Director Mariel Metcalfe shares some key findings from a recent Living with psoriasis study conducted in Europe, which is now available to purchase
Psoriasis is a skin condition but its impact goes much further than skin-deep. The late US novelist John Updike, who had psoriasis from the age of six, talked about being ‘At War with my Skin’.
The martial metaphor is no exaggeration. Updike hesitated to use the term ‘disease’ for something “not contagious, painful, or debilitating”. Yet his psoriasis still had “the volatility of a disease, the sense of another presence co-occupying your body and singling you out from the happy herds of healthy, normal, mankind”(1).
What Updike was getting at was the way psoriasis, for all its immediate discomfort, inconvenience and unpredictability, also makes complex emotional and psychological demands on people with the condition. In terms of current treatment paradigms, these subcutaneous factors are too often out of sight and mind.
Psoriasis is a common inflammatory disease found more often in adults than children, with a geographical presence that expands in relationship to its distance from the equator(2). According to a recent systematic review, estimates of psoriasis prevalence worldwide ranged from 0.51% to 11.43% in adults and from 0% to 1.37%.in children(3).
The red, scaly, flaky patches characteristic of psoriasis can appear anywhere on the body, although most often on the scalp, knees, elbows and lower back. Psoriasis is not only highly invasive, it is a chronic condition, subject to flare-ups in response to triggers such as cold or dry weather, infections, stress, hormonal changes, skin damage, smoking or excess alcohol.
In short, there is no getting away from it. Updike describes how psoriasis “keeps you thinking. Strategies of concealment ramify, and self-examination is endless”(4). The disease’s impact ranges from mild irritation to severe discomfort and pain, particularly in psoriatic arthritis, where it is associated with swelling in the joints and connective tissue.
Psoriasis affects everything
In a recent Living With Psoriasis survey conducted in France, Germany, Italy, Spain, the UK, Belgium and the Netherlands, we found that psoriasis affected every aspect of patients’ lives, from the physical to the social and psychological.
The physical symptoms mostly involved itching, experienced by 80% of interviewees in the four weeks prior to the survey, and dry skin (49%). Red raised patches (42%), scaliness (37%) and a burning sensation (31%) were also among the more frequent symptoms.
The arms (74% of respondents), legs (70%) and head (58%) were the areas of the body most commonly affected by psoriasis, with the scalp and hands/fingernails (both 52%) also frequently mentioned. These symptoms were clearly a practical burden for patients. More than one third said psoriasis had a significant bearing on what they wore. Among those who worked or studied, patients typically took four days off per month due to the condition.
The large majority of respondents experienced psoriasis symptoms at least one to two times per week, with many affected daily. Moreover, 31% were prone to flare-ups on a weekly basis, while 36% experienced these fortnightly and 22% monthly. The average duration of flare-up was 6.4 days, with 51% of respondents affected for one to five days and 28% for six to 10 days.
Patients described flare-ups in terms of symptoms becoming increasingly frequent and severe, in particular itching and pain. Spots or crusts spread across the body surface, with skin-splitting and bleeding that soiled clothes and bed linen. These exacerbations were sometimes accompanied by joint pain and fatigue. “It is like an explosion, as if the skin was ‘boiling’ in those areas of the body,” one respondent commented.
The leading causes of flare-ups were stress, reported by 65% of interviewees, followed by cold/dry weather (39%) and infections (33%). Knowing what a flare-up can do just makes the stress worse, as one interviewee noted: “I think that the flare-up is caused by me being nervous. When I have a flare, I feel afraid and concerned that it might spread all over the body.”
Stress and anxiety
In our survey, 77% of respondents experienced stress or anxiety due to psoriasis at least once a week, with 39% stressed everyday and 38% one to two times a week. This was mainly to do with other people’s reactions, misconceptions about the condition, or the visibility of symptoms and how that complicated clothing decisions.
For example, 51% apiece of interviewees were worried what people might think when they saw the effects of psoriasis (e.g., putting it down to lack of hygiene), or that some might regard the disease as contagious. For 50% of patients, having to explain psoriasis to other people was in itself a source of stress or anxiety, while 45% cited lack of understanding among non-sufferers.
Visibility was also a notable stress-trigger, with 49% of respondents troubled by their inability to hide symptoms, another 49% complaining they could not wear the clothes they wanted to, and 48% feeling the strain of having to find clothes that would conceal symptoms.
All of these factors undermined social or workplace functioning: 46% of interviewees said they were concerned about missing out on social activities, 40% that psoriasis restricted their daily routine (e.g., chores, cleaning), and 39% that it impaired their ability to work or study.
Not surprisingly, these various pressures and stigmas can lead to social isolation, whether through the patient’s own choice or restrictions imposed by others, and particularly when symptoms are severe or flare up.
Our qualitative research found that respondents with psoriasis felt unable to participate in activities with families or friends, such as playing sports or using a swimming pool, because they were too embarrassed or had to cover up. One interviewee said she was banned from her local public pool, which acknowledged psoriasis was non-contagious but felt it would disturb other swimmers.
Other respondents talked of avoiding social interaction out of fear that other people would notice personal discomfort with their appearance, or of being looked at differently and excluded from customer-facing jobs.
The accumulation of physical, social and mental effects around psoriasis leave some patients with intensely negative feelings about the condition. These may stem from:
While people with psoriasis may not experience all of these emotions all of the time, the disease remains a constant and inescapable subtext. It follows, then, that better management of psoriasis requires more education, awareness, empathy and psychological support to normalise the condition and liberate patients from stigmas and self-consciousness.
One starting point would be better patient relationships with healthcare professionals (HCP) who diagnose and treat psoriasis. This was a key concern in our survey. For example, 44% of respondents wanted a more open relationship with their doctor, while 42% wanted their doctor to spend more time with them.
Moreover, 16% of patients sought better support. This was also the second most frequently mentioned factor when patients were asked which general improvements they would like to see in psoriasis management.
In addition, survey respondents were looking for greater empathy from HCPs, especially at diagnosis and in prescribing and switching of treatments. They felt the way doctors delivered a psoriasis diagnosis and explained the effects of treatment could be insensitive, reducing the patient to ‘just another number’.
One patient described how, when he started on methotrexate for psoriasis, the doctor told him he would need to stop treatment if he was thinking of fathering a child. “At that time I was trying to become a father,” the patient said. “I will always remember that moment, because the doctor didn’t even look at me - he was in a hurry.”
Among other significant unmet needs in the management of psoriasis arepsychological support as well as awareness of, or ability to connect with, appropriate patient-support groups that can help with coping strategies.
Psychologically, people with psoriasis want a more holistic approach to treatment that goes beyond pharmacological intervention. It needs to addresses the stress and anxiety caused by psoriasis, and the feelings of isolation and rejection that come with an all too visible symptomatology.
“I needed this about 30 years ago, because I felt like I was inside a dark hole with no escape,” one respondent commented. “As a patient I can see that even nowadays there isn’t enough psychological support available to a lot of people suffering.”
Need to talk
Talking to other people who have lived with the condition can go a long way towards reminding psoriasis patients that they are not alone, raising their self-esteem, putting societal responses into perspective, and providing practical guidance on symptom management. Yet 77% of nterviewees in our survey did not belong to a support group dealing with psoriasis.
As one respondent noted, even the most basic interaction can make a large difference. “I was very scared that I would have severe psoriasis forever and would continue to suffer the rejection I was experiencing,” she said. “Talking to someone who has lived through it and knows what it is like would have been really helpful.”
Information flow is also critical. Patients in our survey were looking for better education and awareness among the general public about psoriasis, particularly to dispel misconceptions that the disease is unhygienic or contagious. Patients’ intense self-awareness of their condition amplifies the effects of these negative attitudes.
They also wanted more and better information sources for their own use, such as websites, newsletters, educational materials or mobile apps that would keep them up to date with developments in psoriasis and the availability of new treatments.
While our survey found that patients on advanced therapies for psoriasis feel their social and psychological well-being has improved with the alleviation of visible symptoms, all respondents sought improvements in redness, moderate-to-severe itching, pus and scaliness.
Lessons for pharma
There are lessons here for pharmaceutical companies active in, or thinking of entering, the psoriasis treatment market.
Nowadays patient-centricity and understanding the patient experience are standard strategic imperatives, as digital media, mobile technology and ready access to information turn the traditional healthcare pyramid, with the doctor at the apex, on its side. Yet our survey findings indicate strongly that patient experience in the psoriasis category is suboptimal, with a persistent residue of stigmatisation and disengagement.
As many as 74% of respondents said they did not currently use or receive support or resources from pharmaceutical companies manufacturing treatments for psoriasis. The proportion without support was even higher for patients with non-advanced psoriasis – 88%, whereas 66% of patients with advanced psoriasis had no support from manufacturers.
Among those patients not currently receiving support, the most demand was for websites specific to psoriasis (46% of respondents), followed by educational pamphlets and brochures (36%), mobile apps to help disease management (25%), dedicated helplines (22%) and company-sponsored support groups (20%).
With all the digital and other communications resources at their disposal, as well as expertise in every aspect of the disease and its treatment, pharmaceutical companies are in a prime position to open up dialogue around psoriasis and respond more directly and effectively to a range of unmet patient needs.
They should also bear in mind that psoriasis patients are distinctly segmented, depending on perceived degree of impact on quality of life, patients’ engagement with HCPs and treatment strategies, and the kind of support they are looking for. Our research identified five different patient archetypes: content and stable; trusting and coping; new and needy; disengaged; and impacted.
Pharmaceutical companies can best address these characteristics by developing not just more effective, patient-friendly treatments, but tailored services and information that engage with all psoriasis stakeholders to ensure the full spectrum of patient needs is met.
In that way, patients can start to feel less preoccupied with covering up their condition, dreading the next flare-up or worrying about how it looks to other people, and concentrate on living a life comfortable in their own skin.