The Patients Association: New Report Highlights True Personal and Public Cost of Psoriasis, and Spotlights Variation in GPs' Time, Capacity and Skills to Help

• 93% of people surveyed reported psoriasis negatively affects their quality of life^[1]
• Up to 40% of people with psoriasis can also develop psoriatic arthritis^[2]. They are up to five times more likely to develop some cancers compared with the general population,^[3] and up to three times more likely to develop cardiovascular disease^[4]
• Research shows nearly a quarter of the population have sought a GP consultation on skin matters in England and Wales,^[5],[6] yet some doctors have received as little as five days of dermatological training^[7]
• New report calls for regular reviews, at least annually, for all people living with psoriasis

Today, Wednesday 3 May 2017, the Patients Association, in partnership with LEO Pharma, released a new report highlighting the debilitating effect psoriasis can have on up to two million people battling the condition in the UK^[8] and Ireland^[9]. Despite the World Health Organisation (WHO) recognising psoriasis as an area of focus,^[10] and recent advancement in treatments, the PSO What? Report underscores the need for improvement in the health and experiences of people living with psoriasis.

     (Photo: http://mma.prnewswire.com/media/507020/Katherine_Murphy_The_Patients_Association.jpg )

The PSO What? report, led by the Patients Association in collaboration with the expert PSO What? Taskforce, which brought together patients, healthcare professionals and charities, reinforces that far from being 'just a skin condition', psoriasis is a serious, sometimes lifelong condition impacting emotional and mental wellbeing, as well as physical health^[10]. "This new report highlights the need to take action now to address the significant burden psoriasis places on individuals with psoriasis, and inspire those who may have previously given up to take control of their condition, as well as raise the priority of psoriasis care in the health service", said Katherine Murphy, Chief Executive of the Patients Association. "We are therefore asking people to pledge their personal and practical support to drive real change by visiting http://www.PSO-What.com."

She added: "A third of people with psoriasis we surveyed do not regularly visit their GP each year and contrasting healthcare guidelines mean that doctors have no clear direction for when exactly to ask their psoriasis patients back into the consulting room. We are therefore using this report to ask that every individual with psoriasis has the opportunity to discuss their care with a healthcare practitioner, and undergo screening for associated conditions at regular reviews, at least once a year. "

Alongside the personal toll of psoriasis, figures show the disease places a heavy burden on the health service - with nearly a quarter of the population having sought a GP consultation on skin matters in England and Wales; up to 5% on psoriasis alone.^[5],[6] Despite this, some GPs in the UK have only received five days of undergraduate dermatological training.^[7] Inevitably, there is a risk that these practitioners may not be afforded the depth of knowledge required to treat psoriasis specifically. The problem is exacerbated due to the lack of consultants to support GPs, with only 650 dermatologists to provide more specialist care.^[6] This is particularly concerning given that people with psoriasis are  at risk of developing other serious associated conditions,^[10] including psoriatic arthritis,^[10] cardiovascular disease,^{[4],[11],[12],[13]} inflammatory bowel disease (IBD)^[10], liver disease^[10], complications with vision^[14] and some cancers.^[3],[15]

The survey conducted as part of the PSO What? initiative also reveals that the condition negatively affects the quality of life of 93% of the people surveyed and that less than half (45%) feel well supported by their doctor.^[1] Jacqueline McCallum from Hertfordshire was diagnosed with psoriasis over 30 years ago: "Psoriasis is a horrible disease to live with on a daily basis. In the past it has made me depressed and affected my self-esteem, which has limited my personal and professional life. However, I've regularly struggled to even get a GP appointment to discuss my psoriasis because the receptionists do not think it is a serious enough  condition, and do not understand the significant impact it has on my wider health and wellbeing. They see my psoriasis plaques, but not me."

Dr Angelika Razzaque, GPwSI Dermatology and Vice Chair of the Primary Care Dermatology Society (PCDS), comments: "The onus is on the GP community to continually review how we're treating the psoriasis itself, and to look beyond the skin to screen for associated complications such as depression, cardiovascular disease and diabetes. Regular reviews, at least annually, can safeguard against further psoriasis complications. Psoriasis affects everyone differently, but people can live full and happy lives providing they regularly see their doctor, and medical professionals are adequately trained to offer an effective and personalised approach to treatment. My advice to patients is not to give up, there is always a way to get help."

Dr Anthony Bewley, Consultant Dermatologist at Whipps Cross and St Bart's NHS Trust comments, "We, as healthcare professionals need to move far away from the misconception that psoriasis is 'just a skin condition'. The PSO What? Taskforce invites patients to demand more from their health care professionals, to be more empowered, and to make sure that healthcare professionals do not undermine the experience of living with psoriasis. There needs to be a true dialogue between a patient and their doctor in order to achieve the best outcomes for them individually; each person has different needs, experiences and expectations of what they want in order to live well.'

The cost of psoriasis to the UK economy is substantial, coming in at over £1.07 billion in lost productivity alone, while figures show that just a 10% reduction in sickness absence due to psoriasis, would deliver a £50 million boost.^[16] Dr Angelika Razzaque continues: "By 'treating to prevent', we're reducing the risk of life-limiting complications for the patient, helping to tackle sickness absence in the workplace, and reducing the potential burden on the health system later down the line."

PSO What? will you do differently? To find out more visit the PSO What? website (http://www.PSO-What.com) and pledge to do one thing differently to help make a difference for the nearly 2 million people living with psoriasis in the UK^[8] and Ireland.^[9]

Notes to the editor 

About the PSO What? Initiative 

The PSO What? initiative is a partnership programme led by The Patients Association and LEO Pharma, in collaboration with the expert PSO What? Taskforce. LEO Pharma has provided core funding, editorial input and undertaken survey-based research to support the development of the PSO What? Report.

The PSO What? Taskforce is a multidisciplinary group representing people living with psoriasis, psoriasis advocacy and professional groups, and healthcare professionals. A full list of Taskforce members can be found in the report.

The Taskforce met in 2016 to discuss the challenges currently facing people living with psoriasis as well as those who care and commission services for them, including key themes and issues around which change could be effected for the benefit of people living with the condition. The pledge of each member of the Taskforce is to continue to have a voice and drive positive change for psoriasis and develop resources and programmes to facilitate this.

As part of the PSO What? initiative a survey was conducted amongst psoriasis sufferers and healthcare professionals in the UK and Ireland. The survey results and further desk research helped inform some of the key findings of the PSO What? Report. These include:

Psychological impact of psoriasis 

• 93% of people surveyed reported their psoriasis negatively affected their quality of life^[1]
• The psychological issues associated with severe psoriasis are significant. In the UK, over 10,000 diagnoses of depression and over 7,000 diagnoses of anxiety are attributable to psoriasis each year,^[17] and 1 in 20 people with psoriasis are known to have contemplated suicide^[18]
• 40% of sufferers feel psoriasis has affected their relationship, and of these almost a third avoid intimate relationships.^[19] 44% avoid sex completely and 16% have had a partner refuse to have sex with them because of their condition^[19]

Standards of care  

• A third of people with psoriasis surveyed do not regularly visit their GP each year  - many suffer in silence^[1]
• While only 39% of healthcare professionals surveyed thought psoriasis affected their patients' confidence and self-esteem, over half of people with psoriasis said their psoriasis makes them feel self-conscious (73%), embarrassed (69%) and anxious (59%)^[1]
• Four in five (81%) of healthcare professionals believed they were providing enough additional information to educate their patients on their treatments, yet less than half (45%) of patients claimed to feel well-supported by their doctor^[1]
• 53% of people with psoriasis reported one to four nights of disturbed sleep each week and 10% reported five to seven.^[1] However, just a third of healthcare professionals surveyed routinely ask if sleep loss is a problem.^[1]

Impact on employment 

• 43% of people with psoriasis who are in employment report that their condition limits their income and / or future earnings, with individuals taking up to 26 sick days a year, and nearly one fifth claiming to have quit their job or been dismissed as a result of their psoriasis^[16]

To read the full Report visit the PSO What? website: http://www.PSO-What.com

References 

1. Data on file. LEO Pharma. DERM-004 MAR 2017 

2. NHS Choices. Psoriatic Arthritis Overview. Available at: http://www.nhs.uk/conditions/psoriatic-arthritis/Pages/Introduction.aspx. Last accessed April 2017 

3. Pouplard C, Brenaut E, Horreau C, et al. Risk of cancer in psoriasis: a systematic review and meta-analysis of epidemiological studies. JEADV. 2013;27(Suppl 3):36-46.  

4. Gelfand JM, Niemann AL, Shin DB, et al. Risk of myocardial infarction in patients with psoriasis. JAMA. 2016;296:1735-41 

5. King's Fund. How can dermatology services meet current and future patient needs while ensuring that quality of care is not compromised and that access is equitable across the UK? Source report, 7 March 2014. 

6. Schofield JK, Grindlay D, Williams HC. Skin conditions in the UK: a health needs assessment. 2009. Centre for Evidence Based Dermatology, University of Nottingham. 

7. Primary Care Commissioning. Quality standards for dermatology. Providing the right care for people with skin conditions. July 2011. Available at: https://www.bad.org.uk/shared/get-file.ashx?itemtype=document&id=795 

8. Mental Health Foundation, Psoriasis Association. See psoriasis: look deeper. Recognising the life impact of psoriasis. 2012. 

9. Irish Skin Foundation. Securing the future for people with skin disease. Submission to Oireachtas Committee on the Future of Healthcare (Dáil Éireann). August 2016. 

10. World Health Organization. Global report on psoriasis. 2016. World Health Organization. Available at: http://apps.who.int/iris/bitstream/10665/204417/1/9789241565189_eng.pdf. Last accessed January 2017. 

11. Ahlehoff O, Gislason GH, Jorgensen CH, et al. Psoriasis and risk of atrial fibrillation and ischaemic stroke: a Danish nationwide cohort study. Eur Heart J. 2012;33:2054-64. 

12. Lowes MA, Suarez-Farinas M, Kreuger JG. Immunology of psoriasis. Ann Rev Immunol. 2014;32:227-35. 

13. Langan SM, Seminara NM, Shin DB, et al. Prevalence of metabolic syndrome in patients with psoriasis: a population-based study in the United Kingdom. J Invest Dermatol. 

14. Fraga NA, Oliveira MF, Follador I, et al. Psoriasis and uveitis: a literature review. An Bras Dermatol. 2012;87:877-83. 

15. Lebwohl M. Psoriasis. Lancet. 2003;361:1197-204. 

16. Bajorek Z, Hind A, Bevan S. The impact of long term conditions on employment and the wider UK economy. 2016. 

17. Kurd SK, TROXE B, Crits-Christoph P, Gelfand JM. The risk of depression, anxiety and suicidality in patients with psoriasis: a population-based cohort study. Ann Dermatol. 2019;146:891-5 

18. Gupta MA, Schork NJ, Gupta AK. Suicidal ideation in psoriasis. Int J Dermatol. 1993;32:188-90. 

19. Changing Faces. Report highlights stigma faced by psoriasis patients. Available at: https://www.changingfaces.org.uk/report-highlights-stigma-faced-psoriasis-patients. Last accessed March 2017