National Survey Results From The Psoriasis Association Reveal Widespread Inconsistencies in the Care and Management of People With PsoriasisBy The Psoriasis Association, PRNE
Monday, October 31, 2011
NORTHAMPTON, England, November 1, 2011 -
Call for improved care and treatment guidance to be included by NICE in forthcoming review
- Results from over 600 UK patients show widespread dissatisfaction with psoriasis treatment
- Only 16% of patients said they have had their disease severity measured
- Only 9% offered simple assessment regarding impact on quality of life
- With Photos
New results revealed today from The Psoriasis Association show that the majority of people with psoriasis in the UK are suffering as NHS specialists fail to follow national guidelines for their care and management.
The survey, supported by Janssen, asked over 600 psoriasis patients whether their doctor had offered a simple assessment called the “PASI”* which records how bad their disease is; only a shocking 16% of sufferers responded that they had been tested, or were aware that they had been tested.
The survey also revealed high levels of dissatisfaction with the standard of care received by patients across the UK, with Northern Ireland, Wales, Yorkshire and the South East coast of England being highlighted as areas of particular concern.
Estimated to affect approximately 1.5 million people in the UK,[3,4] psoriasis is a painful and debilitating condition characterised by red, raised and inflamed patches on the skin and is classified as being mild, moderate or severe. As well as being physically debilitating, psoriasis can have a deep psychological impact.
Helen McAteer, Chief Executive of The Psoriasis Association said, “The British Association of Dermatologists recommends that everyone with psoriasis should have the severity of their disease assessed - taking into consideration where on the body it appears, how widespread it is and the thickness and redness of the plaques. Using the PASI helps patients and doctors understand the physical severity of the psoriasis and, with ongoing checks, what improvements treatment is making. Psoriasis is complicated to treat - it doesn’t stay in one place. Improvement might be seen in one area of the body only for it to resurface elsewhere. That’s why it’s so important to have regular reviews of both treatment and disease activity built into the care of people with psoriasis, and that any assessment includes the impact that psoriasis is having on a patient’s quality of life.
“The survey results show that the majority of people with psoriasis are not aware of their PASI, which has a worrying and detrimental impact on the care that they receive. As an organisation that exists to empower patients and represent their interests, we are calling for the PASI assessment to be included in the forthcoming review by NICE. Guidelines are already in place regarding the prescribing of certain treatments for psoriasis that require a PASI score and this one measure would help enormously in our bid to ensure all patients across the UK have access to appropriate care and treatment.”
The results of the Know Your PASI Survey will be presented at the House of Commons on 8 November, 2011 as part of the All Party Parliamentary Group on Skin meeting.
Notes to Editors
This press release was funded by Janssen.
About the Psoriasis Area and Severity Index (PASI)
The PASI is a free and simple, painless assessment which takes into account how bad a patient’s psoriasis plaques are (how thick, red or sore they are) and how much of the body is affected, to come up with a score. The score is given as a number from 0 (not affected at all) to 72 (very severely affected). If the PASI score is more than 10, the disease is classified as moderate to severe.
Psoriasis is much more than a physical disease and can be considered severe if it has a profound psychological effect on a person’s quality of life. The Dermatology of Life Quality Index (DLQI) is recommended to assess the impact of psoriasis on quality of life. The survey found that only 9% of patients had their DLQI assessed, or were aware of it being assessed.
An interactive PASI calculator (available as an iPhone/iPad app or PC tool) for calculating a PASI score can be downloaded at: goo.gl/ZaFBs
About The Psoriasis Association
The Psoriasis Association is the leading national membership organisation for people affected by psoriasis - patients, families, carers and health professionals. Founded in 1968 by Dr Dick Coles, a Consultant Dermatologist in Northampton, the Association has three main aims:
1. To support people who have psoriasis
2. To raise awareness about psoriasis
3. To fund research into the causes, treatments and care of psoriasis
About the Survey
The Know Your PASI Survey is part of a joint collaboration between The Psoriasis Association and Janssen to help educate patients and doctors about how the medical severity of psoriasis is assessed. The survey was conducted by medeConnect Healthcare Insight, part of the Doctors.net.uk group.
- Fieldwork for the study was conducted from 13 July - 26 September, 2011
- 667 respondents answered a five minute online quantitative survey, 603 of whom live in the UK
- Recruitment was conducted via The Psoriasis Association website, the Psoriasis Association Facebook page and @psoriasisUK, the complementary Twitter feed, as well as the Psoriasis360 Facebook page and @psoriasis360
Janssen Pharmaceutical Companies of Johnson & Johnson are dedicated to addressing and solving the most important unmet medical needs of our time, including oncology (e.g. multiple myeloma and prostate cancer), immunology (e.g. psoriasis), neuroscience (e.g. schizophrenia, dementia and pain), infectious disease (e.g. HIV/AIDS, Hepatitis C and tuberculosis), and cardiovascular and metabolic diseases (e.g. diabetes).
Driven by our commitment to patients, we develop sustainable, integrated healthcare solutions by working side-by-side with healthcare stakeholders, based on partnerships of trust and transparency. More information can be found at www.janssen-cilag.co.uk/
Pictures accompanying this release are available through the PA Photowire. They can be downloaded from www.pa-mediapoint.press.net or viewed at www.mediapoint.press.net or www.prnewswire.co.uk.
- The Know Your PASI Survey. Data on file. October 2011
- Mrowietz U et al. Definition of treatment goals for moderate to severe psoriasis: A European consensus. Archives of Dermatological Research. 2011; 303:1-10.
- The Psoriasis Association. Available at: www.psoriasis-association.org.uk. Accessed 8 October 2011.
- Office for National Statistics: Annual mid-year population estimates 2010.
- US National Psoriasis Foundation. Available at www.psoriasis.org/about-psoriasis/treatments/severity. Accessed on 6 October 2011.
- Dubertret L et al. European patient perspectives on the impact of psoriasis: The EUROPSO patient membership survey. British Journal of Dermatology. 2006: 155:729-736.
Media Contact: Laura Aplin, Publicis Life Brands Resolute, Phone: +44(0)207-397-7473 or +44(0)7891-426-908
Tags: England, Facebook, Northampton, November 1, The Psoriasis Association, United Kingdom