New Survey Results from The Psoriasis Association Reveal that Significant Improvements Are Still Needed in the Care of Psoriasis Patients to Meet New NICE Recommendations

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Psoriasis Association

08 Nov, 2012, 08:00 GMT

NORTHAMPTON, England, November 8, 2012 /PRNewswire/ --

New results from a recent survey by The Psoriasis Association reveal that despite progress in the number of patients having their psoriasis severity level assessed, there is still a high level of patient dissatisfaction with treatment, suggesting that these assessments may not be translated into therapy changes where appropriate. Despite an increase in awareness of psoriasis severity measurement, this latest survey also showed that more than half of patients were very dissatisfied with the treatment they were receiving, and over two thirds stated that their doctor or nurse had not discussed any treatment to help improve their quality of life (QoL).[1]

The 'Know your PASI' follow-up survey, which was supported by Janssen, has revealed that patient awareness of Psoriasis Area and Severity Index (PASI) assessments has increased since the first survey in 2011. In fact, the percentage of patients aware of the PASI measurement has nearly trebled to 59%. It is surprising, however, that only 32% of patients have had this important disease severity measurement taken by their doctor. In addition, 63% of patients could not recall their psoriasis severity being measured by any other means, suggesting that they may not be managed effectively as a result.[2]

Helen McAteer, Chief Executive of The Psoriasis Association, says "The survey findings are astonishing and highlight that there has become a need for patients to be proactive in order to drive a change in therapy where they feel they are not receiving the best treatment. We strongly support the need for this change because we see that psoriasis severity assessments are not consistently used or translated into changes in treatment where appropriate."

These findings show a significant disparity between the recommendations being made in the latest National Institute for Health and Clinical Excellence (NICE) guidelines - that all patients should have their disease severity regularly assessed through PASI measurements, and their QoL assessed through the Dermatology Life Quality Index (DLQI), to ensure that they receive the care and treatment they require.[3]Further new findings from the 'Know your PASI' follow-up survey revealed that patients are not being assessed for other key factors such as their cardiovascular risk, which worryingly may mean other conditions and adverse effects of treatment are not being identified.

The government has recognised in a recent framework of care that enhancing QoL for people with long-term conditions is of great importance when considering patient management.[4] The British Association of Dermatologists (BAD) 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. The PASI assessment helps patients and doctors understand the physical severity of the psoriasis and provides a benchmark which, with on-going checks, shows what improvements treatment is making, or crucially, if the treatment is not having the required effect.

Helen McAteer concludes "Based on the new survey findings, The Psoriasis Association is calling for improved awareness of the importance of disease severity, and consequently increased measurement of this in psoriasis patients. We also recommend that to facilitate improved QoL, patients need to proactively request information on different treatments they may eligible for, as soon as their psoriasis severity is deemed great enough for a change in therapy. Patients should feel comfortable speaking up when they are unhappy with their current treatment."

Every person who is passionate about the care provided for patients with psoriasis in the UK is encouraged to sign the Psoriasis Mandate, an online petition calling for improved standards of care in the diagnosis and management of psoriasis. The Psoriasis Association invites signatures to this Mandate, which can be accessed via http://www.psoriasis360.com/psoriasis-mandate to call for support for five key rights of people with psoriasis:

  • Early and accurate diagnosis
  • Access to a specialist for regular treatment review
  • Access to effective treatment options
  • Involvement and choice in a treatment plan with defined goals
  • Understanding and support from society to live a normal life

Estimated to affect up to 1.8 million people in the UK, 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.[5] As well as being physically debilitating, psoriasis can have a deep psychological impact.[6]

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[7] (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 DLQI is recommended to assess the impact of psoriasis on quality of life.

An interactive PASI calculator (available as an iPhone/iPad app or PC tool) for calculating a PASI score can be downloaded at: http://www.psoriasis360.com/about-psoriasis/types.

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 4-26 April 2012 with a 5 minute online quantitative survey with 200 psoriasis patients that had participated in the original survey, which took place during 13 July-26 September 2011 and involved 667 respondents, 603 of whom live in the UK, who answered a 5 minute online quantitative survey
  • Recruitment occurred via Psoriasis 360 website and The Psoriasis Association  

About Janssen

At Janssen, we are dedicated to addressing and solving some of the most important unmet medical needs of our time in oncology, immunology, neuroscience, infectious diseases and vaccines and metabolic diseases.  Driven by our commitment to patients, we bring innovative products, services and solutions to people throughout the world.  The legal entity of Janssen in the UK and Ireland is Janssen-Cilag Limited.  Please visit http://www.janssen.co.uk for more information.

References:

  1. The Know Your PASI Follow-Up Survey. Data on file. October 2012
  2. The Know Your PASI Survey. Data on file. October 2011
  3. National Institute for Clinical Excellence. Psoriasis. Assessment and management of psoriasis. Clinical Guideline: methods, evidence and recommendations. October 2012
  4. The NHS Outcomes Framework 2012/13. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_131723.pdf . Last accessed October 2012
  5. The Psoriasis Association. Available at: http://www.psoriasis-association.org.uk. Accessed 22 October 2012
  6. Dubertret L et al. European patient perspectives on the impact of psoriasis: The EUROPSO patient membership survey. British Journal of Dermatology 2006:155:729-36
  7. Mrowietz U et al.  Definition of treatment goals for moderate to severe psoriasis: A European consensus. Archives of Dermatological Research 2011;303:1-10
  8. US National Psoriasis Foundation. Available at http://www.psoriasis.org/about-psoriasis/treatments/severity. Accessed on 22 October 2012.