RA Matters to Me: The Stories Behind the Survey Data

Today’s guest blog comes from Neil Betteridge, Independent Patient Representative.

Today is one of the most important dates on the calendar for me and for millions around the world who live with some form of rheumatic disease: it is World Arthritis Day (WAD).

The aim of WAD is to raise awareness of the huge impact these diseases can have on individuals, families and society. But, also, to highlight the positive things which can be done to address and reduce this impact, such as the importance of early diagnosis and timely access to treatment.1

Amongst this family of conditions, rheumatoid arthritis (RA) is one of the most severe, yet often one of the least recognised or understood by the public. RA is a long-term condition that causes inflammation, stiffness, pain and extreme fatigue. Left untreated, it can cause joints to lose their shape and alignment and lead to permanent disability. It is an autoimmune condition, which means that the immune system that normally fights infection, mistakenly attacks healthy joint tissue causing damage. 2

I have been privileged to occupy professional and voluntary roles in my career, representing the interests of people with rheumatic and musculoskeletal diseases and through this, I became involved with Lilly’s RA Matters campaign. Its goal is to challenge many of the preconceptions around the disease and elevate what matters most to those people living with the disease 24/7.

In 2016, Lilly launched their first RA Matters survey, gathering responses from over 6,200 RA patients from eight countries about what matters most to them. The findings highlighted areas that often affect the lives of people with RA, but which are not always the first things to be discussed in the clinic such as physical activities, personal relationships, aspirations and work. For example, 40% reported that RA had a negative impact on their relationship with a spouse or partner and over two-thirds believed that more could be done to support them at work.

The RA Matters survey findings begin to highlight the tremendous impact that this condition has on lives. As I can attest, RA really does matter to the people living with this condition, but sometimes in ways that are misunderstood or neglected by others. Whilst the results are both interesting and compelling, it is important to remember that there is a person behind every single number.

To emphasise the impact of RA Matters, Lilly decided to bring to life the data from their survey. Through a series of short videos entitled ‘RA Matters to Me’, Lilly showcased the personal stories of a number of people living with RA and asked them: when did you last ask what matters most to you?

I’d like to highlight a couple of the quotes that really stood out to me, bringing life to the statistics and hopefully giving an insight into what it is like to live with the condition:

"I always dream of doing things I did before, that I can’t do anymore." – Celine, France

"It doesn't matter how much sleep you get. It doesn't matter how much rest, how much you take care of yourself. You just feel like you can never recharge your battery." – Dawn, Canada

Going forward, we need to not only raise awareness of the need for early diagnosis and treatment, but for individualising treatment and management strategies based on what matters most to each person.

It can be all too easy for busy healthcare professionals to focus on clinical symptoms such as disease activity scores. The patient they are treating on the other hand may have differing priorities, such as retaining their work or resuming a hobby. 

I believe that by addressing patients’ hopes for the future as well as their physical symptoms, a new era for RA management is dawning. One where those living with RA can work in close partnership with their healthcare professionals to help shape, and play their part in delivering, clinical care and ongoing support focused on their own individual needs, wishes and aspirations.

That, after all, is surely what matters most.



Footnotes

(1) World Arthritis Day. Our Campaign. Available at: http://www.worldarthritisday.org/our-campaign. Last accessed August 2018

(2) National Rheumatoid Arthritis Society. For Journalists. Available at: https://www.nras.org.uk/for-journalists. Last accessed August 2018. 

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