Living with psoriasis: a patient perspective
February 2021 Joshua Vine-Lott
“My psoriasis flares up about once a month, which leaves me looking like I have third-degree burns on my face, legs, and stomach. Most of my friends don’t understand it, and I’m not really sure my doctor does either. Through research, and trial and error, I have learned how to manage my psoriasis, sort of. I just wish there were a magic cream out there that would make it go away for good.”
We recently spoke with Alex to get a first-hand account of what it’s like for someone living with psoriasis in the UK, and to understand how we, as healthcare communicators, can potentially help.
Impact of psoriasis
Psoriasis has a profound impact on someone’s physical and psychological wellbeing. Flare-ups can damage confidence, limit social activity, and reduce intimacy. However, these impacts are often downplayed by those living with it.
“When my psoriasis flares up I feel very self-conscious. I’ve got more confident with age, but a few years ago I wouldn’t wear shorts if I was having a flare-up because of how bad it looks. I would rather have an eczema flare-up than a psoriasis one. Whilst eczema hurts a lot more, it doesn’t look nearly as bad, and more often than not, I can fix it.”
Lotions and potions are the beginning, not the end
Topical treatments are the first-line option for people living with psoriasis in the UK. The volume of available options makes it easy for people to be prescribed cream after cream, despite the fact they are having little effect on their psoriasis. Topical treatments are also expensive.
Psoriasis is a chronic condition, with little awareness amongst HCPs and the public. This can make it difficult, and often frustrating, for people living with psoriasis to continually explain their condition to others.
“When I call my GP to discuss a flare up, I can hear them scrolling through all of the creams I’ve had in the past. Yet they just give me another one. I’ve got a drawer full of lotions and potions that do very little to make my skin better.
Alex’s experience is not uncommon, the majority of people find themselves being cycled through topical treatments by their GP, with little to no effect on their condition. Despite the fact that there are a number of systemic treatments now available, one studied showed that fewer than 7,000 people living with psoriasis (out of a possible 1.8 million[i]) received a biologic therapy in the UK in 2012.[ii]
Systemic treatments are typically reserved for the most severe cases. However, people with moderate/severe psoriasis can gain access to more effective treatments, if the doctor determines the impact on their life to be significant enough.
This is commonly determined by two indices, developed by the British Association of Dermatologists:
- Psoriasis Area and Severity Index (PASI)
- Assesses the size and severity of psoriasis flare-ups and is used to determine the physical impact of the condition
- Dermatology Life Quality Index (DLQI)
- Assesses the impact of the condition on a patient’s quality of life, e.g. level of embarrassment and level interference with daily activity
These indices have been around for a while, yet Alex (and many others), have little to no knowledge of their existence, or how they are used. In fact, a study revealed that only 32% of people living with psoriasis reported having their disease severity measured.[i]
Helping people understand how these tools are used by doctors, and giving them the skills to gather evidence about their condition between appointments, is an important step towards improving long-term outcomes.
There is a clear gap in understanding on both sides of the psoriasis care pathway. GPs receive little dermatology training, making it difficult for them to truly understand the impact that the condition is having on a patients’ life.
For those living with it, navigating a complex treatment pathway, with limited access to specialist dermatologists[ii] and whilst managing flare-ups, are significant challenges to achieving long-term goals.
Clear skin and the associated challenges
Clear skin is somewhat of a perceived fantasy for most people living with psoriasis. They may have seen one or two people achieve it, but not fully understand the route taken to get there. The lack of information about how treatment decisions are made and the journey to clear skin makes it difficult for people to forge their own path there.
“Having clear skin would make me confident, content, and comfortable. However, without some sort of magic cream, I don’t see that it is possible. There isn’t enough evidence out there.”
As healthcare communicators, we have a role to play in working with the patient community to inspire the belief that achieving clear skin is possible and co-creating tools and resources to help them achieve it.
By sharing best practices, success stories, and real-life examples of others achieving clear skin, we can support the belief that clear skin is possible. We can also help to activate people living with psoriasis by focusing on three core pillars:
Activating people living with psoriasis to play a role in their treatment decisions involves three key steps:
- Knowledge of patient rights within the NHS, how PASI and DLQI are used to prescribe treatments, the psoriasis care pathway and the different treatment group
- Skills to use the tools available and to participate in shared decision-making with their GP or dermatologist
- Confidence to seek and pursue long term positive outcomes, instead of short-term fixes
Activating patients to take control of their health is something we at Aurora have done for our clients many times over the years. Get in touch with one of the team to find out more: firstname.lastname@example.org
[i] Psoraisis Patients Association – about psoriasis. Psoriasis Patients Association 2017. Available at: https://www.psoriasis-association.org.uk/about-psoriasis Last accessed: February 2021. Last reviewed: March 2019
[ii] NICE Psoriasis Quality Standards Indicator. National Institute of Health and Care Excellence 2012. Available at: https://www.nice.org.uk/guidance/qs40/documents/psoriasis-briefing-paper2