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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. Warren 10 1 Department of Dermatology, University of Southern California, Los Angeles, CA; 2 Richford Gate Medical Practice, London, UK; 3 Department of Internal Medicine Specialties, Division of Dermatology and Venerology, Geneva University Hospitals, and Department of Pathology and Immunology, University of Geneva, Geneva, Switzerland; 4 Department of Dermatology, Apollo Hospitals, Chennai, India; 5 Department of Dermatology, Westmead Hospital, The University of Sydney, Westmead, Australia; 6 Department of Dermatology, Hospital das Clínicas University of São Paulo, São Paulo, Brazil; 7 Whipps Cross University Hospital and the Royal London Hospital, London, UK; 8 Novartis Pharma AG, Basel, Switzerland; 9 GfK, Basel, Switzerland; 10 The Dermatology 1

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Page 1: file · Web viewPatient 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

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

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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

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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

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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.

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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.

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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-

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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

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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;

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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

9

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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

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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.

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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,

12

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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.

13

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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

14

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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.

15

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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

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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.

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Figure 2. Treatments currently used by respondents who did and did not report

achieving clear/almost clear skin. Multiple responses were possible.

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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.

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Figure 4. Among all respondents (N=8338), 84% have experienced discrimination or

humiliation.

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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).

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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).

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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

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Supplementary Table 2. Clear About Psoriasis Survey participating psoriasis patient organizations

Area Patient OrganizationArgentina 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

30