Burden of Psoriasis Report Final
Burden of Psoriasis Report Final
Burden of Psoriasis Report Final
TheBurden
Burdenof
ofPsoriasis
Psoriasis
The Burden of Psoriasis
Epidemiology, Quality
Epidemiology, of Life,
Quality Co-morbidities
of Life, Comorbiditiesand
andTreatment
Treatment Goals
Goals
Epidemiology, Quality of Life, Comorbidities and Treatment Goals
P S O R I AS I S : N OT JU ST A SK IN DISE ASE
P S O R I A S I S : NOT J U S T A S K I N D I S E A S E
The Burden of Psoriasis
Epidemiology, Quality of Life, Co-morbidities and Treatment Goals
This report has been supported by the Irish Skin Foundation and produced by Novartis Ireland in
conjunction with the J.E. Cairnes School of Business and Economics at the National University of
Ireland, Galway with clinical input from Professor Louise Barnes, Professor Brian Kirby, Professor
Oliver Fitzgerald and Dr Anne Marie Tobin.
REPORT: The Burden of Psoriasis
4
REPORT: The Burden of Psoriasis
Contents
Foreword 7
Infographic 8
Introduction 11
3 Co-morbidities 31
3.1 Introduction 31
3.2 Psoriatic Arthritis (PsA) 31
3.3 Psoriasis and Cardiovascular risk factors 33
3.3.1
Obesity 34
3.4 Metabolic syndrome 35
3.5 Cardiovascular events 36
3.5.1
Stroke 36
3.5.2
Myocardial infarction 37
3.6 Conclusion 38
4 Treatment Goals 39
4.1 Conclusion 40
5 Conclusion 41
5.1 Limitations and implications for future research 42
6 Appendix 43
7 References 45
8 List of tables & Glossary 49
5
REPORT: The Burden of Psoriasis
6
REPORT: The Burden of Psoriasis
Foreword
Though psoriasis was only formally recognised as a distinct entity in the mid 1800s, it has likely been described for the past 3,500 years,
often confused with conditions such as leprosy.1-3 Indeed, it is this condition that twice Pulitzer prize winner and psoriasis sufferer, John
Updike, uses as a metaphor in the short story From the journal of a leper, to describe the stigma and trauma, psoriasis sufferers can
experience, oftentimes silently.4
She glances at me and does not know I am a leper. If I bared my arms and chest she would run screaming. A few integuments of
wool and synthetic fibre save me from her horror: my enrollment in humanity is so perilous.5
Certainly, evidence has shown that psoriasis can affect a patients quality of life to a level comparable with other chronic conditions,
including myocardial infarction and some cancers.6 It has even been independently associated with suicidal ideation.7 Though it has
long been considered that, with psoriasis, torture is skin deep, evidence has been mounting that it is a systemic inflammatory disease
with an increased risk of mortality when severe.2,5
This is on a backdrop of an ageing demographic within the developed world, which is resulting in a rapid increase in chronic diseases.
Already accounting for 80% of disease burden in the European Union, this change is expected to significantly elevate the cost of
healthcare in the coming years.8 Improved utilisation of information is expected to be a key player in the fight to meet these demands.
Unfortunately, Irish specific information regarding the true epidemiology of psoriasis is sadly lacking, though studies have estimated
that its prevalence is high.9,10 This suggests that we are inadequately informed to manage a silent epidemic with considerable societal
impact, both socially and economically.
The Burden of Psoriasis in Ireland is therefore a timely study that estimates the prevalence of psoriasis in Ireland based on UK
studies. It comprehensively reviews the growing body of knowledge regarding psoriasis and infers the profound impact that psoriasis,
with its co-morbidities, is likely to have on the Irish population.
The Irish Skin Foundation (ISF) is a new organisation that aims to support in all ways possible, to advocate on behalf of, to educate
all involved with, and to bring comfort to those affected by skin disease in Ireland, their families and their carers.11 In particular, the ISF
aims to bring science to society.12 This report supports these philosophies in a manner that will enable significant advocacy for the
large number of patients with psoriasis throughout the country.
Estimates from this study highlight an urgent need to rectify a significant epidemiological information deficit existing in this country.
Without addressing this problem we will be unable to best utilise the promising treatments referred to in this study, which could
significantly alter the outcomes of many of those suffering from psoriasis, each of whom might feel at war with my skin.13 We will also
face an increasingly difficult task of meeting expectations set by well prepared nations, without the means to impact outcomes to any
greater degree than skin deep.
Dr Dmitri Wall
Dermatology Specialist Registrar and Research Fellow with the Irish Skin Foundation
References
1 Baker BS. From Arsenic to Biologicals: A 200 Year History of Psoriasis: Garner Press. 2008.
2 Nestle FO, Kaplan DH, Barker J. Psoriasis. New England Journal of Medicine 2009; 361: 496-509.
3 Bateman T. A Practical Synopsis of Cutaneous Diseases: According to the Arrangement of Dr. Willan, Exhibiting a Concise View of the Diagnostic Symptoms and the Method of Treatment: London:
Longman, Rees, Orme, Brown, Green, & Longman. 1836.
4 Lynch M, Kirby B. John Updike and psoriasis. British Journal of Dermatology 2011; 165: 927-8.
5 Updike J. From the journal of a leper. In: The New Yorker. 1976; July 19; 2833.
6 Christophers E. Co-morbidities in psoriasis. Clinics in dermatology 2007; 25: 529-34.
7 Kurd SK, Troxel AB, Crits-Christoph P et al. The risk of depression, anxiety and suicidality in patients with psoriasis: A population-based cohort study. Archives of dermatology 2010; 146: 891-5.
8 European Commission. eHealth Task Force Report Redesigning health in Europe for 2020. In. Luxembourg. 2012.
9 Farber E, Nall L. Epidemiology: natural history and genetics. BASIC AND CLINICAL DERMATOLOGY 1998; 16: 107-58.
10 Raychaudhuri SP, Farber EM. The prevalence of psoriasis in the world. Journal of the European Academy of Dermatology and Venereology 2001; 15: 16-7.
11 The Irish Skin Foundation website. http://irishskinfoundation.ie/About-Us/mission. In.
12 OBrien E. A Century of Service: The City of Dublin Skin and Cancer Hospital 1911-2011. Dublin: The Anniversary Press. 2011.
13 Updike J. Self-Consciousness: Memoirs. London: Penguin. 1989.
7
The Burden of Psoriasis
Examining the prevalence, incidence, quality of life, related
co-morbidities and treatment goals in Ireland
Approximately
75,000 work days People with severe psoriasis
have 1.8 times greater odds of
are lost to psoriasis in being unemployed compared to
Ireland annually11 those who have mild psoriasis12
56% say they have been the 77% said their 54% report that psoriasis has
target of negative, unpleasant skin made them want to a negative impact on their
comments5 love lives5
hide away 5
Up to 10% report
57% say their psoriasis has
stopped them from doing suicidal ideation 14
depression
13
References:
1. The Impact of Psoriasis in Ireland Epidemiology, Quality of Life, Co-morbidities and Treatment Goals, p 6. 9. Rapp SR, Feldman SR, Exum ML, Fleischer Jr AB, Reboussin DM. Psoriasis causes as much disability as
2. The Impact of Psoriasis in Ireland Epidemiology, Quality of Life, Co-morbidities and Treatment Goals, p 9. other major medical diseases. Journal of the American Academy of Dermatology. 1999;41(3):401-7.
3. Neimann AL, Shin DB, Wang X, Margolis DJ, Troxel AB, Gelfand JM. Prevalence of cardiovascular risk 10. Krueger G, Koo J, Lebwohl M, Menter A, Stern RS, Rolstad T. The impact of psoriasis on quality of life:
factors in patients with psoriasis. Journal of the American Academy of Dermatology. 2006;55 (5):829-35. results of a 1998 National Psoriasis Foundation patient-membership survey. Archives of Dermatology.
4. Haroon M, Kirby B, FitzGerald O. High prevalence of psoriatic arthritis in patients with severe psoriasis 2001;137(3):280-4.
with suboptimal performance of screening questionnaires. Annals of the rheumatic diseases. 2013;72 11. The Impact of Psoriasis in Ireland Epidemiology, Quality of Life, Co-morbidities and Treatment Goals, p 23.
(5):736-40. 12. Armstrong, A.W., et al., Quality of life and work productivity impairment among psoriasis patients:
5. Psoriasis Patient Survey, Ireland. April 2015. findings from the National Psoriasis Foundation survey data 20032011. PloS one, 2012. 7(12): p. e52935
6. Gelfand JM, Dommasch ED, Shin DB, Azfar RS, Kurd SK, Wang X, et al. The risk of stroke in patients with 13. Schmitt JM, Ford DE. Role of depression in quality of life for patients with psoriasis. Dermatology.
psoriasis. The Journal of investigative dermatology. 2009;129(10):2411-8. 2007;215(1):17-27.
7. Gelfand JM, Neimann AL, Shin DB, Wang X, Margolis DJ, Troxel AB. Risk of myocardial infarction in 14. Krueger G, Koo J, Lebwohl M, Menter A, Stern RS, Rolstad T. The impact of psoriasis on quality of life:
patients with psoriasis. Jama. 2006;296(14):1735-41. results of a 1998 National Psoriasis Foundation patient-membership survey. Archives of Dermatology.
8. Gelfand JM, Troxel AB, Lewis JD, Kurd SK, Shin DB, Wang X, et al. The risk of mortality in patients with 2001;137(3):280-4.
psoriasis: results from a population-based study. Archives of Dermatology. 2007;143(12):1493-9.
REPORT: The Burden of Psoriasis
10
REPORT: The Burden of Psoriasis
Introduction
Psoriasis is a chronic, debilitating inflammatory skin disease, characterised by an accelerated rate of turnover of the top layer of the skin
(epidermis). Estimates of prevalence vary from 0.3% of the general population in China, to 3% in parts of Northern Europe (Griffiths
and Barker 2007). Although it is a chronic condition, its course may be variable, with flare-ups and remissions (Woolacott, Hawkins
et al. 2005). The cause of psoriasis is not fully understood but evidence suggests that there is a strong genetic component and that
it is mediated by abnormal T lymphocyte function (Griffiths and Barker 2007). Environmental factors also play a role, and it has been
established that in some cases factors such as emotional stress or infection may trigger the first episode of psoriasis or exacerbations
(Langley, Krueger et al. 2005). The most common form (approximately 90%) of psoriasis is chronic plaque psoriasis (psoriasis vulgaris)
(Griffiths and Barker 2007), which is characterised by well-demarcated, often symmetrically distributed, thickened, red, scaly plaques.
There is considerable variation in both the size and the number of the plaques, which can range from one or two small plaques to 100%
body coverage. Although the plaques can affect any part of the skin, they are typically found on the surfaces of the knees, elbows, and
scalp (Griffiths and Barker 2007).
People with psoriasis often experience difficulties such as low self-esteem, problems in body image, maladaptive coping responses
and also have feelings of shame, stigma and embarrassment regarding their appearance (Augustin and Radtke 2014). As a consequence,
psoriasis is associated with having a debilitating effect on quality of life (QoL) resulting in great strain being placed on the mental
health of many of those who have the condition. Although once viewed as simply a skin disease - psoriasis is now viewed as a systemic
inflammatory disease which is associated with a range of co-morbidities including psoriatic arthritis (PsA), obesity, hypertension,
diabetes and hyperlipidaemia. Evidence supporting the hypothesis that psoriasis is independently associated with cardiovascular (CV)
events such as stroke and myocardial infarction (MI) is mounting. Co-morbidities impact on the general health of those who have
psoriasis and also have the compounding effect of further encroaching on QoL.
As far as this author is aware, no previous study exists which provides estimates for the prevalence, incidence and severity of psoriasis
in Ireland. As a consequence there is a certain gap in the epidemiological information base. There is also a paucity of information with
respect to QoL and the co-morbidities associated with psoriasis within an Irish setting. The aim of this report is to address these deficits
by estimating the epidemiology of psoriasis in Ireland and utilise these estimates to determine the burden of psoriasis in Ireland. The
report is structured as follows:
Chapter 1 presents estimates of the prevalence, incidence and the likely delineation of mild, moderate and severe psoriasis in Ireland.
Chapter 2 examines the impact of psoriasis on quality of life, based on a literature review of current published evidence.
Chapter 3 examines the impact of psoriasis in terms of its related co-morbidities.
Chapter 4 examines the role of newer therapies for psoriasis in enhancing the quality of life of those who have the condition.
12
REPORT: The Burden of Psoriasis
1. Epidemiology:
Estimates of the Prevalence, Incidence and
Disease Severity of Psoriasis in Ireland
In this chapter, estimates are presented for the prevalence and incidence of psoriasis in the Republic of Ireland. In the epidemiological
literature, prevalence is defined as the proportion of individuals in a population who have the disease of interest in a specified time
period, while incidence is a measure of the number of new cases of a disease in a particular time period. Both measures, taken together
provide important information for estimating the impact of a particular condition or illness.
The estimates presented are based on existing evidence from international studies which are then applied to the Irish population.
Estimates of prevalence vary from 0.3% of the general population in China, to 3% of the population in parts of Northern Europe and
Scandinavia (Griffiths and Barker 2007) with estimates of incidence ranging from 5.76 per 10,000 (Bell, Sedlack et al. 1991) to 14 per
10,000 (Huerta, Rivero et al. 2007). The prevalence and incidence estimates in the literature display a degree of variation and the main
factors explaining this variation include: age, ethnicity, and geography (Parisi, Symmons et al. 2013). Higher prevalence rates have been
reported in Caucasians compared with other ethnic groups and the disease is generally more common in the colder north than in the
tropics (Chandran and Raychaudhuri 2010). Another factor when considering the differing estimates of prevalence and incidence is
that differing definitions of prevalence, sampling frames and age groups are utilised in the various study designs (Parisi, Symmons et al.
2013).The manifestation of the disease and its severity also displays a level of heterogeneity. For the majority of patients (approximately
90%), the disease manifests as plaque psoriasis, to the less common superficial pustules scattered on the palms or soles, or in rare cases
widespread pustules on the body (Meier and Sheth 2009). The severity of disease is described as being mild, moderate or severe and
is evaluated by the following measurement tools: the Psoriasis Area and Severity Index (PASI)1; Body Surface Area (BSA)2; Physician
Global Assessment (PGA)3 and in some cases, the severity of disease is linked with various dermatology or psoriasis specific (HRQoL)
instruments (see Table 4). For the purpose of this report, disease severity is in the main, defined by the BSA criteria (see Figure 3).
The methods employed and the results generated from an analysis to estimate the overall prevalence and incidence of psoriasis
in the Republic of Ireland - as well as the likely delineation of mild, moderate and severe levels of disease within the Irish psoriasis
population, are presented in the following sections of this chapter.
1. The Psoriasis Area Severity Index (PASI) is an index used to express the severity of psoriasis. It combines the severity (redness, thickness and scaliness) and percentage of affected area, with the scores
applied ranging from 0 to 72.
2. Body Surface Area (BSA) is the arithmetic mean of the affected skin surface based on the assumption that the surface area of a patients hand represents 1% of BSA.
3. Physician Global Assessment (PGA) is an intuitive assessment performed by the physician and the scoring is applied with a 7-point scale ranging from clear to severe.
4. The GPRD is a primary care database which contains information on over 8 million patients in the UK. The database captures approximately 5% of the UK population, which is broadly representative
of the general UK population in terms of age, sex, and geographic distributions
13
REPORT: The Burden of Psoriasis
Age Group Total Irish Males Total Irish Females Males % Females % Males: Psoriasis Females: Psoriasis Total: Psoriasis
Weinstein et al. 2005). As a breakdown by age and by sex was available in this study, it was possible to adjust the prevalence rates to the
Irish age and sex profile, consistent with most recent Irish census figures (2011). Doing so provided for an estimate of 1.6% for Ireland.
According to this estimate we might reasonably expect there to be 73,205 people living with psoriasis in Ireland (Table 1)
While serving as a good guide to the prevalence of psoriasis in Ireland, the estimate reported here should however be viewed as
being a conservative one. The reasons for this are twofold: firstly, the UK study which formed the basis of this analysis, estimated the
prevalence of those who had received a diagnosis of psoriasis from their GP; it seems probable that there remains a proportion of the
population with psoriasis who remain undiagnosed. Indeed, in Kurd et al (2009), the authors estimate the prevalence of undiagnosed
psoriasis in the adult population between 0.4% and 2.28%. The conservative estimate is based on a requirement that a diagnosis be
agreed on by two dermatologists, while the 2.28% figure required confirmation by a sole clinician. Secondly, while adjusting for age
and sex may be expected to capture most of the variation between the populations of the UK and Ireland with respect to the prevalence
of psoriasis, one may have concerns about the natural congruency of these populations with regard to ethnic heterogeneity. Indeed as
of 2011, Irelands population was 95% Caucasian (2011) whereas in the UK this figure was 86% . As higher prevalence rates have been
Age
>85 Age
80-84 >85
70-79 80-84
60-69 70-79
20-29 30-39
10-19 20-29
0-9 10-19
0-9
8,000 6,000 4,000 2,000 2,000 4,000 6,000 8,000
8,000 6,000 4,000 2,000 2,000 4,000 6,000 8,000
Number of people with psoriasis
Number of people with psoriasis
Figure 3. Body Surface Area
14 Figure adapted from Gelfand et al (2005) using CSO 2011 figures.
Figure 3. Body Surface Area
PSORIASIS COVERAGE & SEVERITY
PSORIASIS COVERAGE & SEVERITY Figure 5. PsA population
REPORT: The Burden of Psoriasis
Age Total Irish Males Total Irish Females Males Females Male Female Total
per 10,000 per 10,000 Psoriasis Psoriasis
reported in Caucasians compared with other ethnic groups (Chandran and Raychaudhuri 2010) this may lead to an underestimate
of the Irish prevalence figure. The primary estimates were left unadjusted for race in this analysis due to limited data regarding the
required adjustment. However, for readers interested in the approximate estimate of the potential underestimate, a simple approach
to the adjustment would suggest approximately an underestimate of approximately 5.2%. Therefore, the age, sex, and race-adjusted
estimate for Ireland would be 1.7%, providing for a figure of 77,012 people living with psoriasis in Ireland (see Table 16).
Figure 2. The incidence of psoriasis in Ireland stratified by age & sex More than 9,000
people in Ireland
Age suffer with severe
80 psoriasis*
70-79
60-69
50-59
Male
40-49 Female
30-39
20-29
0-19
Age
>85
Age
The incidence estimate of 13.5 per 80-84
10,000
>85 suggests the numbers of those with psoriasis are likely to increase into the future. An upward
trend has previously been identified70-79
in80-84
the literature. For example, Icen et al (2009) estimated that the annual incidence of psoriasis
almost doubled between the 1970s and 2000 from 5.08 to 10.5 per 10,000. Factors such as changes in lifestyle and environmental
60-69
70-79
factors are offered as explanations for this upward trend. However, it is also likely that part of this increase may be due to changes in
50-59
the diagnosing patterns over time and 60-69
an increased awareness of the disease. Male
It may be the case however, that while the prevalence
estimate may be conservative in nature,50-59
the incidence estimate may overestimate Male
40-49 the numbers at risk of developing psoriasis annually.
Female
0-9
10-19
80+
70-8080+
70-80
60-69
60-69
50-59
Ma
50-59
40-49 Fem
40-49
30-39
1% = Surface area of the handSource: www.psoriasis.org 1,500 1,000 500 500 1,000 1,500
Source: www.psoriasis.org
Figure 4. Psoriasis and alcohol a vicious cycle
Figure 6. The Psoriatic March
16 Figure 4. Psoriasis and alcohol a vicious cycle
Alcohol Figure 6. The Psoriatic March
REPORT: The Burden of Psoriasis
1.3 Estimates of those with mild, moderate and severe levels of psoriasis
In Yeung et al (2013), the authors estimated the levels of severity of psoriasis for the UK. This study was used as the basis to estimate
the levels of mild, moderate and severe psoriasis in Ireland. In the UK study, psoriasis severity was determined by the process of a self-
reported questionnaire according to the Body Surface Area criteria (Figure 3), in 8,726 patients, among whom 4,523 (51.8%) had mild,
3,122 (35.8%) had moderate, and 1,081 (12.4%) had severe psoriasis. The breakdown of the levels of mild, moderate and severe disease
was then applied to the estimated prevalence figures for Ireland. The estimates of those with mild, moderate or severe psoriasis for
Ireland are displayed in Table 3.
We estimate that there may be in excess of 9,000 people in Ireland with severe psoriasis. This represents a significant number
of people who are heavily impacted by the disease. Those with severe psoriasis experience poorer quality of life and are more likely
to have co-morbidities such as psoriatic arthritis, cardiovascular disease and depression compared to those with the mild form of
the disease (Kurd, Troxel et al. 2010, Ogdie, Langan et al. 2013, Yeung, Takeshita et al. 2013) . The severity of disease also impinges on
peoples work-lives, as according to research conducted in the US, people with severe psoriasis have 1.8 times greater odds of being
unemployed compared to those who have mild psoriasis (Armstrong, Schupp et al. 2012).
1.4 Conclusion
New estimates generated in this study indicate that psoriasis affects a large number of people in Ireland. In terms of prevalence, the
estimate reported here provides for a figure of 73,205 people living with psoriasis in Ireland. With respect to incidence, there may be
up to 6,167 people being diagnosed with psoriasis each year. Within the psoriasis population an estimated 12.4% have severe psoriasis.
Furthermore, these numbers are likely to increase in the coming years as an upward trend has been identified in the prevalence and
incidence of the disease internationally (Icen, Crowson et al. 2009, Danielsen, Olsen et al. 2013). Nonetheless, as the estimates reported are
based on population based epidemiological UK studies; future research would benefit from similar such studies for the Republic of Ireland.
17
REPORT: The Burden of Psoriasis
5. EQ-5D is a standardized instrument for use as a generic measure of the quality of health-related
life and of health outcome. It is particularly associated with the QALY (quality-adjusted life-year). It
is designed for self-completion by respondents and is suited for use in postal surveys, clinics and
face-to-face interviews. The EQ-5D has five dimensions: Mobility, Self-care, Usual activity, Pain/
discomfort, Anxiety/Depression. The traditional EQ-5D instrument described each dimension in
terms of three levels: 1- no problem, 2 - some problem, 3 - extreme problem. In each case, the
instrument comprises two parts: respondents rate their health on the dimensions/levels and record
an overall assessment of their health on a visual analogue scale, the EQ-VAS.
quality of life
Psoriasis affects health-related quality of life to
an extent similar to the effects of depression,
myocardial infarction, hypertension and even
some cancers*
18
REPORT: The Burden of Psoriasis
Psoriasis-specific questionnaires
Salford Psoriasis Index Clinical PASI, Psychosocial Impact Score, Historic Disease Severity Score 3
Psoriasis Qol Questionnaire and PQOL 12 Psychosocial and physical domains covering self-consciousness, helplessness, 41
embarrassment, anger/frustration, emotional wellbeing, capacity to enjoy life,
itching, physical irritation, pain soreness, and influence on choice of clothing
Dermatology-specific questionnaire
Dermatology Life Quality Index (DLQI) Symptoms/feelings, daily activities, work/school, personal relationships, treatment 10
examples of which, for psoriasis, are outlined in Table 4. Psoriasis-specific HRQoL measures are designed to assess in detail domains
of HRQoL that are specifically affected by psoriasis and to facilitate between-or-within-treatment comparisons. They are designed to
increase the sensitivity to detect small but clinically important differences in HRQoL.
The DLQI, while not psoriasis specific, is the most commonly used HRQoL measure in the assessment of psoriasis. The DLQI
is commonly used in clinical practice, and according to European guidelines, it is a necessary tool to assess psoriasis severity and
treatment success (Mrowietz, Kragballe et al. 2011). A set of DLQI score bands has been proposed according to a global question (GQ)
score: DLQI = 01 implies no effect on patients HRQoL (GQ = 0), and DLQI = 25 implies a small effect on patients HRQoL. The index has
a ceiling of 30, with the effect of the disease on QoL increasing as the DLQI score increases6 (Puig 2014).
The impact of psoriasis on patient reported outcomes (PROs) and HRQoL has been investigated in several studies and has been
shown to be similar to that for other chronic diseases such as depression, post-myocardial infarction, congestive heart failure, and even
some cancers (Rapp, Feldman et al. 1999) . When compared with other dermatologic conditions, psoriasis appears to have less impact
on HRQoL than atopic dermatitis , but more impact than acne, basal cell carcinoma, or viral warts (Woolacott, Hawkins et al. 2005). The
impact on physical domains appears to be greater than for people with hypertension or diabetes (Rapp, Feldman et al. 1999). The key
elements that determine HRQoL in patients with psoriasis are presented in (Table 5)
In 2002, the largest survey to date conducted in Europe with respect to the quality of life of people with psoriasis took place, with
18,368 responses from seven European countries (Dubertret, Mrowietz et al. 2006). The results from this survey highlight the burden
placed on the daily lives of those who have the condition. In particular, respondents reported difficulties with respect to clothing
choice, bathing routine and sporting activities (see Table 6)
Physical factors Itching, irritation, Pain, Insomnia, Inability to use hands or legs
Psychological and social factors Self-consciousness, embarrassment, anger/frustration, stigmatisation, depression, capacity to
enjoy life, and influence on choice of clothing
Sexual factors Feeling physically unattractive - leading to less sexual activity, concern about a new partners
reaction to the disease
Occupational factors Day of work missed, fewer opportunities in jobs which appearance is critical
Physical and psychosocial co-morbidities Psoriatic arthritis, Cardiac disease, Diabetes, Depression
Alcohol misuse, Obesity
6. Meaning of DLQI Scores: 0-1 = no effect at all on patients life,2-5 = small effect on patients life, 6-10 = moderate effect on patients life, 11-20 = very large effect on
patients life, 21-30 = extremely large effect on patients life. 19
REPORT: The Burden of Psoriasis
It appears that the physical manifestation of the disease makes life difficult for people by restricting clothing choice and participation
in physical activities (e.g. sports, which may affect skin through sweating, bleeding or increasing its visibility) and increasing bathing
frequency, which may be related either to coping with the symptoms of psoriasis or to the use of topical treatments. Perhaps one of
the most striking results from this questionnaire, was that overall, 77% of the respondents reported that psoriasis was a problem or a
significant problem in conducting the activities of daily life. This implies that psoriasis places a large strain on over three quarters of
those who have the condition in an Irish context, this may represent in excess of 56,000 people who feel that psoriasis encroaches
on their ability to conduct their daily lives (Dubertret, Mrowietz et al. 2006).
Table 7. Psychological and daily living activities affected in people with psoriasis
Sitting for long periods 7,010 7% 1,307 11% 2,802 15% 2,900
plaques may be contagious. 57% of the respondents in the survey reported that others had mistaken their psoriasis as being contagious.
Incidences such as these are likely to place a heavy burden on the emotional well-being of those with the condition and combined
with the reported problems in developing relationships both sexual and in terms making/keeping friends people with psoriasis may
become deeply affected by the disease. As a consequence, nearly 7% of the respondents of the survey reported contemplating suicide
because of their condition. Those in the younger age groups experienced feeling the greatest impact, with 10% of those aged 18 to 34,
disclosing incidences of suicidal ideation. In this chapter, questionnaire data from a US study was adapted to fit the Irish population.
While this offers an insight to the potential burden psoriasis places on QoL, future research would benefit from carefully constructed
questionnaire based studies. Research using Irish registry-based data, may offer an ideal approach for such studies.
7. Attributable risk is the proportion of disease risk or incidence that could be eliminated from the population if exposure were eliminated.
21
30-39
MILD MODERATE SEVERE 18-29
Less than 3% ofMILD
the 3% 10%MODERATE
of the More than 10%SEVERE
of the 18-29
body has psoriasis body has psoriasis body has psoriasis
Less than 3% of the 3% 10% of the More than 10% of the
REPORT: The
body hasBurden of Psoriasis
psoriasis
1% = Surface body hasthe
area of psoriasis
hand body has psoriasis 1,500 1,000 500 500 1,000 1,500
1% = Surface area of the hand 1,500 1,000 500 500 1,000 1,500
Source: www.psoriasis.org
Source: www.psoriasis.org
PSORIATIC MARCH
Relieve symptoms of & compliance INFARCATION
anxiety and depression Smoking Hangover period ATHEROSCLEROSIS
PSORIATIC MARCH
Treatment & compliance
Smoking ATHEROSCLEROSIS
ENDOTHELIAL DYSFUNCTION
Increased inflammatory Neuropsychological
cell response
Increased inflammatory Psoriasis effects
Neuropsychological
ENDOTHELIAL DYSFUNCTION
INSULIN RESISTANCE
cell response Psoriasis effects
INSULIN RESISTANCE
Increased Persistant SYSTEMIC INFLAMMATION
inflammatory psychological
cell response Increased Persistant
stress SYSTEMIC INFLAMMATION
inflammatory psychological SEVERE PLAQUE-TYPE PSORIASIS
cell responseAdverse effects on cardiovascular stress
physiology impaired health SEVERE PLAQUE-TYPE PSORIASIS
Adverse behaviour
promoting effects on cardiovascular Source: Boehncke et al, 2014
Cardiovascular physiology impaired health Depression
Source: Boehncke et al, 2014
disease
Cardiovascular
promoting behaviour & anxiety Depression
Emotional stress of & anxiety
Up to 32% suffer
disease
negative life events
Emotional stress of with depression*
negative life events
females than in males, beginning at mid-puberty and persisting through adult life (Piccinelli and Wilkinson 2000). To account for this
juxtaposition, the authors point to the high rates of excess alcohol consumption in men with psoriasis, a hypothesis which has been
posited in a number of studies (Poikolainen, Reunala et al. 1990, Tobin, Higgins et al. 2009, Hayes and Koo 2010). The suggestion here
is that men may be more likely to use alcohol excessively, to cope with the psychosocial burden of psoriasis and consequently are
at a higher risk of developing depression with the alcohol misuse and psoriasis as underlying causes. The relationship between
alcohol and psoriasis is frequently discussed in the literature with most of the studies concluding that alcohol consumption is higher in
psoriasis patients than in the general population (Brenaut, Horreau et al. 2013). In Kirby and colleagues (2008), the authors discovered,
in a cohort of Irish psoriasis patients with moderate to severe psoriasis, that between 17% and 30% of patients were classified as having
difficulties with alcohol (Kirby, Richards et al. 2008). The same study also found an association between increased alcohol intake and
psoriasis severity. There is also evidence to suggest that this excessive alcohol consumption may be a risk factor for the development of
psoriasis (Poikolainen, Reunala et al. 1990). In an Irish study of 100 patients with alcoholic liver disease, the authors found a 9% to 15%
prevalence of psoriasis, which is much higher than the prevalence of 1% to 3% in the general population. (Tobin, Higgins et al. 2009).
Furthermore, excessive alcohol consumption is associated with cardiovascular disease, an association which further compounds the
negative relationship between psoriasis and alcohol (Adamzik, McAleer et al. 2013).
3
Meyer et al (2010) France 590
1. In a Finnish study of 262 moderate to severe psoriasis patients, on average, the patients in active work had had 16.8 hours of sick
leave during the previous 4 weeks, and 27.0% of the total hours of sick leave (4.5 hours) were due to psoriasis (Mattila, Leino et al.
2013). The overall presenteeism 8 hours during the same time period was 21.2 hours, of which 39.0% were because of psoriasis.
More than a quarter (28.9%) had been forced to modify their work due to psoriasis, most frequently to reduce work induced skin
irritation. This was found significantly more often among blue collar than white collar workers. Overall, 8.6% of workers had changed
their working place or occupation because of psoriasis (Mattila, Leino et al. 2013).
2. In a Canadian study of 90 subjects diagnosed with psoriasis in three dermatology clinics in British Columbia, Ontario, and Quebec,
the mean number of work days missed per subject due to psoriasis (19.4 days) was almost twice the national average for the general
population reported in 2007 by Statistics Canada (10.2 days) (Levy, Davie et al. 2012).
3. To assess the impact of psoriasis on work-related problems in Italy, a survey was conducted with 787 patients (64% male, mean age
50 years) from 29 different dermatological centres, evenly distributed around the country (Ayala, Sampogna et al. 2014). In 42%
of cases, psoriasis reduced the prospects of improvement in employment status and 35% of patients reported reduced earning
potential. Approximately 60% of patients reported that psoriasis localised to their hands or feet caused work limitations, whilst in
about 25%, it caused them to quit their job. In the three months prior to the survey, 29.3% of patients lost 35 days of work, 7.3% lost
610 days and 7.1% more than 10 days, due to clinical check-ups or psoriasis-related therapy (Ayala, Sampogna et al. 2014).
4. Regarding work days lost, a UK study of 369 severe psoriasis patients reported that of the 150 patients in employment, 59.3% had
lost a mean of 26 days (SD 21.9) from work during the preceding year because of their psoriasis, and of the 180 not working 33.9%
attributed it to their psoriasis (Finlay and Coles 1995).
5. In a French study which evaluated the disease burden in 590 psoriasis patients, over 19% of employed patients with severe psoriasis
reported workplace discrimination (10.0% for mild patients; p = 0.038) and 24.8% reported that psoriasis affected their choice of
career (9.8% for mild patients; p = 0.002). Moreover, 11.5% of patients with severe psoriasis thought that psoriasis was the reason for
a loss of salary, and patients in employment reported missing an average of three working days per year because of their psoriasis
(Meyer, Paul et al. 2010).
6. At the time of this epidemiological evaluation, a German study reported that 39.7% of the patients did not work and 6.8% of the
patients were unable to work because of their plaque-type psoriasis. Employed patients (n=911) had lost a mean of 4.9 workdays
due to psoriasis. Overall, 102 patients (6.8%) were unable to work due to their plaque-type psoriasis for, on average, 101.4 days.
Psoriasis severity was associated with increase in the number of working days lost (Augustin, Krger et al. 2008).
7. In an evaluation of the cost of psoriasis in Spain, a total of 797 patients with varying demographics and severity of psoriasis (mean
age 44.3, mild - 70.5%, moderate - 19.1% and severe - 10.4%) were required to record the number of hours and/or days of work that
had been lost as a direct result of their psoriasis. The patients reported that at least one lost working day was registered in 52 patients
(6.5%) with a mean of 2.3 days (range 0360) per patient per year (Carrascosa, Pujol et al. 2006).
8. Presenteeism is defined as lost productivity because of illness or other medical conditions while working. 23
REPORT: The Burden of Psoriasis
For an approximate estimate of the potential levels of absenteeism in Ireland; a simple approach is to use the Spanish estimate
of 2.3 days per year and on the basis of using the Irish employment rate for the year 2011 (59.2%) (OECD, 2014), apply that figure
to the prevalence of the condition in the age group 16 to 64. This would suggest that approximately 75,000 additional days of work
are lost due to psoriasis in Ireland annually.
The literature review conducted on the impact of psoriasis on the work-lives of those who have the condition further demonstrates
the debilitating impact of the disease. The impact of the disease is multi-faceted in nature with the working lives of those with the
condition being affected with respect to absenteeism, presenteeism, work place discrimination and restriction of career choice. In
terms of absenteeism, the results vary from 26 days in the UK to 2.3 days in Spain. The variation in the results is largely due to the
heterogeneity in the severity of disease experienced by the various study populations. The UK study based its estimate on a population
of severe patients hospitalised due to their psoriasis, whereas the Spanish population is more representative of the general population
as it enrolled a larger number of patients with varying degrees of psoriasis. Therefore an estimate of the levels of absenteeism in Ireland,
based on the Spanish estimate of 2.3 days per year, suggests that approximately 75,000 additional days of work are lost due to psoriasis
annually. While this represents a productivity loss to society, it also points to a loss of earnings for the individual person who has the
condition. Indeed, multiple studies examine the relationship between psoriasis, symptom severity and income. These studies highlight
that income is negatively correlated with psoriasis severity, with people with more severe forms of the condition, on average, earning
less than those with mild disease (Horn, Fox et al. 2007, Hawro, Zalewska et al. 2014). This may be in part due to symptom or treatment
induced absenteeism; however, it may also be due to a perceived restriction in career choice/trajectory.
Taken individually and together, this literature gives a sense of the wider societal impact of psoriasis, and the resultant reductions
in quality of life, and on labour force participation. These effects are likely to have important economic implications for the individual
affected, their families, and society as a whole.
2.6 Conclusion
Psoriasis places a considerable burden on those who have the disease. In this chapter, we examined the impact on the quality of life
of the individual. The literature review conducted in this section highlights the impact of psoriasis on HRQoL and on mental health.
It seems that these effects manifest due to the physical factors associated with the disease and on the location and visibility of the
body involvement, causing self-consciousness, embarrassment and stigmatisation which can ultimately lead to depression and in
some cases suicidal ideation. Psoriasis also impacts on the work-lives of those who have the condition with reports of absenteeism,
presenteeism, work place discrimination and restriction of career choice all associated with psoriasis. These effects are likely to have
important economic implications for the individual affected, their families, and society as a whole.
24
REPORT: The Burden of Psoriasis
The findings illustrate the wide-reaching impact that this skin With regard to personal life, the survey revealed that over half
disease can have on all aspects of patients lives, and the negative (54%) confirmed that their psoriasis has had an impact on their
emotions that can be felt by those living with psoriasis. Of the love life, and a third (33%) of respondents admitted that their skin
119 respondents, the majority were female (77%), and the largest has prevented them from dating.
group to answer the survey were those aged 34 to 41 years of age. One in five (21%) admitted that their psoriasis has stopped
An overwhelming number of those affected (93%) have them from applying for a job clearly demonstrating the
felt embarrassed by their psoriasis, with 58% admitting their destructive effect that the skin disease can have on a persons
psoriasis has stopped them from doing activities they enjoy. 73% career prospects.
agreed that their psoriasis has negatively impacted on their Worryingly, 56% of those asked have been the target of
social life, and social isolation was further highlighted with 77% negative comments from other people. This statistic highlights
admitting their skin has made them hide themselves away. the lack of awareness and ignorance surrounding psoriasis and
Interestingly, the results also highlighted the impact psoriasis the impact this can have on a sufferers confidence in social
can have on consumer behaviour. 89% of patients confirmed situations.
that their psoriasis determines the products they buy. The vast Finally, the survey investigated how people feel about their
majority (86%) agreed their psoriasis affects the choice of clothing psoriasis and what words they would use to describe it. The four
they wear, as many people with psoriasis avoid wearing dark most common descriptions are: embarrassing (44%); itchy (41%);
clothing due to flaky skin becoming more visible. self-conscious (39%); and annoying (32%).
25
I realised that there was so much
happening in the world of psoriasis
so much that the average patient
knew nothing about
REPORT: The Burden of Psoriasis
Case study 1
I have an actor friend, a fellow psoriasis sufferer, who often jokes eczema has a better agent. He has a point, as until I was diagnosed I
had never heard of psoriasis. When I went to my GP with a strange rash on my leg almost twenty years ago, I certainly never thought
that this was to be the start of a long and often soul destroying battle with my skin.
Psoriasis impacts every area of life. Physically it can be sore and itchy, not to mention disruptive on a day to day basis. Theres the
time-consuming application of creams and emollients each day: the fatigue from sleepless nights due to inflamed skin; choosing
clothes that will be gentle on angry plaques; the constant battle against the flaking - that tell-tale sign of our condition. And then there
are the flare-ups! Psoriasis on the inside of my ear caused months of partial deafness frustrating and incredibly difficult to get rid of.
Some years later, it appeared on the soles of my feet, which caused me to limp for months on end and also meant I could no longer
exercise properly. There was the occasion when I got sunburnt in my own back garden oh the irony! Sunburn in Ireland. This resulted
in a flare up that was so severe, I was forced to miss three weeks of work.
Yet quite often it is the emotional impact of this disease that really affects patients. With skin that is flaking, inflamed and unsightly,
dressing becomes an exercise in comfort and concealment. The fear of people staring leads to avoidance of places like the gym or
swimming pool. Social situations can make a sufferer feel self-conscious. In essence, psoriasis can drag you down. It is a disease that is
certainly more than skin deep.
The problem was that for so long I thought of it as a skin disease. I didnt realise that it is so much more than that; an inherited
autoimmune disorder. I was convinced that if I could just get the right combination of ointments and balms, I would win this battle. I
left no stone unturned, going down the road of both conventional and alternative medicines. I applied every known steroid cream to
my skin. I spent a small fortune on lotions and potions in the local health stores. I travelled to the International Psoriasis Clinic in the
Dead Sea. I did the UVB phototherapy treatment four times. I took every mineral, vitamin and fish oil supplement imaginable. I even
flew to Paris to meet a doctor who claimed diet was the answer. And so for the next few years, I embarked upon a dairy-free diet, a
gluten-free diet, a salt-free diet, a processed-free diet and an organic only diet.
But still the psoriasis remained. And with it, the cycles of hope and disappointment. Hope that the next cure would work.
Disappointment when yet again the cure failed. But at the same time, I was one of the lucky ones! I may have had psoriasis, but it didnt
lead to depression. I have never been so embarrassed by my skin that I have refused to leave my house. I have never felt that people
have shunned me because of my skin. I have never been hospitalised. I have never been at such a despairing level that I have had
suicidal thoughts. Unlike many other sufferers, I have not endured the extreme mental anguish that this disease can cause.
But I read of others who had and so, spurred on by my belief that fashion can positively impact how you feel about yourself, I started
my blog The Flaky Fashionista in 2012. This was born out of a personal frustration at the lack of available advice on how to dress around
a skin disease, but also a desire to show fellow sufferers that psoriasis does not need to define us. It is but a small part of our far more
interesting lives.
When I went online to research psoriasis I had been shocked by how relentlessly miserable each site was. Every page I clicked on
repeated the same message Psoriasis Cannot be Cured. There was no hope, no optimism. And patients need to have hope! So I decided
that I would try and counter this negativity; that from my little corner of the internet I would bring some levity, some humour and some
optimism to what is a rather depressing subject. I gave myself some rules that I never wavered from. There would be no pictures of my
skin, or indeed of anyones skin. I would always stay positive. I would keep the tone light. I would try and bring hope to others. And I
would always, always be honest.
When I started my blog, my message was clear. We have this disease but we must not let it define us! This is how we disguise it!
As someone who had almost become resigned to never having clear skin, I was focused on how to live a normal life despite it. But as
time passed, I began to learn more about psoriasis. Because of my blog, I was invited to events; I spoke to other sufferers; I spoke to
pharmaceutical companies; I spoke to dermatologists. And I realised that there was so much happening in the world of psoriasis so
much that the average patient knew nothing about. From a strong anti-medication stance, I was persuaded to change dermatologist
and to embark upon a course of biologics. I became educated on the pros and cons of medication and of the variety of options open
to patients. I became convinced that it is no longer acceptable for psoriasis patients to have to suffer with their skin.
The blog that I had started with the aim of changing the opinions of others, had ended up changing me! Because after some trial
and error, I found a biologic that began to work. For the first time in 16 years, my skin is almost completely clear. My message has
evolved. Yes, I still talk about how to dress to conceal your psoriasis because I continue to believe that if you know you look good, it will
have a positive impact on you feel about yourself. And this message will never change, because there will always be psoriasis sufferers
who want to hide their skin. But now my message includes a new call to action. Its a call to all sufferers to find the right dermatologist,
one who understands psoriasis. I want other patients like me to understand that there is help and that although there is no one cure
fits all, there are still so many options that can work. In essence, I suppose I want to become that agent; to promote awareness and
equip patients with knowledge. I want to share with every patient the fact that having psoriasis no longer has to be the miserable life
sentence that it once was.
27
frustration
HOPE
debilitating
treatment
discomfort
relief
Pain
severe positive
difficult
flare-up
Case study 2
I was first diagnosed with psoriasis when I was 29, I woke up one morning with an itchy scalp and it got worse and worse so I went to
my GP to see what he thought. He told me it was psoriasis. I had heard about psoriasis before and was familiar with the skin condition
as my brother had it quite severely.
My own psoriasis progressed very rapidly; it got worse and worse each day, and spread very quickly to the rest of my body until it
affected most of my body. Around that time I was working as a general manager in a clothing company, managing 350 staff members
and was very successful. But unfortunately I had to leave the job as my psoriasis became worse and I wasnt able to manage. My hands
were covered in psoriasis; I had lumps on my face and neck and found it very awkward to hide. I was very aware of it and my skin would
flake off everywhere, on my clothes and everywhere around me.
After six to seven months I applied for a trial with a professor in Hume Street Hospital who was studying patients with psoriasis.
I went to Hume Street Hospital three days a week for light therapy for three months. At that stage 75% of my body was covered in
psoriasis, including my finger and toe nails, and it was very painful. The light therapy annoyed my skin but it did clear up my psoriasis
for a short while.
However, it came back even worse and soon afterwards my body was 85-90% covered in plaques. I found it very difficult to sit down
and difficult to move as my skin was so sore and tight; my clothes would be blood-stained by the end of the day. I was constantly
moisturising my skin as often as I could but nothing helped.
In 2003, my mother passed away and my psoriasis became even worse. I went in to the hospital clinic straight after her funeral and
was given light therapy by my dermatologist to control my skin condition.
My dermatologist was involved in a trial for a new treatment at the time and I was put on the trial. After the third injection it started
to work and I remained on the drug for three years. It worked very well for me. The treatment cleared my psoriasis, I lost weight and I
felt great. However after a while I stopped using the treatment.
Around this time I developed pneumonia and my psoriasis flared up again and became very bad. I continued to use bath treatments
and light therapy. I was put on a different treatment and had to use moisturising cream constantly as well. It worked for a while but the
treatment gradually stopped working for me.
Over the years I have had to take a lot of time off work due to my psoriasis. I have worked in various industries in a variety of roles
but was always terrified that my psoriasis would come back. At home, my clothes and sheets were always ruined. It had a very negative
effect on all of my relationships.
I would describe my psoriasis as a monster.
My whole life has been taken up by my psoriasis, constantly trying to manage it and treat it all day long. I have spent the maximum
amount of money I could on medication, moisturisers and treatment and at times I have felt very low. At one stage I didnt care if I lived
or died, there was no relief from this condition. It was an incredibly debilitating disease for me and when my brother got bowel cancer
I compared our situations wishing I had that rather than my psoriasis.
In 2014, I began a new treatment and it started working after just two injections. I had not been on any treatment for seven to eight
weeks beforehand so my skin was extremely bad and I felt like I was walking like a robot as my skin was so tight.
My psoriasis has completely cleared up and I dont need to moisturise or take treatment baths with this treatment which is incredible.
I have so much more time now without constantly having to look after my skin all day. Before now I was going to the hospital skin clinic
five days a week, but now I only need to visit once a month. I am very happy I signed up for the trial and am lucky to be receiving such
a good treatment. I am much more positive now about my psoriasis.
29
REPORT: The Burden of Psoriasis
30
REPORT: The Burden of Psoriasis
3. Co-morbidities
3.1 Introduction
In this chapter, we examine the impact of psoriasis in terms of its relationship with a range of other conditions. Notably, while traditionally
viewed exclusively as a skin condition, psoriasis is now recognised as a systematic inflammatory condition associated with a range of
related co-morbidities (Coumbe, Pritzker et al. 2014).
We estimate the impact of psoriasis presented in Chapter 1 and Chapter 2 by examining its impact on the number of co-existing co-
morbidities in the Irish setting. For example, psoriasis is associated with psoriatic arthritis (PsA) and other co-morbid diseases and risk
factors, including obesity, metabolic syndrome, cardiovascular disease (CVD), stroke, and depression; as well as smoking and alcohol
abuse. The pathophysiological or genetic association between psoriasis and PsA is considered stronger than that of the other related
co-morbidities (Strohal, Kirby et al. 2013). However, there is mounting evidence demonstrating that psoriasis may not only be just
associated with the increased prevalence of cardiovascular risk factors, but may also be an independent risk factor for the development
of cardiovascular diseases (Coumbe, Pritzker et al. 2014).
The suggestion that psoriasis is associated with obesity, CVD, metabolic syndrome and diabetes, comes in part from chronic Th-1
inflammation that is a shared characteristic of these conditions (Langan, Seminara et al. 2012).
People with psoriasis-related co-morbidities also experience a compounding effect on their quality of life. Furthermore, evidence
from an American study suggests that psoriasis patients with co-morbidities are more likely to need urgent care or hospitalisation,
compared with patients without co-morbidities (Kimball, Guerin et al. 2011). Moreover, an Italian study reported that the numbers
of days lost at work was not only associated with the severity of psoriasis but also with the number of existing co-morbidities (Vena,
Altomare et al. 2010).
Taken together, this literature highlights the extent of the issue and informs the motivation to quantify the co-morbidity burden for
Ireland. To this end, data estimates from large population-based clinical databases which have formed the basis for much epidemiologic
research in psoriasis, co-morbidities were obtained and applied to Irish prevalence estimates in an effort to examine psoriasis-related
co-morbidities in the Irish context.
31
6,000 8,000
6,000 8,000
Up to 30% of people
80+
with psoriasis may also
80+
70-80 have psoriatic arthritis*
70-80
60-69
60-69
50-59
Male
50-59
40-49 Female
Male
40-49 Female
30-39
E 30-39
18-29
% of the
18-29
riasis
of the
1,500 1,000 500 500 1,000 1,500
iasis
psoriasis.org 1,500 1,000 500 500 1,000 1,500
Figure adapted from Ogdie et al (2013) using CSO 2011 figures.
soriasis.org
Figure
In order to6. The Psoriatic
estimate March of PsA in Ireland, we again turned to our nearest neighbour estimates and applied them to the
the prevalence
Irish setting.
Figure 6.InThe
Ogdie et al (2013),
Psoriatic Marchthe authors utilized The Health Improvement Network (THIN) database and estimated the prevalence
of psoriatic arthritis in the UK, among a population of almost 4.8 million patients between 18 and 90 years of age. 9,045 patients were
found to have a diagnostic code for PsA, yielding a prevalence estimate of 0.19%. A breakdown by age and by sex was available in this
MYOCARDIAL
INFARCATION
study, so it was possible to adjust the prevalence rates to fit the Irish age profile consistent with 2011 Irish census figures. Doing so
MYOCARDIAL
PSORIATIC
effects
nt is generalisable the wider INSULIN
SYSTEMIC RESISTANCE
population (ie. 18 to 90). A further assumption here is that those who have PsA must also have psoriasis. There
INFLAMMATION
MARCH
hological
seems to be a level of ambiguity present in the literature in this regard, in relation to this assumption a number of studies posit that, by
tess SYSTEMIC INFLAMMATION
SEVERE
definition, all patients with PsAPLAQUE-TYPE
must havePSORIASIS
psoriasis (Gladman, Antoni et al. 2005, Lee, Mendelsohn et al. 2010). However, in Fitzgerald &
ological
ss Winchester (2009), SEVERE
the authors assert that the presence of either psoriasis or PsA in a family member of a patient suspected of having
PLAQUE-TYPE PSORIASIS Source: Boehncke et al, 2014
pression PsA, provides support for the diagnosis. While this assumption does not affect the estimated prevalence of PsA in Ireland, it may have
anxiety Source: Boehncke et al, 2014
pression
anxiety
Table 9. Prevalence of PsA in Ireland
Age Group Total Irish Males Total Irish Females Male % Female % Males Females Total Total %
32
REPORT: The Burden of Psoriasis
% Mild, Moderate & Severe with PsA 28% 39% 33% 100%
PsA Population as a % of the Pso population (18+) 6.11% 12.32% 30.09% 11.30%
the effect of overestimating the PsA population as a proportion of the psoriasis population.
In Ogdie et al (2013), the authors also considered predictors of prevalent PsA among psoriasis patients in the 45 to 65 age category.
Having controlled for BMI, duration of psoriasis, smoking, age and sex, patients with more extensive skin psoriasis had a significantly
higher prevalence of PsA: those with severe and moderate psoriasis had 3.34 and 1.49 times increased odds respectively of having PsA
compared with those with mild disease.
People with PsA, typically demonstrate poorer HRQoL scores than those with psoriasis alone. A Canadian study reported that patients
with PsA had a poorer QoL compared with psoriasis patients, as measured with the HAQ, SF-36, EQ-5D, and Fatigue Severity Scale
(Rosen, Mussani et al. 2012). In addition to skin and joint involvement, patients with PsA are also at greater risk for osteoporosis resulting
in further deterioration of bone tissue and a consequent increase in bone fragility and susceptibility to fracture, and inflammatory
bowel disease than the general population (Cashman 2007, Lee, Mendelsohn et al. 2010). There is also evidence that those with PsA
experience a greater burden on their work-lives than the general population and those with psoriasis alone. A German study of 2,009
patients with psoriasis included data on 338 PsA patients. 50% of those with PsA were working vs. 60% of those with psoriasis. Of those
working, significantly more patients in the PsA group had taken time off work during the preceding year (25% vs. 12%) (Radtke, Reich
et al. 2009).
While there are no Irish based studies which examine the burden that psoriatic arthritis places on patients lives, there is no reason
to expect that the impact of the condition differs significantly for the estimated 7,133 people living with psoriatic arthritis in Ireland,
to those who have the condition elsewhere. In short, the evidence presented here makes clear the heavy impact of the disease. More
specifically, the evidence reported here, also clearly suggests that this burden may manifest in the form of diminished quality of life due
to pain or disability or both, and reduce employment opportunities.
Table 11. Estimate prevalence of overweight and obesity in the Irish psoriasis population
3.3.1 Obesity
Perhaps the strongest association between psoriasis and a single cardiovascular risk factor is found with obesity and understanding the
epidemiological relationship between psoriasis and obesity is also important for delineating risk factors for other co-morbid diseases
that may result from obesity. In their 2011 paper entitled: The association between psoriasis and obesity: a systematic review and meta-
analysis of observational studies, Armstrong et al (2012) analysed the results from 16 observational studies with a total of 2.1 million
study participants. In their analysis the authors assert that psoriasis patients have a greater than 50% increase odds of being obese
compared with the general population. The study with the largest patient population (n=610,877) in the 2011 systematic review,
used the GPRD to examine the prevalence of overweight subjects and obesity in a control group and in a group of psoriasis patients
Genetic factors
Environmental factors
Atherosclerosis
- Endothelial dysfunction
- Intima-media thickness
- Arterial stiffness
- Coronary artery calcification
CV disease
- Myocardial infarction
- Stroke
- CV death
(Neimann, Shin et al. 2006). The prevalence rates reported were subsequently adapted to represent the Irish psoriasis population.
The adaptation of these results provide for an estimate of the adult psoriasis population that are either overweight or obese. In
reality, however, the absolute figures of overweight and obesity levels in the Irish psoriasis population are likely to be higher, as based
on the findings from the 2008-10 National Adult Nutrition Survey (NANS), the estimated prevalence of overweight in adults is 37%,
with a further 24% meeting current body mass index (BMI) criteria for obesity (Perry 2012). Applying the incremental differences that
exists between psoriasis patients and controls from Neiman and colleagues (2006), to the Irish prevalence figures from NANS, provides
for a figure of 71% of the adult psoriasis population who may be overweight or obese, in comparison to 61% of the non-psoriasis
population. A number of studies have also demonstrated that there is a positive association between the severity of psoriasis and levels
of obesity. In Langan and colleagues (2012), the authors report that in comparison with controls, those with mild, moderate and severe
psoriasis had their respective odds of being obese increased by 14%, 31% and 66%. While in an Irish study conducted in 2014, the
authors reported that within a population of 103 psoriasis patients, 30% were found to be obese, and that the severity of psoriasis was
significantly associated with BMI and waist circumference (Tobin, Hackett et al. 2014).
Although the exact mechanism underlying the epidemiological association between psoriasis and obesity is uncertain, researchers
have theorized that the chronic inflammation present in adipose tissue may, in fact, exacerbate psoriasis (Armstrong, Harskamp et al.
2012). This hypothesis suggests that it is obesity which is causing psoriasis. However, it is reasonable to suggest that there is a complex
multi-directional process inherent in the relationship between psoriasis and obesity, as some people with psoriasis may be reluctant
to engage in physical activities where their skin disease may be visible to others, leading to an increased risk of being overweight or
obese. Thus, in addition to genetic and immune-mediated mechanisms, behavioural factors may have an additional role in explaining
the relationship that exists between psoriasis and obesity (Armstrong, Harskamp et al. 2012).
Table 12. Excess prevalence of metabolic syndrome in the Irish psoriasis population aged 45-65
Metabolic Syndrome Pso pop by severity Prevalence PrePrevalence in Psoriasis Excess prevalence
45 to 65 in control pop 45 to 64
35
REPORT: The Burden of Psoriasis
risk of stroke
People with more severe forms
of psoriasis have a 43%
increased risk of stroke*
3.5.1 Stroke
In Gelfand et al (2009), the authors aim was to determine the risk of stroke in patients with psoriasis. A population-based cohort study
was conducted of patients seen by general practitioners participating in the GPRD in the UK (n = 644,012). This study found that after
adjusting for major risk factors for stroke (age, sex, diabetes, history of stroke or transient ischemic attack, hyperlipidemia, hypertension,
smoking), both mild (HR 1.06; 95% CI 1.01.1) and severe (HR 1.43; 95% CI 1.1, 1.9) psoriasis were independent risk factors for stroke.
Possibly the most striking result from this analysis, is that those with severe psoriasis have a 43% increased risk of having a stroke.
Converting the reported hazard ratios into estimates of attributable risk, the authors estimate that each year there is approximately one
excess stroke per 4,115 or 530 mild or severe psoriasis patients, respectively. Applying these estimates to the Irish psoriasis population,
we can estimate that each year there may be 18 excess strokes in Ireland attributable to psoriasis (see Table 13).
Excess risk 1 in 4,115 per year 1 in 530 per year 1 in 3,461 per year
36
REPORT: The Burden of Psoriasis
a step further and report that severe psoriasis may be an independent risk factor for CV mortality (HR 1.57; 95% CI 1.26, 1.96) when
adjusting for age, sex, smoking, diabetes, hypertension, and hyperlipidaemia. In their study, those with severe psoriasis experienced
one extra CV death per 283 patients per year, even when adjusting for major CV risk factors. Using the same methodology as in sections
3.5.2 and 3.5.2, we estimate that each year there may be 6 excess CV deaths in Ireland attributable to psoriasis. Furthermore, in Gelfand
and colleagues study (2007), while no overall effect of mild psoriasis on mortality was found, after adjusting for risk factors for mortality,
male and female patients with severe psoriasis died 3.5 (95% CI, 1.2-5.8) and 4.4 (95% CI, 2.2-6.6) years younger, respectively, than
patients without psoriasis.
The significant associations between psoriasis and the vascular events in question, however, are not ubiquitous in the literature.
For example, in Schmitt & Ford (2010), the analysis suggests an association between psoriasis and cardiovascular risk factors, but not
with MI (OR 1.14; 95% 0.811.62) or stroke (OR 0.97; 95% CI 0.611.54). While in Horreau and colleagues (2013), the authors report a
small, but significant increased risk of CVE, but not of CV mortality in people with psoriasis. The controversy continues in this area, and
it is apparent that while studies exist which report that psoriasis is an independent risk factor for CV events such as stroke and MI; it
is important to note that there still remains a debate on the pathogenic mechanisms which links these events with psoriatic disease
(Maybury, Barker et al. 2013).
3.6 Conclusion
Psoriasis affects people in different ways and is often accompanied by a range of co-morbidities. It can present as a mild co-morbidity-
free disease that most people have some experience of either directly or indirectly. However, the occurrence of severe psoriasis is not
uncommon and its manifestation as lesions on the skin may only represent a portion of the health risks and complications present.
This analysis highlights the potentially high number of Irish patients with psoriasis that may also bear the burden of PsA (7,133).
Compounding this is the apparent risk of cardiovascular disease and events such as stroke and myocardial infarction which in some
cases may lead to CV mortality. While there is still some debate regarding how exactly these associations manifest, a growing consensus
within the published literature suggests that there is an increased risk of CV disorders, particularly when psoriasis is severe, possibly due
to shared inflammatory pathways (Boehncke, Boehncke et al. 2011, Khalid, Hansen et al. 2013).
As a consequence of these associated co-morbidities, psoriasis patients are likely to experience diminished QoL and are more likely
to require urgent medical care, hospital admission, and outpatient specialist care than those without these co-morbidities.
38
REPORT: The Burden of Psoriasis
4. Treatment Goals
Current European guidelines define treatment success for moderate to severe psoriasis as achieving a PASI 75 response (that is
achieving a 75% clearance of psoriasis symptoms as per the PASI criteria). This clinical endpoint may, however, be out of date. The
majority of psoriasis patients now achieve PASI 90 responses in randomised trials of the latest-generation biologic agents (Puig 2014).
Figure
Over the2. The
pastincidence
20 years,ofbecause
psoriasisofingenetic
Ireland stratified by age & sextechniques, significant advances have been made with respect to
and immunological
understanding the pathogenesis of psoriasis (Griffiths and Barker 2007). This better understanding has facilitated vast improvements
in the treatments available for psoriasis, with newer medicines providing high levels of skin clearance. This signifies a significant leap
Age
forward in the evolution of medicines available to treat psoriasis, as for the majority of patients, attaining a PASI 90 response had not
been a realistic therapeutic option. For 80example, in a published trial of methotrexate (a drug which was first used to treat psoriasis fifty
years ago (Flytstrm, Stenberg et al. 2008)) after 12 weeks of treatment, only 9.1% of patients had reached a stage where they had
70-79
experienced a 90% reduction in the extent of disease, (as per the PASI 90 criteria) (Saurat, Stingl et al. 2008). The first-generation of
biologic treatments increased this figure60-69 to 21% (Woolacott, Hawkins et al. 2005). As newer, more targeted treatments are developed,
the numbers achieving such high levels of skin clearance have continued to increase. Results from clinical trials for treatments which
50-59
target the Interleukin (IL)-12 and 23 pathways, show more than 50% of people achieving a PASI 90 response or greater after 12 weeks
Male
(Papp, Langley et al.). Results from clinical trials for treatments which target theFemale
40-49 IL-17 pathway, show more than 70% of people achieving
a PASI 90 response (Puig 2014). In addition to this, studies report that the complete visible clearance of psoriasis (as per the PASI criteria)
30-39
is now becoming a realistic therapeutic outcome. A recent study reports that 24.1% of patients achieved PASI 100 (completely clear
skin) after 12 weeks, efficacy which20-29 increased close to 40% after 52 weeks (Puig 2014).
Clinical improvements identified by objective measures such as PASI are, however, only one side of the coin and are especially
0-19
meaningful if they correspond with significant improvements in HRQoL and particularly with achieving a DLQI score of 0 or 1, signifying
no effect of the disease on patients quality of life (Puig 2014). European guidelines also define achieving a DLQI score of 0 or 1 as a
800 600 400 200 200 400 600 800
treatment goal for psoriasis (Torii, Sato et al. 2012). While PASI 75 responses meet the therapeutic expectations of the majority of
patients, PASI responses of Incidence
90 to 100cases
haveofapsoriasis
significantly higher impact on DLQI improvement and are associated with significantly
higher DLQI scores of 0 or 1 (Puig 2014). A number of studies demonstrate the association between clearer skin and significantly larger
gains in HRQoL; a summary of three such studies is outlined below.
Figure 7. Percentage of patients achieving DLQI score of >2 after achieving a PASI 75 repsonse
100
60
40
20
Figure
Source: 8.etPercentage
Schafer al (2014) of patients achieving DLQI score of 0 or 1 among PASI 90 responders 39
90%
20
0
REPORT: The Burden of Psoriasis
DLQI <2 DLQI 2
90%
80%
% Patients achieving a DLQI of 0 or 1
85.7%
70%
60%
50%
40% 50%
30%
20%
10% 20%
0%
< PASI 75 PASI 75-90 PASI 90
In Schafer et al (2010) the authors examine the relationship between PASI and the DLQI. Their results intimate that in many cases,
achieving a PASI-50 or PASI-75 responses was not associated with meaningful improvements in QoL. For example, in the groups PASI-50
and PASI-75, 62.5% and 42.3% of the patients, respectively, did not attain an improvement of their DLQI score of at least 5 score points.
According to European guidelines the failure to reach this endpoint is an indication of treatment failure and thus criteria for therapy
change (Mrowietz, Kragballe et al. 2011). It was also the case, as illustrated by Figure 7, that 65.4% of people who achieved a PASI 75
response did not attain sufficient improvements in DLQI scores to the effect that the disease had no longer any effect on their QoL.
In Takeshita et al (2014), the authors undertook a study to determine if physician-reported differences in patients with clear versus
almost clear skin (as defined by PGA) are associated with significant differences in patient-reported HRQoL as measured by the DLQI in
the routine clinical practice setting. The study reported significantly different DLQI scores of patients with clear versus almost clear skin.
The median DLQI score for patients with clear skin was 0 corresponding to their psoriasis having no effect on their QoL, whereas patients
with almost clear skin the median score was 2, corresponding to having a small effect on QoL. Similarly, a higher proportion of patients
with clear (76.3%) versus almost clear (44.2%) skin had DLQI scores less than or equal to 1, corresponding to having no effect on QoL.
Similarly, in Torii et al (2012), the authors analysed the relationship between the baseline PASI score and DLQI in the analysis set of
114 patients, with the results demonstrating a positive correlation. There was no statistical significance in the difference in baseline
PASI score and DLQI between the PASI 90 responders and PASI 7590 responders. In the relationship of the percent improvement in
PASI and DLQI at the complete assessment, there was a negative correlation between these two variables, the DLQI score decreased
progressively with the increasing percent improvement in PASI. The percentage of patients achieving a DLQI of 0 or 1 among PASI 90
responders was significantly higher compared to the PASI 7590 responders (see Figure 8).
From the above analysis, it is apparent that not only does achieving a PASI 90 response significantly improve the visible symptoms
of psoriasis, it also goes above and beyond the QoL gains achievable from attaining lower clinical responses. For example, moving
from PASI-75 to PASI-90 represents a 15% clinical improvement; however, as illustrated by Figure 8, this 15% clinical improvement was
associated with a 35.7% increase in patients reporting that psoriasis had no longer an effect on their QoL.
4.1 Conclusion
Achieving a PASI 75-90 response has been accepted as a reasonable therapeutic goal for the treatment of psoriasis. Achieving this clinical
endpoint is associated with improving the quality of life of those with the condition and also daily, social and productive functioning
(Shikiar, Willian et al. 2006, Revicki, Willian et al. 2008). However, there are still significant gains to be made. Newer therapies are now
potentially able to achieve PASI-90 in the majority of patients and wedded with the clear links between PASI-90 and improved HRQoL,
it may now be pragmatic to revaluate the therapeutic gold standard for people who are treating or are being treated for psoriasis.
40
REPORT: The Burden of Psoriasis
5. Conclusion
The paucity of Irish specific data in this particular medical space, has consequently led to policymakers and other stakeholders in
Ireland requiring better information to address the problems associated with the disease. This report aims to address this imbalance. To
this end, evidence is required on the extent of psoriasis and its impact in the Irish setting. Hence, the goals of this report can be framed
as follows:
The new estimates generated in this study indicate that psoriasis affects a large number of people in Ireland. In terms of prevalence,
the estimate reported here provides for a figure of 73,205 people living in Ireland with psoriasis. The incidence of the disease is
estimated as being 13.5 per 10,000 person years. Within the psoriasis population an estimated 12.4% suffer with severe levels of disease.
Furthermore, these numbers are likely to increase in the coming years as an upward trend has been identified in the prevalence and
incidence of the disease internationally (Icen, Crowson et al. 2009). Large population based epidemiological studies which might
include registries are the gold-standard for estimating the prevalence and incidence of a particular disease. However, in the absence of
such, this research fills a gap in the information base, and due to the close genetic and socio-cultural links between Ireland and the UK,
the results reported here should offer a good guide to the burden of psoriasis in Ireland.
Psoriasis is not just a skin disease. Evidence suggests that psoriasis places a significant burden on HRQoL and on the mental health
of those who have the condition. It seems that this burden manifests due to the physical factors associated with the disease and on the
location and the visibility of the lesions, causing self-consciousness, embarrassment and stigmatisation which can ultimately lead to
depression and in some cases suicidal ideation (Schmitt and Ford 2007).
Psoriasis also impacts on the work-lives of those who have the condition with reports of absenteeism, presenteeism, work place
discrimination and restriction of career choice all being associated with the psoriasis (Armstrong, Schupp et al. 2012). These effects are
likely to have important economic implications for the individual affected, their families, and the society as a whole.
Psoriasis affects people in different ways and is often accompanied by a range of co-morbidities. For the majority, psoriasis presents
as a mild co-morbidity-free disease. However, occurrences of severe psoriasis are not uncommon and its manifestation as lesions on
the skin may only represent a portion of the health risks and complications present. In particular, this analysis highlights the potentially
high number of Irish patients (7,133) with psoriasis that may also bear the burden of PsA.
Compounding this is the apparent risk of cardiovascular disease and events such as stroke and myocardial infarction. While there is
still some debate regarding how exactly these associations manifest, a growing consensus within the published literature suggests that
there is an increased risk of CV disorders, in particular, in individuals with severe psoriasis, probably due, in part, to shared inflammatory
pathways (Boehncke, Boehncke et al. 2011, Khalid, Hansen et al. 2013).
As a consequence of these associated co-morbidities, people with psoriasis are likely to experience diminished QoL and are more
likely to require urgent medical care, hospital admission, and outpatient specialist care than those without these co-morbidities.
Achieving a PASI 75-90 response has been accepted as a reasonable therapeutic goal for the treatment of psoriasis (Puig 2014).
Achieving this clinical endpoint is associated with improving the quality of life of those with the condition and also daily, social and
productive functioning (Shikiar, Willian et al. 2006, Revicki, Willian et al. 2008). However, there are still significant gains to be made.
Newer therapies are now potentially able to achieve PASI-90 in the majority of patients and wedded with the clear links between PASI-
90 and improved HRQoL, it may now be pragmatic to revaluate the therapeutic gold standard for people who are treating or are being
treated for psoriasis.
6. Appendix
Table 16. Prevalence Estimate Adjusted for Ethnicity
Asian/Asian British 7.5% 4,738,650 0.47% (Ding, Wang et al, 2012) 22,271
Black/African/Caribbean/Black British 3.3% 2,085,006 1.30% (Gelfand, Stern et al. 2005) 27,105
9. This calculation is based on an average of the prevalence estimates reported in two studies mentioned above (Ding, Wang et al, 2012, Gelfand, Stern et al. 2005)
Country Study Design Study population Costs due to psoriasis per patient
United States Project report (evaluated the data Mild, moderate and Direct cost: $1,244
from National Surveys) severe psoriasis Indirect cost due to productivity losses: $144
Intangible cost because of QoL impact: $2,300
Canada Questionnaire based survey Moderate to severe Lost mean patient wages due to absence from
work = 2,2270.84 Canadian dollars/person/year
Spain Longitudinal observational study Mild, moderate and Direct costs per patient: 890.50
severe Indirect cost due to productivity losses: 188.5
Italy Cost of illness analysis Moderate to severe Direct cost per patient: 5,690
plaque psoriasis Indirect cost due to productivity losses: 2,682
43
REPORT: The Burden of Psoriasis
44
REPORT: The Burden of Psoriasis
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REPORT: The Burden of Psoriasis
Glossary
AR Attributable Risk MI Myocardial Infarction
BMI Body Mass Index NANS National Adult Nutrition Survey
BSA Body Surface Area PASI Psoriasis Area and Severity Index
CV Cardiovascular PGA Physicians Global Assessment
DLQI Dermatology Life Quality Index PsA Psoriatic Arthritis
GPRD General Practice Research Database THIN The Health Improvement Network
HRQoL Health Related Quality of Life
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IE02/SCK14-CNF012d Date of preparation: April 2015