What really goes on ‘Behind the Smile’ of your patients living with RA?

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Many people with rheumatoid arthritis (RA) don’t feel their condition is understood by those around them, and this can have a negative impact on how the patient feels about their condition, according to a new survey, RA Matters, by Lilly.i

1,250 people with RA and 65 healthcare professionals were surveyed in the UK to identify what matters most to people with RA in terms of activities, work, personal relationships and aspirations. The survey revealed that many people with RA don’t feel the emotional (60%) or the physical (49%) impact of the disease is understood by those around them.i

Rheumatoid arthritis is a systemic autoimmune disease characterised by inflammation and the progressive destruction of joints.ii In the UK approximately 400,000 adults live with RA, with the disease affecting nearly three times as many women as men.iii,iv

Someone sitting on a bed

What really matters most to people living with RA?

The recent RA Matters survey by Lilly set out to fill a gap in the existing RA evidence base. 1,250 people with RA and 65 healthcare professionals were surveyed in the UK to identify what matters most to people with RA in terms of activities, work, personal relationships and aspirations.i The RA Matters survey revealed:

  • Many people with RA don’t feel the emotional (60%) or the physical (49%) impact of the disease is understood by those around themi
  • Over half of people with RA feel the disease negatively affects relationships in terms of inclusion in family or social events (55%) and quality of time spent with others (52%)i
  • 28% of people with RA said that their RA forced them to go on long-term leave or retire and nearly a quarter (23%) felt that their career progression had slowedi
  • 51% of people with RA found the difficulty of using their hands and the unpredictability of how they feel are the main challenges to carrying out worki
  • The three main barriers which prevented people with RA in the UK from undertaking everyday activities such as housework, exercising and washing/personal grooming were: fatigue (59%), aching and stiff joints (57%) and pain (55%). HCPs underestimated the impact of fatigue on patients by 10%i

When patients find it difficult to open up about how they really feel, then it can be hard for people around them to offer empathy or support. How can we help them explain the true impact of living with disease?

In partnership with the National Rheumatoid Arthritis Society (NRAS), Lilly has developed a two-part film called ‘Behind the Smile’ which follows ‘Jane’ through her RA journey and aims to encourage patients to speak out to those around them.

The ‘Behind the Smile’ films aim to raise awareness of the silent struggles, both physical and emotional, that people with RA face on a daily basis as they cope with pain, fatigue and stiff joints, and encourage honest conversation between patients and healthcare professionals about what really matters to the individual. To view the ‘Behind the Smile’ film, please click here.

“We wanted to show what goes on ‘behind the smile’ for someone with RA; what they may be thinking or feeling beneath the outward appearance of coping. The films encourage people with RA to open up to those around them including family and work colleagues and importantly with their doctor or nurse about how the disease truly impacts their everyday life. Prioritising what “matters” to the patient may lead to better long-term outcomes than just managing the symptoms of the disease.”

Clare Jacklin, Director of External Affairs, National Rheumatoid Arthritis Society (NRAS), UK

How can you encourage your patients to open up about the full impact of their RA?

It can be difficult to talk about patients’ feelings during a physical consultation. Lesley Tiffin, Rheumatology Specialist Nurse at The Newcastle upon Tyne Hospitals, explains how she uses the ‘Behind the Smile’ films within consultations to prompt her patients to talk more about their emotions and the full impact of life with RA:

Q. How easy or difficult do you think it is for nurses to understand the emotional and physical impact that RA has on patients’ lives?

A. During the limited time we have with our patients, it can be difficult to talk about all aspects of life with RA. Not all people want to talk about their feelings. I think it is important for us [nurses] to encourage patients to open up about their RA journey with their family, friends and with their healthcare professional. I find it easier to ask open questions to get my patients talking about what matters most to them and this often results in patients opening up about the full impact that RA has their life.

Q. What advice do you typically provide your patients with to encourage them to talk about the true impact of their RA?

A. When patients have recently been diagnosed, I direct them to useful resources, such as the NRAS website, so that they can find the most relevant information such as how to handle RA and work. I encourage them to be honest with those around them and ask for support if they need it. I will also let my patients know about support groups which may help them to learn how to manage the realities of life with RA and give them the opportunity to meet someone who truly understands what they are going through.

Q. How have you used the ‘Behind the Smile’ films within your consultations?

A. The films help me to show my patients that RA is an unpredictable and unseen condition, and reassure them it’s completely normal to feel the impact on your daily life.

Q. What is the most common response you have received from your patients after watching the ‘Behind the Smile’ films?

A. Some of my patients have really connected with Jane’s daily challenges of life with RA, with some patients even saying “that’s me.” This has even prompted them to share the film with friends and family in order to build a better understanding about their condition from loved ones. I would like to encourage more nurses to guide patients who are feeling overwhelmed by their RA to watch this film, as it may encourage them to talk about their personal challenges and start managing them.

November 2017

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