Living Like You | What does PRO mean?

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Monitoring disease progressions is an incredibly important part of living with Multiple Sclerosis (MS). Keeping track of changes can help to understand how treatment is working and highlight when to consider adapting the treatment approach.

Several scales exist that can help us to measure MS and the impact it has on the body, for example, you may be familiar with the Expanded Disability Status Scale (EDSS) to name just one. But the variable nature of MS means that it can be hard to measure the full impact of the disease and what it means to live with. In response to this, recently, we’ve seen a welcome shift towards putting patients at the centre of research and care, which is where patient reported outcomes, or PROs, come in.

A patient reported outcome refers to the patient’s experience of a disease or its treatment. A PRO is directly reported by a patient and can be related to their health, quality of life, ability to perform normal daily activities, their healthcare, or their treatment.1

One area in which PROs are playing an increasingly prominent role is in the development of new MS treatments. Including PROs in clinical trials – studies that investigate the safety and efficacy of potential new treatments – ensures that the outcomes that matter most to patients are considered when deciding if a new treatment is effective or not. As an example, the size of an MS lesion is an important clinical measure of disease activity, but does not capture the experience of a person with MS, for whom cognitive symptoms or increased disability may have the biggest impact on their life. A well-designed study should include both clinical measures and PROs in order to provide a full picture of the impact a treatment has on disease progression and a patient’s day-to-day life. 

Living with the symptoms of MS, such as cognitive symptoms or communication impairments, can be confusing at the best of times and may also make it harder to accurately explain the impact that MS has on your life in order to feed into PROs.2 To help overcome this, a new initiative called the Patient Reported Outcomes for MS (PROMS), led by Novartis, has been launched. It brings together important stakeholders, including people from the MS community, healthcare workers, researchers, and the pharmaceutical industry to support patients to input their experiences into research, clinical trials, and the design of healthcare systems. The initiative focuses on the symptoms and aspects of living with MS that matter most to patients. PROMs advocate for a set of standardized PROs to be used in the development of therapies and to promote research to develop new PROs that continue to meet the needs of those with MS.3

With PROs playing a bigger role in decision-making in healthcare systems and clinical trial outcomes, more information should be available to help determine the best treatment option for each individual with MS. It should also help doctors to better understand the impact of living with MS and the options available that will support your specific needs.

What can you do now to help embed PROs into your care? Try discussing how MS is impacting your life with your doctor, sharing your symptoms, the areas of your life that it has the biggest impact such as on your hobbies or day-to-day life, and more broadly how this makes you feel (our Living Like You Bloggers share some insights into how MS impacts their lives here and here). With more information about your disease, including your experience and clinical measures, together you and your doctor can determine the best treatment options available for you.

To help you in monitoring your symptoms over time and how they impact your life, you can try keeping a diary, finding an app that helps you track your symptoms such as Cleo, iCompanion, MyMSTeam or BelongMS, or use the YourMS Questionnaire. Remember to take the notes you make to your next appointment to discuss with your doctor.

Brichetto G, Zaratin P. Measuring outcomes that matter most to people with multiple sclerosis: the role of patient-reported outcomes. Current Opinion in Neurology. 2020; 33(3): 295-299.

2 Patient-reported outcomes in the spotlight. The Lancet Neurology. 2019; 18(11): 981.

European Charcot Foundation. PROMS. Available at: Accessed: May 2021.

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