Patient Perceptions of Clear/Almost Clear Skin in Moderate-to-Severe Plaque Psoriasis: Results of the Clear About Psoriasis Worldwide Survey
A. Armstrong,1 S. Jarvis,2 W.-H. Boehncke,3 M. Rajagopalan,4 P. Fernández-Peñas,5 R.
Romiti,6 A. Bewley,7 B. Vaid,8 L. Huneault,8 T. Fox,8 M. Sodha,9 R. B. Warren10
1Department of Dermatology, University of Southern California, Los Angeles, CA;
2Richford Gate Medical Practice, London, UK; 3Department of Internal Medicine
Specialties, Division of Dermatology and Venerology, Geneva University Hospitals, and Department of Pathology and Immunology, University of Geneva, Geneva, Switzerland;
4Department of Dermatology, Apollo Hospitals, Chennai, India; 5Department of Dermatology, Westmead Hospital, The University of Sydney, Westmead, Australia;
6Department of Dermatology, Hospital das Clínicas University of São Paulo, São Paulo, Brazil; 7Whipps Cross University Hospital and the Royal London Hospital, London, UK;
8Novartis Pharma AG, Basel, Switzerland; 9GfK, Basel, Switzerland; 10The Dermatology Centre, Salford Royal NHS Foundation Trust, NIHR Manchester Biomedical Research Centre, The University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
Corresponding Author Richard Warren
The Dermatology Centre The University of Manchester
Salford Royal Foundation Hospital Salford, Manchester, M6 8HD United Kingdom
Tel: +44 (0)161 2064344 Fax: +44 (0)161 2061095
Email: [email protected]
Disclosure: Dr Armstrong has served as an investigator, advisor, and/or speaker for AbbVie, Amgen, Eli Lilly, Janssen, Merck, Modernizing Medicine, Novartis, Pfizer, Regeneron, Sanofi, Science 37 and Valeant. Dr Jarvis has served as a speaker or advisory board member for AstraZeneca, Bristol Myers Squibb, Novartis, Pfizer, Sanofi, Servier, Shire, and Takeda. Dr Boehncke has served as advisor and/or speaker for AbbVie, Almirall, Amgen, Biogen, Bristol-Myers Squibb, Celgene, Eli Lilly, Janssen, Leo Pharma, MSD, Novartis, Pantec, Pfizer, Sanofi, and UCB. Dr Rajagopalan has been a consultant for MSD and Schering Plough and an advisory board member and
honorarium recipient from Pfizer (Wyeth). Dr Fernández-Peñas has served on advisory committees for AbbVie, Celgene, Eli Lilly, Janssen, Leo Pharma, Merck-Serono,
Novartis, Roche, and Sun Pharma. Dr Romiti has been a consultant, advisory board, or speakers’ bureau member for AbbVie, Eli Lilly, Janssen-Cilag, Leo Pharma, MSD, Novartis, Pfizer, and UCB. Dr Bewley has received consultancy payments from AbbVie, Almirall, Galderma, Janssen, Leo Pharma, Novartis, and Thornton and Ross. Mr Vaid was an employee of Novartis at the time this survey was conducted. Ms Huneault and Dr Fox are employees of Novartis. Ms Sodha was an employee of GfK Switzerland at
the time this survey was conducted. Dr Warren has received grant/research support from AbbVie, Novartis, and Pfizer; has served as a consultant for AbbVie, Almirall, Amgen, Boehringer Ingelheim, Celgene, Eli Lilly, Janssen, Novartis, Pfizer, and Xenoport; and is a speakers’ bureau member for AbbVie, Amgen, Celgene, Eli Lilly, Janssen, Novartis, and Pfizer.
Funding: Novartis Pharma AG, Basel, Switzerland, supported this study.
Running head: Patient attitudes on skin clearance in psoriasis
Manuscript word count: 2838
Number of tables: 1 (+2 supplementary tables) Number of figures: 6
Abstract
Background: Therapeutic advances have made the achievement of clear/almost clear skin possible for many patients with moderate-to-severe plaque psoriasis.
Objective: To determine patient perceptions of the impact of psoriasis and of attaining clear/almost clear skin.
Methods: Global survey of patients with moderate-to-severe psoriasis.
Results: 8338 patients from 31 countries participated. The majority (57%) had not achieved self-assessed clear/almost clear skin with their current therapy, and 56% of those who had not met this goal believed it would be impossible to do so. Among the
patients who had clear/almost clear skin, 73% had not initiated their current treatment until >1 year after psoriasis diagnosis, and 28% had to wait >5 years. Eighty-four percent of all respondents experienced discrimination and/or humiliation due to psoriasis, and many reported negative effects on work, intimate relationships, sleep, and mental health. Patients without clear/almost clear skin reported that such
achievement would open new possibilities, like swimming (58%), a wider choice of clothing (40%), and meeting new people (26%). A limitation of this study, as with any survey-based research, is that selection and recall bias may have been present.
Additionally, respondent definitions of clear/almost clear skin were subjective and may have varied.
Conclusion: Despite the importance of clear/almost clear skin to psoriasis patients, most are still not achieving it, and many are unaware it is possible.
Introduction
Psoriasis, particularly in its more severe forms, imposes a heavy burden on patients. In addition to the effects of skin lesions on appearance, symptoms such as pain and itch are bothersome and interfere with daily activities.1,2 Lesions at certain locations, such as the palms or soles, can be especially disabling.3 Psoriasis and its associated
stigmatization exert harmful effects on multiple dimensions of health-related quality of life (QoL), including relationships, work productivity, ability to sleep, and mental health.4,5 Psoriasis patients are at substantially increased risk of depression, anxiety, and
suicidality.6,7 Depression contributes to the increased mortality in psoriasis patients, which underscores its devastating psychosocial impact.8 Psoriasis treatments have the potential to address many aspects of the disease.
Psoriasis therapies are assessed foremost by their efficacy in ameliorating skin lesions.
Clinical management guidelines, including European consensus treatment goals, define efficacy as ≥50% improvement from baseline in the Psoriasis Area and Severity Index (PASI 50 response).9,10 Patients in whom response fails to meet this threshold require modifications to their treatment. In recent years, an increasing array of options have become available for psoriasis patients in need of systemic agents, including biologic (inhibitors of tumor necrosis factor, interleukin [IL]-12/23, IL-17, or the IL-23 p19 subunit) and small-molecule (oral phosphodiesterase-4 inhibitor) therapies. For patients with access to the newer treatments, the expanded armamentarium, which now includes agents other than traditional systemic drugs (e.g., methotrexate, acitretin, cyslosporine A, and fumaric acid esters), provides more opportunities for achieving satisfaction with the efficacy of their regimens.
Given the advances in psoriasis treatment, higher response levels than PASI 50 are a realistic aspiration for efficacy in each patient; ≥90% PASI improvement (PASI 90 response) or a low absolute PASI (for example, less than 2 or 3) have been proposed as feasible expectations.11,12 Although PASI 90 is determined relative to baseline psoriasis severity, and therefore will appear differently between individuals, a PASI 90 response provides a level of improvement that will correspond to clear or almost clear skin as perceived by the patient.13
Psoriasis sufferers are often dissatisfied with their treatments but may accept inadequate efficacy because they do not know that clear or almost clear skin is attainable.14 Little is known regarding patients’ perception of the efficacy of psoriasis therapies and whether clearance would be possible. We conducted a worldwide survey of 8338 patients with moderate-to-severe plaque psoriasis from 31 countries to assess awareness of clear/almost clear skin as a treatment goal, actual achievement of self- reported clear/almost clear skin in clinical practice, and the impact of clear/almost clear skin on patient lives.
Materials and Methods Survey design
This survey was developed in collaboration with a steering committee of medical experts that included dermatologists, general practitioners, and representatives of psoriasis patient advocacy organizations (the US National Psoriasis Foundation and European EUROPSO). The steering committee advised on the selection of patient-
reported outcome assessment tools to be used in the survey. The assessment instruments selected had all been previously validated and were used to capture the impact of clear/almost clear skin on multiple dimensions of patient life:
Self-Administered Psoriasis Area and Severity Index (PASI): A composite
evaluation instrument to assess psoriasis severity, with subscores for erythema, induration, scaling, and body surface affected (total score range of 0 to 72, with higher scores indicating more severe disease).15
Stanford Presenteeism Scale (version SPS-6): Consists of 6 questions that capture patient-perceived effects of disease on work productivity, with each item rated on a scale of 1 to 5.16
Medical Outcomes Study Sleep Scale: Measures sleep dimensions such as initiation, quantity, maintenance, and somnolence.17
World Health Organization Well-Being Index: A 5-item questionnaire for the assessment of psychological well-being.18
The survey, which could be conducted online or in face-to-face interviews, consisted largely of multiple-choice questions and could be completed in approximately 20
minutes. To collect data on psoriasis patients worldwide, the instrument was translated into 32 languages for use in 31 countries. Psoriasis patient advocacy organizations reviewed the survey to ensure ease of use and understanding.
Patient sample
Participants were recruited from 31 countries via 25 psoriasis patient organizations and the market research company GfK (Nuremberg, Germany) and screened for eligibility
(see Supplementary Appendix for countries/patient organizations). Patient advocacy organizations distributed the survey hyperlink via different channels, including Twitter, Facebook, and online/offline newsletters.
Inclusion criteria
Participants had to be ≥18 years old and currently have plaque psoriasis that was diagnosed by a general practitioner, dermatologist, rheumatologist, allergist, or other medical professional. Moderate-to-severe psoriasis was defined using self-assessed PASI. For this survey, moderate-to-severe psoriasis was defined as either: 1) PASI ≥10, which is a standard definition of moderate-to-severe psoriasis;19 or 2) PASI >5 to <10 with psoriasis affecting sensitive and/or prominent body parts: face, palms, hands, fingers, genitals, soles of feet, or nails. The second definition was introduced following endorsement by expert dermatologists on the survey steering committee and after approximately 40% enrollment. The second definition accounts for the potentially debilitating impact of psoriasis located on certain body parts.
Ethical conduct of the survey
Patient informed consent was obtained at the beginning of the survey. As this was a non-interventional study that invited members of the public to participate, this study is exempt from institutional review board approval.
Results
Survey conduct and sample
The study period for completion of the Clear About Psoriasis survey was from October 2015 to March 2016. Patients were recruited from 31 countries in Asia, Australia,
Europe, North America, and South America. A total of 398,230 patients were recruited;
these individuals were directed to the landing page of the survey website.
Approximately 154,000 began actively filling out the survey and were screened for eligibility during the first 19 questions. Of the screened population, 8338 met the eligibility criteria and participated in the survey. Most of the patients screened were ineligible because they did not have plaque psoriasis or did not meet the self-assessed PASI criteria. Participant demographic and clinical characteristics are shown in Table 1.
Findings
When participants were asked for a subjective impression of whether their current psoriasis treatment provides clear or almost clear skin, 57% (n=4733) answered that they had not reached this goal with current therapy, and 43% (n=3605) replied that they had. Participants were also asked if they were satisfied with their current psoriasis therapy: 56% were satisfied, 24% were uncertain, and 20% were dissatisfied (Fig. 1). A correlation was evident between treatment satisfaction and having clear/almost clear skin: respondents who were satisfied with their current therapy were more likely to have clear/almost clear skin, whereas respondents dissatisfied with treatment were
disproportionately more likely to have not achieved clear/almost clear skin. In a comparison of medication use between patients with and without self-reported
clear/almost clear skin, higher proportions of patients with clear/almost clear skin were using oral systemics or injectable biologics, whereas a higher proportion of patients without clear/almost clear skin reported using prescription or nonprescription topical therapies (Fig. 2).
Most respondents without self-reported clear/almost clear skin were not aware that this is a realistic treatment goal: 56% disagreed with the statement that it would be possible to achieve clear/almost clear skin in the future. Similarly, respondents who had already achieved self-reported clear/almost clear skin with their current treatment were asked to report retrospectively whether they had believed that this treatment goal was attainable, prior to actually achieving it. Fifty-three percent had not believed that clear/almost clear skin was possible before actually experiencing it.
Among patients who had self-reported clear/almost clear skin, nearly three quarters started their current, efficacious therapy >1 year after diagnosis, and 28% were
prescribed their current therapy >5 years after diagnosis (Fig. 3). On average, patients had required 4 different treatments and needed to see 3 different medical professionals before achieving clear/almost clear skin.
A large majority of participants (84%) reported experiences of discrimination and/or humiliation in daily life, which highlights the importance of effective symptom control (Fig. 4). The minority (16%) who did not report negative experiences had less psoriasis involvement (PASI >5 to <10 vs. PASI ≥10) and were more likely to be male, older, and to have achieved clear/almost clear skin. Although not a form of social discrimination, the additional burden of housework resulting from flaking skin was cited by many respondents (37%) as a negative impact of psoriasis on daily life.
Feelings of isolation and shame were common. Many respondents agreed with the statements “I feel self-conscious about my skin” (51%), psoriasis “makes me feel unattractive” (44%), “I feel ashamed about my skin” (40%), and psoriasis “makes me feel less confident about myself” (39%).
Psoriasis exerted a negative impact on work performance. Among the employed
respondents (n=5537), 42% needed ≥1 day off from work in the previous 6 months due to psoriasis, and 16% needed ≥10 days off (Fig. 5a). Among patients who took ≥1 day off over 6 months, the mean number of days taken was 10.1. Fifty-four percent
(n=4505) of all respondents believed that psoriasis had impacted their professional lives (Fig. 5b). In this subgroup, 38% stated that they lost productivity due to psoriasis-
related itching, 30% were not fully productive due to pain, and 11% had to quit a job due to psoriasis. Forty-two percent of all respondents indicated that itch reduction was an important treatment goal for them.
Forty-three percent of all participants believed that psoriasis had affected past or current relationships. One out of 2 participants agreed with the statement “I avoid having
sex/intimate relationships with people because of my psoriasis.” Large proportions also agreed with the statements “I can’t stand the thought of someone seeing my skin”
(40%), “I feel inadequate as a spouse or partner” (33%), “I can’t stand the thought of someone touching my skin” (27%), “I avoid dating because I am ashamed of my psoriasis” (26%).
Nearly one-third (32%) of respondents reported that their disease made them
depressed. Participants voiced feelings of despair and loneliness and acknowledged suicidal thoughts. Although participants were not asked directly about suicidal ideation, a review of the open-ended responses from English-speaking participants found that it was reported by 11 respondents. The true number of respondents who had experienced suicidal thoughts is likely to have been higher. In addition to effects on mood, a large
proportion of all respondents (61%) reported psoriasis-related insomnia, and 26% slept only 3–5 hours per night.
Subjects who had not achieved clear/almost clear skin believed that doing so would improve their ability to participate in a range of life activities (Fig. 6).
Discussion
While patient perceptions of and attitudes about psoriasis and its treatment are considered increasingly paramount in managing the disease, few studies have systematically elicited patients’ perspectives on a large scale.20-25 The study reported here took an innovative approach of evaluating broad aspects of patient experience, encompassing questions on symptom severity, treatment efficacy, and the impact of psoriasis on aspects of health-related QoL, such as sleep, work productivity, and relationships. The survey extended globally, recruiting 8338 participants from 31 countries.
A key finding is that the majority (57%) of patients with extensive disease have still not achieved self-reported clear or almost clear skin. Among respondents who had not achieved clear/almost clear skin with their current treatment, most (53–56%) were not even aware that this is a realistic aspiration.
Among patients who considered themselves clear/almost clear, 28% had not started an effective psoriasis treatment until >5 years after diagnosis. This statistic underscores the variability in psoriasis care delivery among healthcare providers and potential
knowledge or access gaps that need to be addressed. The difficulty that patients reported in finding effective therapy is consistent with recent data on the suboptimal
treatment of psoriasis. Studies have indicated that 20%–32% of patients with moderate- to-severe psoriasis are not receiving any therapy,26,27 and undertreatment is common, with substantial proportions of moderate (19%–30%) and severe (22%–33%) psoriasis patients receiving topical treatments only.14,27
High proportions of survey respondents indicated that their disease resulted in discrimination or humiliation in daily life and negative consequences for work and personal relationships. Such experiences were associated with feelings of shame and isolation. Negative feelings and experiences would be expected to carry an elevated mental health risk; indeed, nearly one-third of respondents reported that their psoriasis made them depressed.
Among respondents overall, 56% reported satisfaction with their current treatment.
Earlier surveys found the rate of treatment satisfaction (i.e., proportion of respondents who were “very satisfied”) to be <50%.20,21 Although comparisons across different surveys should be made with caution, these data suggest that recent advances in psoriasis therapeutics may be improving patient impressions of treatment.
Some (17%) respondents who reported clear/almost clear skin were still not satisfied with treatment. Inadequate understanding of the high level of improvement required for clinically defined clear/almost clear skin, risk of relapse, and persistent anxiety and/or depression seem likely reasons for this result. The continued dissatisfaction may also point to a role for cumulative life course impairment (CLCI) in establishing enduringly negative feelings. CLCI in psoriasis refers to the permanently life-altering effects of psoriasis and its stigmatization in limiting opportunities and closing off aspirations of an educational, professional, or personal nature.28,29 Barriers to effective systemic psoriasis
therapy are well-documented.30 Earlier and more effective treatment of psoriasis may have long-lasting benefits throughout patient lives.
Although half of the respondents stated that they avoided sex/intimate relationships because of their psoriasis, 71% reported being married or in a relationship, a proportion that was largely consistent across all geographic regions of the survey (data not
shown). The percentage of respondents who were partnered, although seemingly high, was similar to that reported for psoriasis patients in the US National Health and Nutrition Examination Survey (69%) and a study conducted in Spain and Portugal (66%).31,32 The questions on intimacy in this survey captured respondent perceptions on how the
disease affected their relationships, perceptions that may not necessarily align with actual relationship status.
The loss of work time and productivity reported by psoriasis sufferers was substantial.
Respondents who needed time off from work due to psoriasis reported taking an average of 10 sick days in the previous 6 months. Based on the mean hourly US wage of $23.23 (2015 dollars), this time away would translate into a yearly cost of sick leave
>$3700 per person.33 Another finding was the disruptive effect of itch on work
productivity and the desire for treatment to address this symptom. Symptoms such as itch may also contribute to sleep impairment in psoriasis patients. Loss of sleep, in turn, likely exacerbates problems with daily function in a vicious cycle.
Patients who had not yet achieved clear/almost clear skin felt that it would make possible their participation in a range of daily activities. The importance of clear/almost clear skin for psoriasis sufferers demonstrates the critical value of sustained therapeutic efficacy for QoL.
A limitation of this survey was that treatment efficacy was self-reported, and patient understanding of clear/almost clear skin may not be aligned with the high degree of improvement required for a clinical definition of this level of response, i.e., PASI 90. The 43% of respondents who reported achievement of clear/almost clear skin in this survey therefore may not have been considered clear/almost clear by dermatologists. Nor is there at present a consensus clinical definition of clear/almost clear skin. A score of 0 or 1 on the various physician’s global assessment instruments for psoriasis severity is often taken to mean clear/almost clear skin, yet many patients who are assigned these scores do not meet PASI 90 criteria.34 Given that a PASI 90 response to treatment is associated with substantially greater improvement in disease-related QoL than lesser levels of PASI response,13 this survey may have failed to capture the full implications of clinically defined clear/almost clear skin for patient lives.
Survey eligibility criteria included a diagnosis of psoriasis by a medical professional, but diagnostic practices may have differed substantially by geographic region and/or
medical specialty. In particular, the accurate diagnosis of the group of patients with limited extent disease was likely to have been difficult for non-specialists, potentially leading to the inadvertent inclusion of respondents with non-psoriasis conditions, such as chronic hand eczema or fungal infection. As with all surveys, other limitations include the potential for selection bias, recall bias, and ambiguity/misinterpretation of the
questions. In particular, for the question on how long after diagnosis it took to start effective therapy, the possible answers were not mutually exclusive (<1 year, >1 year,
>2 years, >5 years). Respondents who required >5 years to initiate effective therapy
may have selected one of three different answers, thereby potentially yielding an underestimate of the true amount of time.
The survey nonetheless provides robust findings on the importance of attaining clear/almost clear skin in psoriasis and the persistence of inadequate treatment, even with the availability of multiple therapeutic options. PASI 90 appears to be an
increasingly realistic expectation,but self-reported achievement of clear/almost clear skin in real-world settings occurs in only a minority of patients, in a context in which the undertreatment of psoriasis is still common. Sustained achievement of high skin
clearance has the potential to improve severe QoL deficits in psoriasis and open a wider horizon of life experiences to patients.
Acknowledgements: The authors would like to thank Emily Boyd of the National Psoriasis Foundation and Ottfrid Hillmann of EUROPSO for their contributions to developing and implementing the survey. Novartis Pharma AG (Basel, Switzerland) supported this study. Andrew Horgan, PhD, of BioScience Communications, New York, NY, provided writing and editorial assistance supported by Novartis.
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Table 1. Demographics and clinical characteristics of survey respondents (N=8338)
Gender, female 55%
Mean age in years 43 (females)
45 (males) Occupational status
Employed 67%
Retired 13%
Homemaker 7%
Unemployed 7%
Student 4%
Other 3%
Family status
Married 55%
Single 25%
In a relationship 16%
Other 4%
Mean PASI 14.3
PASI ≥10 68%
PASI >5 to <10 32%
Psoriatic arthritis* 51%
*Self-reported and not a medically confirmed diagnosis
Figure 1. Satisfaction with current psoriasis treatment in the overall sample (N=8338) and prevalence of self-reported clear/almost clear skin in the subgroups satisfied or dissatisfied with current treatment. Satisfied respondents (n=4670): 1662 not
clear/almost clear and 3008 clear/almost clear. Uncertain respondents (n=2009; not shown): 1593 not clear/almost clear and 416 clear/almost clear. Dissatisfied
respondents (n=1659): 1478 not clear/almost clear and 181 clear/almost clear.
Figure 2. Treatments currently used by respondents who did and did not report achieving clear/almost clear skin. Multiple responses were possible.
Figure 3. Length of time needed to be prescribed efficacious treatment in respondents who achieved clear or almost clear skin (n=3605). Percentages for length of time add up to >100% due to rounding.
Figure 4. Among all respondents (N=8338), 84% have experienced discrimination or humiliation.
Figure 5. Employed patients (n=5537) who needed time off from work in the past 6 months due to psoriasis (a) and proportion of all patients (N=8338) who felt that psoriasis had affected their professional life (b).
Figure 6. Activities patients would look forward to when they achieved clear/almost clear skin (patients without clear/almost clear skin on current treatment; n=4733).
Supplementary Appendix
Supplementary Table 1. Clear About Psoriasis Survey countries with numbers of enrolled participants
Argentina 71 Italy 639
Australia 303 Japan 204
Austria 136 Mexico 143
Belgium 133 Netherlands 302
Brazil 426 Norway 221
Bulgaria 80 Portugal 277
Canada 348 Romania 155
Czech Republic 103 Russia 202
Denmark 91 South Korea 30
Finland 227 Sweden 70
France 616 Switzerland 176
Germany 454 Taiwan 84
Hungary 140 Turkey 381
India 215 United Kingdom 552
Ireland 65 United States 1415
Israel 79
Supplementary Table 2. Clear About Psoriasis Survey participating psoriasis patient organizations
Area Patient Organization
Argentina AEPSO
Austria PsO Austria
Belgium Psoriasis Liga Vlaanderen / GIPSO / Psoriasis-Contact
Brazil Psoríase Brasil
Canada Canada Psoriasis Network Denmark Psoriasisforeningen
Europe EUROPSO
Finland Finnish Psoriasis Association
France France Psoriasis
Hungary Hungarian Psoriatic Patient Clubs’ Association / Szeged Psoriasis Association
Ireland Irish Skin Foundation
Israel Israeli Psoriasis Association
Mexico Asociación Mexicana Contra la Psoriasis
Netherlands Psoriasis Federatie Nederland / Psoriasis Vereniging Nederland Norway Psoriasis - og eksemforbundet
Portugal PSO Portugal
Romania APAA
Switzerland Swiss Psoriasis and Vitiligo Association Taiwan Psoriasis Association Taiwan
Turkey Turkish Psoriasis Patient Association United States National Psoriasis Foundation
