Research finds that itch drives those with psoriasis ‘mad’ yet nearly half do not discuss itch with their doctor
Research funded by Celgene in collaboration with the Psoriasis Association reveals the extent to which itch, often an under-rated symptom of psoriasis, affects the lives of those with the condition, with 95% of those surveyed saying their psoriasis itches.1 The negative impact of itch is reiterated by healthcare professionals (HCPs): of those surveyed 62% said patients tell them itch ‘drives me mad’, 73% said patients tell them itch ‘disrupts my sleep’, and 56% said patients report that they are ‘really self-conscious about scratching at work’.2
The survey also reveals the aspects of daily life impacted by itch for those with psoriasis. On a scale of one to ten with ten being the largest impact and one being no impact:
- 45% scored itch eight or above in terms of impact on their social life
- 46% scored itch eight or above in terms of impact on day-to-day home life.1
“We know that itching is a frustrating symptom of psoriasis, but what this shows us is the extent to which itch impacts people’s lives, from a physical, psychological and social perspective,” commented Carla Renton, Information and Communications Manager at the Psoriasis Association. “Itch is often a constant burden, and one that needs to be addressed in order to improve the quality of life of those living with psoriasis.”
Surprisingly, given its impact, conversations around itch in psoriasis aren’t routinely happening:
- 43% of people with psoriasis surveyed don’t talk to their doctor or nurse about itch, with 72% saying they find it difficult to describe how much itch impacts their lives1
- Moreover, just under a quarter (24%) of HCPs surveyed do not proactively ask patients about itch in consultations, in spite of 95% believing it is an important conversation to have.2
In response to the research findings, the Psoriasis Association, Celgene and the British Dermatological Nursing Group (BDNG) have launched the ‘Itch Discussion Tool’, which is available to download now at www.lifesanitch.co.uk. This tool was developed to aid conversations between physicians and people with psoriasis, specifically focusing on the impact of itch on everyday lives.
“Itch is an important and problematic symptom for people with psoriasis but one that may be overlooked by healthcare professionals,” said Professor Chris Griffiths, Professor of Dermatology, University of Manchester. “This new Discussion Tool will help to ensure that itch is assessed as part of routine practice.”
The tool comprises an itch impact questionnaire and an action plan. People with psoriasis can either complete the itch impact questionnaire before or during consultation, and then complete the action plan to tackle itch together with their HCP. The tool is currently being piloted in selected dermatology clinics in the United Kingdom.
The Itch Discussion Tool is part of the wider ‘Life’s an Itch’ campaign, borne from previous research by Celgene showing a significant disparity between patients’ and HCPs’ perceptions of itch as a major factor of disease severity.3,4 People with psoriasis perceived itch as the most important factor contributing to their disease severity and as the most bothersome symptom of psoriasis.4 However, dermatologists only rated itch third in patients’ assessment of disease severity.4
‘Life’s an Itch’ therefore aims to bring to life the real impact of itch on the lives of those with psoriasis. To kick start the campaign, psoriasis bloggers were asked to submit the words they use to describe their itch to the Life’s an Itch website. The campaign was then extended out to the patient community, inviting people with psoriasis to submit the words they use to describe itch. Over 1,600 words were submitted, generating a word cloud of the language most commonly associated with itch in psoriasis. A number of artists, representing different genres, were then commissioned to create bespoke ITCH ART inspired by the words of those with psoriasis. The resulting ITCH GALLERY will be travelling around psoriasis-related meetings and medical conferences during 2016 to help promote the availability of the Itch Discussion Tool.