Psoriasis is a chronic and systemic inflammatory skin disorder. It is immune-mediated, meaning it is caused by an immune reaction in the body. It is not contagious.4
When a person has psoriasis, their skin replacement process speeds up, taking just a few days to replace skin cells that usually take 21-28 days. This abundance of skin cells builds up to form raised ‘plaques’ on the skin, which can also be flaky, scaly, red on caucasian skin, darker patches on darker skin tones, and itchy.5 The most common form of the disease is plaque psoriasis with approximately 80% of the overall patient population affected.6,7
Psoriasis occurs nearly equally in men and women.1 Symptoms can occur early on in life (in some cases, from birth) but there are two peaks which are most common: from the late teens to early thirties, and between the ages of around 50 and 60.3 Despite this, the condition can be complicated to diagnose and it can take an average of two years after symptom onset to reach a clear diagnosis.1
We know that around a third of people living with psoriasis may go on to develop psoriatic arthritis, which affects the body in different ways to psoriasis and often causes pain, as well as swelling and tenderness particularly around the joints.8,9
People with psoriatic arthritis can often experience skin symptoms for up to 10 years before the onset of joint symptoms. It is clear that the two conditions are closely connected, and if left untreated, psoriatic arthritis can have a severe impact on mobility and physical function.6,7
Together, these two conditions are known to affect approximately 19 million people in Europe; psoriasis alone makes up over 14 million of these cases. They are known to have a debilitating impact on the lives of people living with them – both emotionally and physically. The symptoms of psoriasis and psoriatic arthritis are complex, and these diseases are known to manifest themselves in several ways and at several parts of the body, which makes the management of these conditions all the more complex.10,11
Psoriasis lesions can often be found on areas close to the joints such as the elbows and knees but can also appear on the scalp.8 These lesions often extend to the forehead, neck and ears.12 Even in people who are being treated for psoriasis, scalp symptoms are known to persist in 84% of cases, and are difficult to manage in a number of patients.13
Nail psoriasis affects up to 50% of people with psoriasis and up to 90% of people living with psoriatic arthritis, so it is a very common manifestation. Like symptoms on the scalp it can be very challenging to manage and can severely restrict daily activities.14,15,16,17
Beyond these visible manifestations there are other physical factors which can dramatically impact the patient experience day-to-day. Up to 84% of people with psoriasis experience itching, and over a third of patients actually cite itch as the most important factor contributing to their disease. This is compared with only one in five patients who name flaking as their most bothersome symptom.1,18
The added complication of psoriatic arthritis can add many additional physical factors into the mix for people with psoriasis. It is common for joints to become swollen and tender leading to significant disability; 89% of patients with psoriatic arthritis say they feel pain in their joints.1
Two distinct physical symptoms of psoriatic arthritis are dactylitis (enlargement of the fingers, commonly referred to as “sausage fingers”) and enthesitis (inflammation at sites where tendons or ligaments insert into bone). A substantial number – 41% - of people living with psoriatic arthritis suffer from dactylitis in the fingers and also the toes, and enthesitis is known to affect up to 71% of patients. 32% of psoriatic arthritis patients with enthesitis have difficulty walking outdoors, so it is common for these issues to negatively impact day-to-day life.7,19,20,21,22
Diagnosing psoriatic arthritis can be a tricky process because its symptoms frequently mimic those of other forms of inflammatory arthritis, such as rheumatoid arthritis (RA) and gout. It can also be confused with osteoarthritis (OA), the most common form of arthritis.23
People living with conditions like psoriasis and psoriatic arthritis also face increased risks for other conditions, including cardiovascular complications. People with severe psoriasis are 70% more likely to experience a heart attack or heart disease compared with the general population – this level of risk increases along with the severity of psoriasis.24,25
While conditions like psoriasis and psoriatic arthritis are not fatal, they do have the power to significantly impact the lives of people living with them, from the debilitating physical disability they can cause, to the emotional and psychological consequences of day to day life.
75% of people living with psoriasis believe it has a negative impact on their quality of life and 83% of patients with psoriasis actively conceal the visible signs of their disease. Psoriasis is known to cause social isolation in many people and a quarter of those with the condition suffer from depression. Over 80% of psoriasis patients experience self-consciousness, anger, frustration, helplessness or embarrassment.1,26,27
40% of people with psoriasis suffer from work-related disability, and roughly the same numbers (39%) of psoriatic arthritis patients do the same. Psoriasis can also have a significant impact on unemployment.28,29
For those suffering with psoriasis and psoriatic arthritis the impact can be significant; over a third of this population will miss more than 10 working days in a typical month because of their disease.30
A recent WHO report on psoriasis highlights continuing social stigma and public discrimination toward people with the condition.3 In one survey, nearly half of those asked said they would not want to kiss/hug, share a swimming pool with, or eat food prepared by someone with psoriasis.31
Despite ongoing efforts from patient advocacy groups across Europe, more can be done to dispel the common myths linked to the condition and create more empathy for people living with these complex diseases. Millefeuille is one contribution to this collective effort.
Millefeuille is the culmination of Celgene’s extended research in this area, highlighting a significant group of psoriasis and / or psoriatic arthritis sufferers who, like Élodie, struggle with the multiple aspects of their disease, but believe the status quo is the best they can hope for.
The Multinational Assessment of Psoriasis and Psoriatic Arthritis, or MAPP, was a first-of-its-kind survey which took a unique and extensive look into the impact that psoriasis and psoriatic arthritis have on patients’ lives, and to gain the perspective of people living with the condition and physicians to further understand some of the unmet treatment needs. Nearly 3,500 patients and just under 800 doctors across Europe and North America participated.1
The MAPP data identified a number of unmet needs among the patient community. However, building a true picture of the patient experience cannot be achieved through numbers and statistics alone. Without an authentic understanding of the everyday disease experience it is impossible for healthcare companies to work with charities and healthcare professionals to come up with solutions that will really make a true impact. We saw a need to explore whether the themes seen from this large scale survey would be observed in a patient-level qualitative analysis. It was because of this need for further qualitative exploration of patient needs that P.S.LIVE was created.Read More
P.S.LIVE is a video ethnography project carried out in 2015. Participants were given a filming kit and guide and asked to record themselves for 17 days in their own home discussing what it is like to live with psoriasis and or psoriatic arthritis.2To learn more about the P.S.Live project please visit our YouTube Channel
Learning from these two initiatives, it is clear that there are a number of patients whose wellbeing is severely impacted and who are merely ‘coping’ rather than feeling empowered to address their disease(s). As a result, many people disengage from the health system completely – they either stop seeing their doctor or see them much less often – which in turn makes them harder to reach.1,2
We believe that ‘coping’ is not good enough and that patients deserve more. It is our hope that by using an approach like Millefeuille – which goes beyond the definition of what might be perceived as ‘standard’ disease information and uses fiction to bring the message to live – we can reach and inspire those individuals even if they might be less motivated and perhaps not proactively seeking out education and care.
It is important for people with psoriasis to work in partnership with their dermatologist or other healthcare professional to find a treatment that offers the best disease management and overall satisfaction level for each individual.
What works for one person may not work for another, so it is important to have open discussions to understand the range of options available. These can include32:
In May 2014, the 67th World Health Assembly adopted a resolution on psoriasis encouraging Member States to engage further in advocacy efforts to raise awareness on the disease and to fight the stigmatisation that can affect those who suffer from it.33
Building on this, the World Health Organization has recently released a 2016 report on psoriasis to bring the public health impact of the disease into focus, and raise awareness of the range of ways that psoriasis can affect peoples’ lives.3
Millefeuille has been launched to help support these international efforts to move psoriasis and its challenges up the international health agenda, and improve the experiences of people living with the condition in Europe and across the globe.