has been developed in the United States under the leadership of Jay Alberts, PhD, Cleveland Clinic, Ohio.
Dr Giovannoni said he wanted to empower patients to take a proactive role in their disease.
“We are always asking patients to fill in questionnaires but it is one-way traffic, and this does not motivate patients,” he said. “We need to provide feedback. There is a revolution occurring in medicine where patients are empowered to make decisions about their own care. This is happening in a major way in fields such as diabetes, anticoagulation, and blood pressure management. It can also happen in MS.”
“If I had a disease like MS, I would want to know if I was stable, improving, or deteriorating,” he added. “We conducted a survey to ask our patients this, and the vast majority liked the idea of self- monitoring.”
“Self-monitoring changes the dynamic. It gets patients to be proactive in demanding certain treatments. My motivation for this is to empower patients, but we’ve also found out that it is a very powerful way for monitoring and conducting innovative trials. I’m not saying it will replace the current trial paradigm, but it will definitely supplement it.”
Clinic Speak web site
Dr Giovannoni’s web site — called Clinic Speak — currently has three tests available for patients to access. These are an assessment of the Expanded Disability Status Scale (to measure disability) via a questionnaire, the timed 25-foot walk test (to measure walking speed), and the 9-hole peg test (to measure hand function).
“It is important to use validated measures and to anchor them to existing outcome measures that we use in clinical practice,” he explained.
He is planning to add two additional tests soon — a cognition test (the Symbol Digit Modalities Test) and a quality-of-life assessment — both of which will be a standardized questionnaire.
Access to the website and all the tests are free, although the 9-hole peg test requires a piece of equipment. Dr Giovannoni has made a cardboard version of this test that can be bought for €10 on the website; there are also instructions on how patients can make one themselves using wood or plastic building blocks.
These self-monitoring tests will eventually be combined into one app that will track disease over time. Dr Giovannoni said they are suitable for all patients with MS, and he recommends they compete the tests every 3 months. “We are building into the platform advice on what to do with the results, and there will be another whole app on self-management.”
He acknowledges some resistance from medical professionals, but he says the tests are not meant to take the place of medical intervention but rather to augment it. “We are not trying to take over the medical management of the disease. We are just trying to empower patients with quality information they need to help make decisions about their care.”
If patients are deteriorating, they would be advised to make an appointment to see their neurologist, he said. “The information would then be considered in conjunction with imaging data used to make decisions about drug treatment and other clinical care.”
He noted that several similar online initiatives are already available, funded by various pharmaceutical companies, but Dr Giovannoni’s website does not have pharmaceutical company backing. His project is initially being funded by a digital health grant from the Wellcome Trust. He says he has no financial interest in it and, if it is commercialized, it will be through a nonprofit venture.
Eventually he wants to make the platform interactive. “The most successful apps are those which enable social relationships with other people. We are social animals, and creating a platform where patients can interact with each other and share their results will create a carrot and motivation to access the best care,” he said.
|Brief demonstration of MSPT. Richard Rudick. Published Youtube on Mar 26, 2014|
MS Performance Test
The approach developed by Dr Alberts and colleagues — known as the MS Performance Test — is slightly different in that patients undergo the tests while at the hospital. The information is entered straight into their electronic health records and will be discussed with the clinician.
“With our system, patients undergo self-testing before they see the neurologist,” Dr Alberts explained to Medscape Medical News. “This is not really about technology; it’s more about people and integrating technology into clinical work flows to enhance clinical evaluation, work flow, and patient experience.”
“The patient and provider will be using the same data and be on the same page,” he said. “The neurologist can actually look at the patient’s data, which will automatically be shared with them and [they will] see instantly which functions are improving or deteriorating.”
Dr Alberts explained that every patient at the Cleveland Clinic who has a diagnosis of MS takes the exact same evaluation test, which they do themselves before their appointment. The tests measure cognition, hand function, visual contrast sensitivity, walking speed, and some patient-reported outcomes (such as depression). That information is immediately transmitted into the patient’s electronic health record and then the physician and the patient can review that information together.
“Usually in waiting rooms patients sit around and read magazines,” he elaborated. “But this is the waiting room of the future. The platform of tests is integrated into the clinical appointment. Everyone does it and that allows us to have systemic objective data and rapidly include that in clinical decision making. Patients may have to be talked through how to do the tests the first time but actually they should be able to do them themselves.”
“Here we’re doing self-administration,” he added. “Nurses and medical assistants are already overloaded. We can’t keep asking them to do more. That’s where having these tests being self-administered becomes critical.”
He noted that while some of these tests are already being done in the clinic, this is not universally the case. “Some clinicians get their patients to do the 9-hole peg test (to measure hand function), others may go for the 25-foot walk test. Few doctors would do all the tests all the time. These are pieces and parts that people are interested in for evaluating function. We are bringing them together on a platform technology that is friendly to the clinical workflow.”
Patients would undergo imaging separately, and “we are connecting the imaging data with these behavioral data so we can now better understand the relationship between lesions seen on MRI and cognitive and motor function,” Dr Alberts said.
What differs from Dr Giovannoni’s approach is that with the MS Performance Test, the patients do not keep the data themselves at present.
“In the future it is possible that these measures may be available as an app that the patient could do themselves at home,” Dr Alberts commented. “Before we do that we want to ensure that what we are measuring is exactly the same as what we are measuring in the clinic. We have been through a painstaking process to validate all the measures we are gathering. But an app may be the next phase.”
So far, the platform is being used at 10 different centers in association with the MS Paths initiative — 8 in the United States and 2 in Europe — and there are plans to expand its use further.
The platform has been developed within the Cleveland Clinic and is not a commercial enterprise at present, but Dr Alberts noted that “Biogen is now partnering with us to help push it out into different centers to gather information for the MS Paths project.”
He added that the tests were all compatible with the “Smart on FHIR” (Fast Healthcare Interoperability Resources) approach, which has been developed to standardize the way data is stored on electronic health records. This will enable the data collected from different centers to be analyzed centrally.
“This will enable us to study many questions, such as which values are associated with clinical outcomes and which factors affect disease progression or the effect of various medications.”
|7th Joint European Committee for Treatment and Research in Multiple Sclerosis-Americas Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS-ACTRIMS) 2017. Abstracts 77 and 78. Presented October 25, 2017.|
The Multiple Sclerosis Performance Test (MSPT): An iPad-Based Disability Assessment Tool, Richard A. Rudick, Deborah Miller, Francois Bethoux, Stephen M. Rao, Jar-Chi Lee, Darlene Stough, Christine Reece, David Schindler, Bernadett Mamone, and Jay Alberts. J Vis Exp. 2014; (88): 51318. Published online 2014 Jun 30. doi: 10.3791/51318
Cleveland Clinic Turns iPad Into Powerful Multiple Sclerosis Assessment Tool in medGadget