Innovative research published in the latest edition of the British Journal of Dermatology reveals the causes behind the emotional distress experienced by people with psoriasis. For the first time, researchers gathered and analysed direct patient insights to uncover the seven 'personal models' that frame the way those with psoriasis perceive their condition, lives and identity, providing new understanding of the life impact of the condition.
Understanding patients' personal models is important because it can help to explain the considerable variation in health behaviours shown by individuals with apparently similar levels of disease activity, and also underscores the need for patient support and psychological treatment to be made available as part of routine care.
There is increasing evidence of the psychological impact of psoriasis, which can results in anxiety, loss of self-esteem, depression and even suicide, but understanding the cause of such emotions can help healthcare professionals to recognise and manage those emotions effectively.
The SPLD research analysed personal messages that patients 'sent' to their psoriasis and found that several themes emerged. One key theme was the impact of psoriasis on a person's identity and relationships. People characterised their psoriasis as a 'monstrous' presence or companion that they could never be rid of. In contrast, the individuals themselves often felt like their own identity was lost to the condition and that it prevented them from building relationships with others through shame or embarrassment.
"The research contained some shocking perceptions of psoriasis" said Chris Bundy, research leader and member of the SPLD collaboration. "Along with images of monsters and alienation, patients revealed powerful emotions that ranged from annoyance and resentment to images of violence and aggression. Some of these people are clearly experiencing high levels of psoriasis driven distress in their everyday lives, and more needs to be done to help them."
To help people with psoriasis to address these feelings, the See Psoriasis: Look Deeper campaign has worked with NHS psychologists to create Psoriasis You Wont Stop Me!, a series of psychological support booklets. Each booklet focuses a particular emotion or behaviour, and provides easy to use exercises to help the reader to understand and overcome them.
For example, one booklet focuses on how to overcome feelings of embarrassment and shame, whilst others contain advice on how those that have become isolated can feel confident entering back into social situations and express themselves.
"For many of our members, the emotional impact of psoriasis is just as important as the physical symptoms and can have a huge impact on their quality of life" said Helen McAteer, Chief Executive of the Psoriasis Association. "The booklets were created to provide practical and direct emotional support to patients, and we also hope that it will give them the confidence to talk to their doctor about how the condition is making them feel. By using these simple exercises, we hope that patients can reshape their outlook and improve their quality of life significantly."
The booklets have been authored by NHS psychologists working as part of the dermatology team at the Royal Free Hampstead NHS trust, and include techniques used every day with their psoriasis patients. Such psychological support however is only available at very few hospitals in the UK.
"Our psoriasis service team is fortunate to include a dedicated psychologist to see patients experiencing emotional distress" said See Psoriasis: Look Deeper member, Sandy McBride, Consultant Dermatologist, Royal Free Hampstead NHS Trust. "Sadly however, it is an exception rather than a rule for dermatology departments to include a psychologist and provide psychological treatments for people with psoriasis and other skin conditions. Much more needs to be done to make sure that this level of care is given to all patients who need it."
The booklets are being distributed to dermatology centres around the country, and are also available to download from www.seepsoriasislookdeeper.co.uk and www.psoriasis-association.org.uk