see psoriasis: look deeper report

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  • see psoriasis:look deeperRecognising the life impact of psoriasis

  • 2people in theUK havepsoriasis1

    Men and womenare affected equally1

    of people with psoriasis have plaque psoriasis, which can appear on any part of the body but most commonly it affects the scalp, elbows, lower back, navel and knees2

    of those affected with psoriasis describe it as a problem or significant problem impacting their quality of life3

    Approximatelyone third experience depression & anxiety4

    with moderate to severe psoriasis have been found to have problems

    with alcohol5

    contemplate suicide7,8

    Approximately

    people report beingrejected (and stigmatised as a result) because of their condition9

    experience feelingsof humiliation10

    App

    roxi

    mat

    ely

    work days per year may be lost;a third of patients also report

    missing at least one day a month and one in ten miss three

    or more days a month due totheir health11,12

    feel annoyedwith their disease10

    of patients with severe psoriasis take anti-

    depressant medication6

    1. The Psoriasis Association, What is Psoriasis, 2011, Accessed at: https://www.psoriasisassociation.org.uk/silo/files/No1%20what%20is.pdf Accessed on: September 2012

    2. Griffiths CEM, Barker J. Pathogenesis and clinical features of psoriasis. Lancet 2007;370(9583):263713. Dubertret L, Mrowietz U, Ranki A, et al. EUROPSO Patient Survey Group. European patient perspectives on the impact

    of psoriasis: the EUROPSO patient membership survey. Br J Dermatol 2006;155(4):729364. Kimball AB, Gieler U, Linder D, et al. Psoriasis: is the impairment to a patients life cumulative? J Eur Acad Dermatol

    Venereol 2010;24:98910045. McAleer MA, Mason DL, Cunningham S. Alcohol misuse in patients with psoriasis: identification and relationship to

    disease severity and psychological distress. Brit J Dermatol 2011;164:125612616. Meyer N, Paul C, Feneron D. Psoriasis: an epidemiological evaluation of disease burden in 590 patients. J Eur Acad

    Dermatol Venereol 2010;24:107510827. Kurd SK, Troxel AB, Crits-Christoph P, Gelfand JM. The risk of depression, anxiety, and suicidality in patients with

    psoriasis: a population-based cohort study. Arch Dermatol 2010;146(8):8915

    8. Eedy D, Burge S, Potter J, et al, on behalf of The British Association Dermatologists and Clinical Effectiveness and Evaluation Unit, Royal College of Physicians Clinical Standards Department. An audit of the provision of dermatology services in secondary care in the United Kingdom with a focus on the care of people with psoriasis. January 2008.

    9. Ginsburg IH, Link BG. Psychosocial consequences of rejection and stigma feelings in psoriasis patients. Int J Dermatol 1993;32(8):58791

    10. Sampogna F, Tabolli S, Abeni D, and the IDI Multipurpose Psoriasis Research on Vital Experiences (IMPROVE) investigators. Living with psoriasis: prevalence of shame, anger, worry, and problems in daily activities and social life. Acta Derm Venereol 2012;92:299303

    11. Finlay AY, Coles EC. The effect of severe psoriasis on the quality of life of 369patients. Brit J Dermatol 1995;132:236244

    12. Schmitt JM, Ford DE. Work Limitations and Productivity Loss Are Associated with Health-Related Quality of Life but Not with Clinical Severity in Patients with Psoriasis. Dermatology. 2006;213:102110.

    References

  • 3Anyone living with psoriasis will agree that it is life-changing.

    For up to approximately 1.8 million people in the UK who are affected by psoriasis, it is more than just a skin condition.1,2 The multi-faceted nature of psoriasis means the effects go beyond visual signs and symptoms.2 It can impact on emotional and physical wellbeing and in some people it is associated with depression, anxiety and suicidal thoughts, particularly in those affected with more severe psoriasis.3-6

    Yet, despite the documented impact on emotional wellbeing, these wider effects often go unrecognised and untreated.5,7

    We, the Psoriasis Association and the Mental Health Foundation, have come together to raise awareness of the need for healthcare professionals to look at psoriasis holistically, to consider both the physical symptoms and psychological wellbeing, and ensure people with psoriasis receive the care and support they need. Some people with psoriasis often feel that their GP regards psoriasis as a minor skin complaint and are dismissive of the emotional aspects leaving many to continue unaided on the isolating and emotional journey associated with psoriasis.5,7

    This report is part of the See Psoriasis: Look Deeper campaign exploring psoriasis as a complex, progressive condition which has numerous consequences for the individual, their family, and society as a whole.2,3,4,8,9

    We call for

    The full impact of psoriasis to be recognised and treated by multi-disciplinary teams who will look deeper, both literally and metaphorically, to ensure that the treatment people receive addresses all their health needs.

    To create change, we need to

    Prioritise political efforts to ensure that the financial levers and incentives for commissioners are aligned to multi-disciplinary working. Beginning with the National Institute for Health and Clinical Excellence (NICE) guidance on the management of psoriasis, and following through to the guidance issued by the NHS Commissioning Board to the new Clinical Commissioning Groups (CCGs), the NHS must support collaborative working that can respond appropriately to both the physical and psychological needs of people with psoriasis.

    At the same time, we are calling on people with psoriasis, and their families and friends, to consider the broader impacts of the condition and be aware of the potential impact on psychological wellbeing and quality of life. We ask them to not suffer in silence, but to ask for help to ensure that they receive appropriate referrals and treatment when they need it most.

    Helen McAteer, Chief Executive, Psoriasis Association

    Andrew McCulloch, Chief Executive, Mental Health Foundation

    Foreword

    see psoriasis:look deeper

    Together we can work towards improved holistic care for people with psoriasis. We just need to see beyond the skin and look deeper into their needs.

  • 4Looking beyond the skin

    *People with psoriasis submitted postcards for inclusion within the See Psoriasis: Look Deeper campaign describing how their psoriasis makes them feel and express the impact that the condition has on their life. People could choose to stay anonymous if they preferred.

    Many people see psoriasis as a condition that only affects the skin and impacts on appearance; they do not realise that the effects can go much deeper and can have a lasting effect for those living with the condition day-to-day.7 As a long-term condition affecting many patients for most of their adult life, its unpredictable nature means its impact varies, so while some people manage for years without a psoriasis flare, others are affected regularly.10

    Similarly, the severity of psoriasis can vary enormously; some people have a single, isolated plaque that is barely noticeable, yet others can be affected in many different areas of the body.10 Psoriasis plaques can be itchy or sore, and may cause the skin to crack and bleed.11

    Psoriasis is strongly associated with the risk of other health issues, further adding to the difficulty that many patients face. Between 6% and 40% develop psoriatic arthritis stiffness, pain and swelling of the joints, which may lead to deformity;12-15 whilst the risk of developing conditions such as cardiovascular disease, type 2 diabetes, depression and Crohns disease is also increased.2,14,15,16

    Psoriasis The FacTs

    >

    >

    >

    It is a chronic inflammatory disease

    estimated to affect between 1.5% and 3%

    of the UK population, which means that up to

    1.8 million people are affected1,2,4,13,17

    90% of people with psoriasis have plaque

    psoriasis which can appear on any part of

    the body but most commonly it affects the

    scalp, elbows, lower back, navel and knees17

    Most people are managed in Primary Care

    with topical treatments; however, if these

    treatments are not successful, people with

    psoriasis may be referred to specialist

    dermatology services for UV light therapy,

    systemic treatments or biologics10

    WHY DID YOU IMPACT INT

    O MY LIFE? WHERE DO

    YOU COME FROM? WHEN I

    WAS A CHILD WHY DID

    PEOPLE THINK I HAD FLEA

    S? WHY WHEN I COMBED

    MY HAIR DI D IT LOOK L

    IKE A SNOWSTORM? WHY

    DID GIRLS SHUN ME LIKE

    I HAD THE PLAGUE?

    WHY WAS I BORN, JUST

    TO HAVE SUCH A LONELY

    EXISTENCE? WHY? WHY?

    WHY?

  • 5*People with psoriasis submitted postcards for inclusion within the See Psoriasis: Look Deeper campaign describing how their psoriasis makes them feel and express the impact that the condition has on their life. People could choose to stay anonymous if they choose.

    Like it or not, we live in a society where appearance matters, so it should come as no surprise that psoriasis impacts on the psychological wellbeing as well as quality of life for those who have to endure it.2,4

    Contrary to popular belief, these effects are not always related to or based on how severe the condition may be. For example, someone with physically mild symptoms may have more difficulty coping than others with more severe or extensive symptoms.18 It essentially boils down to how each individual feels they can cope and the support they have to do so.