Patient perspectives in the management of psoriasis: results from the population-based Multinational Assessment of Psoriasis and Psoriatic Arthritis Survey.

Patient perspectives in the management of psoriasis: Results from the population-based Multinational Assessment of Psoriasis and Psoriatic Arthritis Survey Mark G. Lebwohl, MD,a Herve Bachelez, MD, PhD,b Jonathan Barker, MD, FRCP, FRCPath,c Giampiero Girolomoni, MD,d Arthur Kavanaugh, MD,e Richard G. Langley, MD, FRCPC, FACP,f Carle F. Paul, MD, PhD,g Lluıs Puig, MD, PhD,h Kristian Reich, MD,i and Peter C. M. van de Kerkhof, MD, PhDj New York, New York; Paris and Toulouse, France; London, United Kingdom; Verona, Italy; La Jolla, California; Halifax, Nova Scotia, Canada; Barcelona, Spain; Hamburg, Germany; and Nijmegen, The Netherlands Background: Available psoriasis surveys offer valuable information about psoriasis and psoriatic arthritis (PsA), but are limited by methodology or enrollment requirements. Objective: To further the understanding of the unmet needs of psoriasis and PsA patients. Methods: This was a large, multinational, population-based survey of psoriasis and/or PsA patients in North America and Europe. Patients were selected by list-assisted random digit dialing and did not have to currently be under the care of a health care provider, a patient organization member, or receiving treatment; 139,948 households were screened and 3426 patients completed the survey. From The Icahn School of Medicine at Mount Sinai,a New York; Sorbonne Paris Cite Univ Paris Diderot, Department of Dermatology,b APHP Saint-Louis Hospital, Paris, France; St John’s Institute of Dermatology, Division of Genetics and Molecular Medicine,c King’s College, London; University of Veronad; University of California, San Diego School of Medicine,e La Jolla; Dalhousie University,f Halifax; Department of Dermatology,g Toulouse University and Larrey Hospital, Toulouse; Hospital de la Santa Creu i Sant Pau,h Barcelona; Sclderm Research Institute and Dermatologikum Hamburgi; and Radboud University Nijmegen Medical Centre,j Nijmegen. Survey sponsored by Celgene Corporation. The authors received editorial support in the preparation of the manuscript from Peloton Advantage, LLC, and Jennifer Schwinn, RPh, funded by Celgene Corporation. Dr Lebwohl has served as an investigator for Amgen, Celgene Corporation, Coronado Biosciences, Eli Lilly and Company, Janssen Biotech, Inc, LEO Pharma, GlaxoSmithKline, and Ranbaxy Inc, and as a consultant for Abbott Laboratories, Amgen, Anacor Pharmaceuticals, Inc, BioLineRx, Ltd, Celgene Corporation, DermiPsor Ltd, Eli Lilly and Company, Galderma, Janssen Biotech, Inc, LEO Pharma, Maruho Co, Ltd, Meda Pharmaceuticals, Novartis Pharmaceuticals Corporation, Pfizer Inc, and Valeant Pharmaceuticals. Dr Bachelez has served on the advisory board of and as a consultant and speaker for AbbVie Pharmaceuticals, Amgen, Celgene Corporation, Eli Lilly and Company, Janssen Pharmaceuticals, LEO Pharma, Novartis Pharmaceuticals Corporation, and Pfizer Inc, and on the advisory board of Boehringer Ingelheim. Dr Barker has no conflicts of interest to declare. Dr Girolomoni has served as an investigator for Celgene Corporation, MSD, Novartis Pharmaceuticals Corporation, and Pfizer Inc; on the advisory board of Almirall and Otsuka Pharmaceutical Co, Ltd; and on the advisory board of and as a speaker for AbbVie Pharmaceuticals, Janssen Pharmaceuticals, LEO Pharma, MSD, Novartis Pharmaceuticals Corporation, and Pfizer Inc. Dr Kavanaugh has served as an investigator for AbbVie Pharmaceuticals, Amgen, Bristol-Myers Squibb, Celgene Corporation, Janssen Pharmaceuticals, and

UCB, Inc. Dr Langley has served on the advisory board of and as an investigator and speaker for AbbVie Pharmaceuticals, Amgen, Celgene Corporation, Centocor, Pfizer Inc, Novartis Pharmaceuticals, and LEO Pharma. Dr Paul has served as a consultant for AbbVie Pharmaceuticals, Amgen, Celgene Corporation, Eli Lilly and Company, Janssen Pharmaceuticals, LEO Pharma, Novartis Pharmaceuticals Corporation, Pfizer Inc, and Pierre Fabre. Dr Puig has served as an investigator for Amgen, Janssen Pharmaceuticals, LEO Pharma, Eli Lilly and Company, MSD, Pfizer Inc, and VBL Therapeutics; as a consultant for Amgen, Boehringer Ingelheim, Merck-Serono, and VBL Therapeutics; and as a consultant and speaker for AbbVie Pharmaceuticals, Celgene Corporation, Janssen Pharmaceuticals, LEO Pharma, MSD, and Pfizer Inc. Dr Reich has served as an investigator, advisory board member, speaker, and/or consultant for AbbVie Pharmaceuticals, Amgen, Biogen-Idec, Celgene Corporation, Centocor, Covagen, Eli Lilly and Company, Forward Pharma, GlaxoSmithKline, Janssen-Cilag, LEO Pharma, Medac Pharma, MSD, Novartis Pharmaceuticals Corporation, Ocean Pharma, Pfizer Inc, Takeda Pharmaceutical Company, and Vertex Pharmaceuticals. Dr van de Kerkhof has served as an investigator for Abbott Laboratories, Amgen, Basilea, Janssen-Cilag, Pfizer Inc, and Philips, and as a consultant for Abbott Laboratories, Almirall, Amgen, Celgene Corporation, Centocor, Eli Lilly and Company, Galderma, Janssen-Cilag, LEO Pharma, Pfizer Inc, and Philips. Presented as an e-poster at the 22nd Annual Meeting of the European Academy of Dermatology and Venereology, Istanbul, Turkey, October 2-6, 2013. Accepted for publication December 18, 2013. Reprints are not available from the authors. Correspondence to: Mark G. Lebwohl, MD, The Mount Sinai Medical Center, 5 E 98th St, 5th Fl, Box 1048, New York, NY 10029. E-mail: [email protected]. Published online February 26, 2014. 0190-9622/$36.00 Ó 2014 by the American Academy of Dermatology, Inc. http://dx.doi.org/10.1016/j.jaad.2013.12.018

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Results: The prevalence of psoriasis/PsA ranged from 1.4% to 3.3%; 79% had psoriasis alone and 21% had PsA. When rating disease severity at its worst, 27% (psoriasis) and 53% (PsA 6 psoriasis) of patients rated it as severe. Psoriasis patients indicated that their most bothersome signs or symptoms were itching (43%), scales (23%), and flaking (20%). Of psoriasis patients, 45% had not seen a physician in a year; [80% of psoriasis patients with $ 4 palms body surface area and 59% of PsA patients were receiving no treatment or topical treatment only. Of patients who had received oral or biologic therapy, 57% and 45%, respectively, discontinued therapy, most often for safety/tolerability reasons and a lack/loss of efficacy. Limitations: The survey lacked a control group, did not account for ethnic and health care system differences across countries, and was limited by factors associated with any patient survey, including accurate recall and interpretation of questions. Conclusions: Several identified unmet needs warrant additional attention and action, including improved severity assessment, PsA screening, patient awareness, and treatment options. ( J Am Acad Dermatol 2014;70:871-81.) Key words: health survey; patient satisfaction; psoriasis; psoriatic arthritis; quality of life; questionnaires.

INTRODUCTION

conducted. The Multinational CAPSULE SUMMARY Published estimates of the Assessment of Psoriasis and worldwide prevalence of Psoriatic Arthritis (MAPP) surThere remains a need to define and psoriasis range from approxvey is the first multinational, address the burden of psoriasis and imately 1% to 3%.1-4 Although large-scale probability survey psoriatic arthritis. of psoriasis and psoriatic information is available on arthritis (PsA) based on the impact of psoriasis on The Multinational Assessment of national samplings of housepatients’ lives5-10 and treatPsoriasis and Psoriatic Arthritis Survey is holds in the United States, ment patterns,3,11,12 the curthe largest probability survey of patients Canada, France, Germany, rent evidence is variable and with psoriasis and psoriatic arthritis to Italy, Spain, and United lacking in many areas, and date. Kingdom. It focuses on the numerous unmet needs Several identified unmet needs warrant diagnosis and impact of the remain, including underdiagadditional attention and action, various manifestations of nosis2,13 and suboptimal including improved severity assessment, psoriasis and PsA on healthtreatment.3,11,12,14 psoriatic arthritis screening, and related quality of life (QOL), Results of patient surveys treatment options. physicianepatient relationhave appeared in the mediships, and unmet treatment cal literature since 1968 needs. The survey also (Appendices A and B; availexplores patients’ perceptions of and satisfaction able online at www.jaad.org).11,15-41 While available with medical care and current therapies; concerns surveys offer some insight into the disease burden about the safety, tolerability, and convenience of and treatment of psoriasis, some limitations persist. current therapies; and the desire for new therapies. Generally, these surveys are not population-based, Developed with patient, advocacy group, and and many were conducted within specific physician input, the MAPP survey includes patients geographic regions, with variable methods and with psoriasis and PsA, patients not currently seeing populations.25,27,33,34,41,42 Surveys are often limited an HCP, and HCPs caring for patients with psoriasis. to patients who are currently under the care of a This unique survey aims to provide a true reflection health care provider (HCP) or are members of a of psoriasis and PsA severity and impact in psoriasis patient association.17,34,36,41,42 In addition, the community. We provide an overview of the limited information has been gathered from patients methodology and patient survey results. and physicians, particularly regarding factors that influence motivation for seeking medical care and taking and adhering to therapy. METHODS To further our understanding of how psoriasis Survey design affects patients’ lives and the unmet treatment needs The MAPP survey, conducted by Abt SRBI, from the perspectives of both patients and physicians, Inc (New York, NY) between June 2012 and a population-based survey of 3426 patients and August 2012, followed a confirmed methodology 781 physicians in North America and Europe was used for other chronic diseases43-45 and the d

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Abbreviations used: BSA: DLQI: HAQ-8: HCP: MAPP: PCP: PsA: QOL: RDD:

body surface area Dermatology Life Quality Index 8-item Health Assessment Questionnaire health care provider Multinational Assessment of Psoriasis and Psoriatic Arthritis primary care physician psoriatic arthritis quality of life random digit dialing

American Association for Public Opinion Research guidelines for developing and conducting surveys.46 Institutional review board approval was granted for data collection in the United States (Abt SRBI 5454), and the other countries abided by standards and ethical practices according to their codes or guidelines. MAPP was a systematic household telephone survey using random digit dialing (RDD) to provide a probability sample. A sample of assigned telephone banks were randomly selected from an enumeration of the Working Residential Hundreds Blocks within the active telephone exchanges of each country. Hundreds Block is defined by the first 8 digits of a 10-digit telephone number (eg, 703-42585XX). The Working Hundreds Blocks are defined as each block of 100 potential telephone numbers within an exchange that includes $ 1 residential listings. After the Working Hundreds Blocks were enumerated and selected, a 2-digit number was randomly generated by computer for each Working Residential Hundreds Block selected, also known as list-assisted RDD. Because the last 2 digits are randomly generated, every telephone number within the Hundreds Block has an equal probability of selection, regardless of whether it is listed or unlisted. The RDD sample of telephone numbers was dialed to determine currently working residential household telephone numbers. Nonworking and nonresidential numbers were immediately replaced by other RDD numbers selected within the same stratum in the same fashion as the initial number. Ineligible households (eg, no eligible respondent in the household or language barriers) were also replaced. Numbers that were not answered were not replaced until the research protocol was exceeded. However, $ 1 open numbers per case were permitted to complete the survey within a reasonable period of time. The telephone survey was conducted in the United States, Canada, France, Germany, Italy, Spain, and United Kingdom to identify adults with psoriasis. Household members $ 18 years of age were asked to participate in the full survey if they had

ever been diagnosed with psoriasis and/or PsA by an HCP (Appendix C; available online at www.jaad. org). One patient was selected randomly in households with [1 eligible patient. Interviews in the United States averaged 23 minutes. In Canada and Europe, the interview averaged 28 minutes because the translated questionnaire was longer. A minimum of 400 patient interviews were planned per country for a maximum expected sampling error of 61.7 percentage points at the 95% confidence interval level (US, 63.1%; rest of the sample, 64.9%). Overall, 139,948 households were screened and 3426 patients completed the survey (Table I). This report reflects results of the international findings. Results for North America and Europe are included only when notable differences in the responses were observed. Actual sample sizes were based on unweighted raw numbers. Global responses were weighted geographically based on household prevalence.

RESULTS The household prevalence of psoriasis and/or PsA ranged from 2.9% in France to 6.5% in Canada; the extrapolated population prevalence ranged from 1.4% in Spain to 3.3% in Canada (Table II). Of the 3426 patients surveyed, 79% indicated a current diagnosis of psoriasis alone and 21% had PsA with or without psoriasis. The mean age was 54.8 years, and the majority of patients were female (59%) and overweight or obese (64%; Table III). Disease history In patients with psoriasis, the mean delay between the onset of skin signs/symptoms and diagnosis was 2 years. In patients with PsA, an average of 5 years elapsed between sign/symptom onset and diagnosis. In patients who had received a diagnosis for both psoriasis and PsA, 72% developed skin signs/symptoms first, 21% developed joint symptoms first, and 7% developed skin and joint symptoms concurrently; 27% of respondents were diagnosed with psoriasis and PsA at the same time. In North America, nearly twice as many patients (24%) had joint symptoms appear first compared with the European countries (13%). The mean age at diagnosis was 34 years for psoriasis patients and 42 years for PsA patients. Fig 1 compares the current age, age at symptom onset, and age at diagnosis of respondents with psoriasis. Current symptoms The most commonly reported symptom related to their skin disease in both psoriasis and PsA patients

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Table I. Households screened by country Country

Canada France Germany Italy Spain United Kingdom United States Total

Households screened, n

Response rate, %

Qualified,* n

Excluded,y n

Complete sample, n

7289 18,345 13,750 12,785 21,013 13,840 52,926 139,948

13.6 40.5 29.2 60.8 34.2 41.2 31.6

466 NA 562 491 522 472 1806

66 NA 156 91 122 72 801

400 415 406 400 400 400 1005 3426

NA, Not available. *Initial screening indicated that a member of the household had a diagnosis of psoriasis and/or psoriatic arthritis. Because of geographic differences in initial screening, numbers are not comparable across countries. y Reasons for exclusion include household member ineligible for survey, unable to recontact, or patient declined participation.

Table II. Household and population prevalence of psoriasis and/or psoriatic arthritis Prevalence, % Country

Canada France Germany Italy Spain United Kingdom United States Overall

Household

Population

6.5 2.9 3.5 4.3 3.1 3.9 4.0 3.8

3.3 1.5 1.7 1.8 1.4 2.0 2.2 1.9

was itching. Approximately two-thirds of patients with psoriasis reported current itching (67%), scales (67%), redness (66%), and flaking (63%); these signs/ symptoms were reported by 74%, 73%, 71%, and 71% of patients with both psoriasis and PsA, respectively. Forty-five percent of the patients with PsA reported pain associated with their skin symptoms compared with 21% with psoriasis alone. Skin symptoms in psoriasis patients were most commonly located on the scalp (48%) and elbows (46%), followed by the knees (31%) and trunk (24%). The face (15%), palms (12%), nails (11%), soles (11%), and genitals (7%) were also affected. Joint pain was reported by 89% of patients with PsA and 44% with a diagnosis of psoriasis but not PsA. Fifty-one percent of patients with psoriasis in North America reported joint pain compared with 36% in the European countries. In patients with joint pain or soreness, 12% had monoarticular symptoms and 42% had [4 joints affected. Nearly half of patients in North America (49%) had [4 joints affected compared with 30% in European countries. Patients with PsA reported joint pain in their knees (41%), fingers (26%), hips (19%), back/spine (18%), ankles (19%), and wrists (16%). Patients with

Table III. Baseline demographics of the study population Total study population Mean age, y (median) Age range, y Male sex, n (%) BMI, kg/m2, n (%) Underweight (\18.5) Normal (18.5-24.9) Overweight (25-29.9) Obese ($ 30) Diagnosis of PsA, n (%)* Comorbidities, n (%) Arthritis Cancer Crohn’s disease Depression Diabetes Heart disease Hypertension Liver disease Ulcerative colitis Uveitis Other None

3426 54.8 (56.0) 18-97 1400 (40.9) 49 1172 1318 887 712

(1.4) (34.2) (38.5) (25.9) (20.8)

1179 189 49 626 489 345 1121 71 80 20 231 1182

(34.4) (5.5) (1.4) (18.3) (14.3) (10.1) (32.7) (2.1) (2.3) (0.6) (6.7) (34.5)

Data are weighted based on the population prevalence of psoriasis and PsA and the overall population within each country. n reflects the total number of patients surveyed; the actual number of patients answering each question may vary. BMI, Body mass index; PsA, psoriatic arthritis. *And/or a separate diagnosis of psoriasis.

psoriasis reported a similar rate of joint pain in their knees (45%) and lower rates of joint pain in their fingers (19%), hips (16%), back/spine (14%), ankles (11%), and wrists (8%). When asked if they had pain or swelling of the heel or ‘‘sausage digits’’ (ie, pain or swelling of an entire finger), these symptoms, possibly consistent with dactylitis and enthesitis, were reported by 45% and 31% of patients with

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Fig 1. Histogram comparing current age, age at symptom onset, and age at diagnosis in men and women.

PsA and 26% and 16% with psoriasis alone, respectively. Self-perceived severity Using a rating scale of 1 (very mild) to 10 (very severe), 27% of patients with psoriasis and 53% of patients with PsA rated their disease as severe (8-10). More PsA patients in North America rated their disease as severe compared with European countries (60% vs 40%). Self-perceived severity generally correlated with the body surface area (BSA) affected based on palm counts in patients with psoriasis. However, 22% of psoriasis patients with a BSA of # 3 palms rated their disease as severe (Fig 2, A). In PsA patients with a diagnosis of psoriasis or those who reported current skin signs/symptoms, there was a high level of patient-reported severity across degrees of skin involvement (Fig 2, B). Patients with psoriasis indicated itching (43%), scales (23%), and flaking (20%) as the most bothersome skin signs/symptoms (Fig 3, A). Similarly, 40% of PsA patients with skin symptoms rated itching as the most bothersome, followed by lesional pain (19%). The most important factors contributing to disease severity were itching (38%) and location and size of skin lesions (17%) in patients with psoriasis and pain/swelling of joints (45%) and itching (18%) in patients with PsA (Fig 3, B). Impact on quality of life The impact of psoriasis on patient QOL, as assessed by the Dermatology Life Quality Index (DLQI), increased with palm-assessed BSA; however, even in patients with # 3 palms, almost one-quarter reported a substantial (DLQI [5) disease-related impact on their life (Fig 4). The mean 8-item Health Assessment Questionnaire (HAQ-8) score was 0.39 for patients reporting joint

Fig 2. Self-perceived severity by body surface area in (A) psoriasis and (B) psoriatic arthritis patients.

Fig 3. (A) The most bothersome skin symptoms and (B) the most important factors contributing to disease severity.

pain and soreness compared with 0.06 in patients without joint symptoms, and 0.49 in patients with PsA compared with 0.16 in patients with psoriasis. Overall, PsA patients with joint pain or soreness reported a greater impact on HAQ-8 domains as the

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Table IV. Current and previous medical care in psoriasis and PsA patients Psoriasis patients, %

PsA patients, %

North Current or previous medical North America Europe America Europe care

Fig 4. Dermatology Life Quality Index (DLQI) scoring distribution by body surface area in psoriasis patients. Higher DLQI scores indicate poorer functioning.

number of affected joints increased. PsA patients with [4 affected joints answered ‘‘much difficulty’’ or ‘‘unable to do’’ for bending down to pick up clothing from the floor (26%), walking outdoors on flat ground (18%), dressing themselves (15%), getting in and out of bed or the car (15%), washing and drying their body (12%), turning faucets on and off (8%), and lifting a full cup or glass to their mouth (7%). Medical care Overall, 52% of psoriasis patients and 83% of PsA patients indicated that they had seen an HCP in the previous 12 months for their condition. Results were generally consistent between North America and Europe, with slightly higher rates of HCP visits in North America (Table IV). Of psoriasis patients, 78% reported ever having seen a dermatologist for their psoriasis. Psoriasis patients who had seen an HCP in the previous 12 months most often saw a dermatologist (55%) or primary care physician (PCP; 34%). However, 47% of psoriasis patients had not seen an HCP in the previous 12 months for their psoriasis; 19% stated that this was because they did not believe their HCP could help. Others stated that their symptoms were not bad enough (35%) to see an HCP, they had no symptoms (24%), or they were unable to get an appointment (2%). Of PsA patients, 71% reported ever seeing a rheumatologist for their PsA. Patients who had seen an HCP in the last 12 months most often saw a rheumatologist (37%), followed by a PCP (28%) and dermatologist (24%). The primary reasons for PsA patients not seeing their HCP was that they did not believe an HCP could help (30%) or their symptoms were not bad enough (30%); other reasons included no symptoms (20%), their current treatment was working (6%), and cost or no insurance (5%).

Have seen HCP in last 12 months Type of HCP seen most often for psoriasis/ PsA Dermatologist Rheumatologist General medicine/ primary care Other/don’t know Have not seen HCP in last 12 months Ever seen dermatologist (psoriasis) or rheumatologist (PsA)

55

49

85

77

54 1 34

55 1 35

22 38 28

28 37 28

11 45

9 51

12 15

7 22

78

78

68

75

HCP, Health care provider; PsA, psoriatic arthritis.

Fig 5. Current treatment by body surface area in psoriasis and psoriatic arthritis patients.

Treatment patterns Current and previous treatment patterns were assessed in all patients, whether or not they had seen an HCP in the past 12 months. Most psoriasis patients with a BSA of $ 4 palm lesions were receiving no treatment or topical therapy alone (Fig 5). In addition, 59% of PsA patients were not receiving any medication for their PsA (no treatment or topical therapy only). Overall, 24% of all patients said they had been prescribed a traditional oral medication for their disease (eg, cyclosporine, methotrexate, acitretin, or fumaric acid esters) at some point since their diagnosis; of these, 43% were receiving therapy and 57% had discontinued use. Of the 11% of patients who indicated previous or current biologic

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Table V. Treatment burden: Oral and biologic therapies Treatment burden

Still taking, % Discontinued, % Reasons for discontinuing* Tolerability/safety, % Lack or loss of effectiveness, % Injection site reaction/needle fatigue/injection anxiety, % Disruption of daily activities/inconvenient, % Comorbidities, % No longer needed, % New/different options available, % Cost/insurance coverage, % HCP recommendation, % Part of clinical trial, % Other, % Reasons for being burdensome (ever used)* Fear, anxiety, or inconvenience of injections, % Adverse effects/abnormal laboratory tests, % Pain/discomfort, % Laboratory monitoring, % Fear of adverse effects, % Inconvenient, % Lack/loss of effectiveness, % Cost/insurance issues, % Other, % Not burdensome, % Reasons for being burdensome (current users)* Fear, anxiety, or inconvenience of injections, % Adverse effects/abnormal blood tests, % Pain/discomfort, % Laboratory monitoring, % Fear of adverse effects, % Inconvenient, % Lack/loss of effectiveness, % Cost/insurance issues, % Other, % Not burdensome, % Reasons for being burdensome (former users)* Fear, anxiety, or inconvenience of injections, % Adverse effects/abnormal blood tests, % Laboratory monitoring, % Fear of adverse effects, % Inconvenient, % Lack/loss of effectiveness, % Cost/insurance issues, % Other, % Not burdensome, %

Ever used oral therapies (N = 820)

Ever used biologic therapies (N = 389)

43 57 n = 464 43 30 — 8 2 10 5 — — — 8 n = 820 — 30 — 12 0.5 14 2 1 3 46 n = 356 — 25 — 12 — 16 — 1 2 49 n = 464 — 33 11 1 12 4 0.4 3 44

55 45 n = 175 25 22 10 3 3 11 — 11 8 4 13 n = 389 26 15 7 — 5 15 2 1 3 48 n = 214 31 12 5 — 4 20 1 2 4 45 n = 175 18 15 — 5 10 4 0.5 1 52

*Could indicate [1 reason.

use, 55% were taking a biologic and 45% had discontinued therapy (Table V). Treatment burden Traditional oral therapies were most often discontinued for safety and tolerability issues (43%) and

a lack or loss of effectiveness (30%; Table V). Among patients who had ever received a biologic therapy, the most common reasons for discontinuation were also safety and tolerability issues (25%) and a lack or loss of effectiveness (22%). About half of those who had received traditional oral medications found

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these therapies burdensome, primarily because of adverse effects, inconvenience, and the need for laboratory monitoring. Likewise, about half of patients indicated that biologics were burdensome, primarily because of anxiety/fear of injections and physical preparation for self-injection (eg, icing and premedicating), inconvenience, and adverse effects. Overall, results were similar in current and former users of both traditional oral and biologic medications. Of note, in patients who had ever received biologics, fear, anxiety, and/or physical preparation of injections were cited as burdensome by 31% of current compared with 18% of former users, while inconvenience was cited by 20% of current and 10% of former users. Only 25% of patients who received traditional oral therapies were very satisfied overall; 21% were very satisfied with long-term safety and 26% were very satisfied with efficacy over time. However, 50% of patients expressed concern about the health risks of long-term oral therapy. Overall, 45% of patients who received biologics were very satisfied, with 29% very satisfied with the long-term safety of the medication and 46% with efficacy over time. The health risks of long-term biologic therapy were a concern for 53% of patients. Overall, 46% of patients agreed that using currently available therapies for psoriasis and PsA can be worse than the condition itself, and 85% felt that there is a need for better therapies.

DISCUSSION The MAPP survey is the largest multinational probability survey of patients with psoriasis and PsA. It was conducted without the bias of a specific clinic or geographic region and was not limited by current medical care or enrollment in a patient association. The MAPP survey included validated QOL assessments (ie, DLQI and HAQ-8) and an assessment of qualitative factors related to medical care to seek reasons why patients find their disease and treatment burdensome. This report focuses on the findings from the patient survey. Population prevalence ranged from 1.4% to 3.3% and was 1.9% across all 7 countries. Survey results indicate that the majority of patients developed psoriasis first, followed by a diagnosis of PsA an average of approximately 8 years later in approximately 20% of patients. Patients reported a high rate of current symptoms, including two-thirds with psoriasis and nearly three-quarters with both psoriasis and PsA. Survey results confirm the profound effect of psoriasis on patient QOL and functioning, as assessed by DLQI and HAQ-8. These findings parallel those seen in a recent National Psoriasis Foundation

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report, which found that for the majority of psoriasis patients, their psoriasis activity had an effect on overall well being, with greater physical and emotional impact as disease severity increases.42 In addition, patients in our survey reported that the concomitant presence of joint symptoms had a substantial effect on disease severity and burden. Nearly twice as many patients with both psoriasis and PsA rated their disease as severe compared with those with psoriasis alone. HAQ-8 scores were 3 to 6 times higher for patients with PsA or symptoms of joint pain and soreness than for those without PsA or joint symptoms. A large proportion of patients (42%) reported they had $ 4 joints affected. However, it should be noted that reporting of the number of joints affected may be overestimated because patients may mistake nonarticular for articular pain or underestimated because some patients may count a digit or region as 1 joint. Joint pain was reported by 44% of patients with a diagnosis of psoriasis only, with approximately one-third of these patients reporting symptoms resembling dactylitis and/or enthesitis. These findings suggest that improved screening and assessment of psoriasis patients for PsA across medical specialties may be warranted. Self-perceived severity among psoriasis patients generally correlated with BSA; however, almost onequarter of patients with BSA of # 3 palms rated their disease as severe. A closer look at the assessment of psoriasis severity may be warranted. For example, the most commonly reported skin symptom in both psoriasis and PsA patients was itching, which was also cited as the most bothersome. Although pruritus is increasingly being recognized as an important symptom in psoriasis, it is not captured in any currently used assessment tools, suggesting that the way in which patients and HCPs define severity may differ.47 The high rate of patients reporting their disease as severe differs from that found when using BSA levels,2 but reflects recent observations that the severity of disease may be greater than previously thought,17,18 and that guidelines for rating disease severity need to be reassessed. Patient-reported disease severity reflected their disease at its worst, which makes comparisons with current skin or joint symptoms difficult. However, regardless of perceived disease severity, patients’ reasons for not seeing an HCP in the past 12 months were primarily because they did not think the HCP could help or their symptoms were not severe enough. These findings suggest a mismatch between patient perceptions and treatment goals, and may also indicate a lack of patient awareness regarding the long-term management of psoriasis and PsA and the available treatment options.


Survey results suggest that many patients are undertreated or are not being treated systematically. Nearly three-quarters of patients reported current signs/symptoms of itching, redness, scales, and flaking, whether or not they were currently being managed by an HCP or receiving treatment. The majority of psoriasis patients with a BSA of $ 4 palms were receiving no treatment or only topical therapy. Approximately 15% of PsA patients had not seen an HCP in the last 12 months, and almost 30% of those who had seen an HCP indicated that they saw their PCP most often for their PsA. Almost 60% of PsA patients were not being treated for their joint disease. At the time of the survey, only 10% of all patients were receiving a traditional oral therapy and 6% were receiving a biologic. Although phototherapy was not captured in this survey, recent large surveys have found its use to be low.11,36 In addition, the survey did not specifically address costs associated with treatment, which may have an impact on patient use and adherence to medications. Patient satisfaction with traditional oral and biologic therapies for psoriasis revealed some key similarities and differences. Overall, discontinuation rates were higher with traditional oral therapies than with biologic therapies, but the reasons for discontinuation were similar (ie, safety and tolerability or a lack or loss of effectiveness). About half of patients found their oral or biologic therapies for psoriasis burdensome, and most felt that better treatment options are needed. Traditional oral medications were burdensome primarily because of adverse effects, the need for laboratory monitoring, and inconvenience, whereas biologics were burdensome primarily because of fear and anxiety regarding administration and inconvenience of administration. Only 25% of patients who received oral therapies were very satisfied with the treatment, and half expressed concern regarding the health risks associated with long-term treatment. Forty-five percent of patients who received biologic therapies were very satisfied with the treatment, and only 29% were very satisfied with their long-term safety. These findings suggest that some patients may not initiate or continue effective therapies because of the challenges associated with the currently available systemic treatment options, including long-term efficacy and safety, along with the fear and anxiety surrounding injections. The treatment rates reported in the current survey and the proportion of patients who had seen an HCP within the past 12 months are lower than those reported in recently published results from surveys of National Psoriasis Foundation members.48,49 This may reflect the bias introduced by patients who

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voluntarily chose to be a member of a patient organization. These patients have actively maintained membership, and their views may not represent the patients who do not seek patient advocacy group membership. While the National Psoriasis Foundation survey included members of the patient organization, the MAPP survey did not require membership in any patient organization or require that participants be currently under the care of a physician. However, similarly, both surveys found a high proportion of patients to be dissatisfied with their current treatment. Differences in responses between patients in North America and Europe were primarily related to joint disease and symptoms. Almost twice as many North Americans (24%) experienced joint symptoms first compared with Europeans (13%). Joint pain was reported more often by North Americans without a PsA diagnosis (51%) compared with Europeans (36%), and more North Americans (49%) had [4 joints affected compared with Europeans (30%). A greater proportion of North Americans with PsA rated their disease as severe compared with Europeans (60% vs 40%). Further analyses and publications are planned to assess reasons for these and other differences between North America and Europe. The MAPP survey findings are limited by factors associated with any patient survey, including accurate recall and interpretation of questions. The survey was blinded; therefore, patients cannot be recontacted for follow-up or clarification of answers. The survey design lacked a control group and did not assess differences between specific drugs or the impact of direct and indirect treatment costs. As mentioned, some differences were observed between North Americans and Europeans; several factors may be involved, including differences in ethnicity, which were not examined, and health care system requirements or restraints. Additional analyses for between-continent and -country differences are ongoing to increase insight into these data. The MAPP survey also incorporates physicians’ perspectives regarding the care of patients with psoriasis; these results are forthcoming. In summary, these results provide populationbased estimates of the prevalence of psoriasis in 7 countries and extend the current knowledge base by providing insight into patients’ self-perceived severity, current treatment patterns, and attitudes toward therapies. This survey uncovers several unmet needs that warrant further attention and action. Our findings suggest that there is a high rate of undertreatment of both psoriasis and PsA and a mismatch between patient and physician assessment

880 Lebwohl et al

of severity. The MAPP survey highlights the importance of screening and assessment of psoriasis patients for symptoms of PsA, the need to establish patient-specific treatment goals—which ensure optimal treatment regimens and realistic expectations with regard to the effectiveness and tolerability of available treatments—and the ongoing need for safe and effective therapies for patients with psoriasis and PsA. REFERENCES 1. Augustin M, Reich K, Glaeske G, Schaefer I, Radtke M. Co-morbidity and age-related prevalence of psoriasis: analysis of health insurance data in Germany. Acta Derm Venereol 2010;90:147-51. 2. Kurd SK, Gelfand JM. The prevalence of previously diagnosed and undiagnosed psoriasis in US adults: results from NHANES 2003-2004. J Am Acad Dermatol 2009;60:218-24. 3. Menter A, Gottlieb A, Feldman SR, Van Voorhees AS, Leonardi CL, Gordon KB, et al. Guidelines of care for the management of psoriasis and psoriatic arthritis: section 1. Overview of psoriasis and guidelines of care for the treatment of psoriasis with biologics. J Am Acad Dermatol 2008;58:826-50. 4. Ferrandiz C, Bordas X, Garcia-Patos V, Puig S, Pujol R, Smandia A. Prevalence of psoriasis in Spain (Epiderma Project: phase I). J Eur Acad Dermatol Venereol 2001;15:20-3. 5. Chan B, Hales B, Shear N, Ho V, Lynde C, Poulin Y, et al. Work-related lost productivity and its economic impact on Canadian patients with moderate to severe psoriasis. J Cutan Med Surg 2009;13:192-7. 6. Kimball AB, Jacobson C, Weiss S, Vreeland MG, Wu Y. The psychosocial burden of psoriasis. Am J Clin Dermatol 2005;6: 383-92. 7. Meyer N, Paul C, Feneron D, Bardoulat I, Thiriet C, Camara C, et al. Psoriasis: an epidemiological evaluation of disease burden in 590 patients. J Eur Acad Dermatol Venereol 2010; 24:1075-82. 8. Rapp SR, Feldman SR, Exum ML, Fleischer AB Jr, Reboussin DM. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol 1999;41(3 pt 1):401-7. 9. Reich A, Hrehorow E, Szepietowski JC. Pruritus is an important factor negatively influencing the well-being of psoriatic patients. Acta Derm Venereol 2010;90:257-63. 10. Wu Y, Mills D, Bala M. Impact of psoriasis on patients’ work and productivity: a retrospective, matched case-control analysis. Am J Clin Dermatol 2009;10:407-10. 11. Horn EJ, Fox KM, Patel V, Chiou CF, Dann F, Lebwohl M. Are patients with psoriasis undertreated? Results of National Psoriasis Foundation survey. J Am Acad Dermatol 2007;57: 957-62. 12. Nast A, Reytan N, Rosumeck S, Erdmann R, Rzany B. Low prescription rate for systemic treatments in the management of severe psoriasis vulgaris and psoriatic arthritis in dermatological practices in Berlin and Brandenburg, Germany: results from a patient registry. J Eur Acad Dermatol Venereol 2008;22: 1337-42. 13. Gladman DD, Antoni C, Mease P, Clegg DO, Nash P. Psoriatic arthritis: epidemiology, clinical features, course, and outcome. Ann Rheum Dis 2005;64(Suppl 2):ii14-7. 14. Spuls PI, Lecluse LL, Poulsen ML, Bos JD, Stern RS, Nijsten T. How good are clinical severity and outcome measures for psoriasis? Quantitative evaluation in a systematic review. J Invest Dermatol 2010;130:933-43.

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MAY 2014

15. Farber EM, Bright RD, Nall ML. Psoriasis. A questionnaire survey of 2,144 patients. Arch Dermatol 1968;98:248-59. 16. Poyner TF, Fell PJ. A survey of patients with plaque psoriasis. J Dermatolog Treat 1995;6:199. 17. Krueger G, Koo J, Lebwohl M, Menter A, Stern RS, Rolstad T. The impact of psoriasis on quality of life: results of a 1998 National Psoriasis Foundation patient-membership survey. Arch Dermatol 2001;137:280-4. 18. Gelfand JM, Feldman SR, Stern RS, Thomas J, Rolstad T, Margolis DJ. Determinants of quality of life in patients with psoriasis: a study from the US population. J Am Acad Dermatol 2004;51:704-8. 19. Fouere S, Adjadj L, Pawin H. How patients experience psoriasis: results from a European survey. J Eur Acad Dermatol Venereol 2005;19(suppl 3):2-6. 20. Nakagawa H, Igarashi A, Etoh T, Ozawa A, Nemoto O. The results of a psoriasis patients’ satisfaction survey (second report): analysis of factors contributing to overall satisfaction [in Japanese]. Jpn J Dermatol 2005;115:1449-59. 21. Dubertret L, Mrowietz U, Ranki A, van de Kerkhof PC, Chimenti S, Lotti T, et al. European patient perspectives on the impact of psoriasis: the EUROPSO patient membership survey. Br J Dermatol 2006;155:729-36. 22. Nijsten T, Margolis DJ, Feldman SR, Rolstad T, Stern RS. Traditional systemic treatments have not fully met the needs of psoriasis patients: results from a national survey. J Am Acad Dermatol 2005;52(3 pt 1):434-44. 23. Altobelli E, Maccarone M, Petrocelli R, Marziliano C, Giannetti A, Peris K, et al. Analysis of health care and actual needs of patients with psoriasis: a survey on the Italian population. BMC Public Health 2007;7:59. 24. Wasel N, Poulin Y, Andrew R, Chan D, Fraquelli E, Papp K. A Canadian self-administered online survey to evaluate the impact of moderate-to-severe psoriasis among patients. J Cutan Med Surg 2009;13:294-302. 25. Radtke MA, Reich K, Blome C, Rustenbach S, Augustin M. Prevalence and clinical features of psoriatic arthritis and joint complaints in 2009 patients with psoriasis: results of a German national survey. J Eur Acad Dermatol Venereol 2009; 23:683-91. 26. Mahler R, Jackson C, Ijacu H. The burden of psoriasis and barriers to satisfactory care: results from a Canadian patient survey. J Cutan Med Surg 2009;13:283-93. 27. Lynde CW, Poulin Y, Guenther L, Jackson C. The burden of psoriasis in Canada: insights from the pSoriasis Knowledge IN Canada (SKIN) survey. J Cutan Med Surg 2009;13:235-52. 28. Tan J, Stacey D, Fung K, Barankin B, Bissonnette R, Gulliver W, et al. Treatment decision needs of psoriasis patients: crosssectional survey. J Cutan Med Surg 2010;14:233-9. 29. Kamangar F, Isip L, Bhutani T, Dennis M, Heller MM, Lee ES, et al. How psoriasis patients perceive, obtain, and use biologic agents: survey from an academic medical center. J Dermatolog Treat 2013;24:13-24. 30. Schaarschmidt ML, Schmieder A, Umar N, Terris D, Goebeler M, Goerdt S, et al. Patient preferences for psoriasis treatments: process characteristics can outweigh outcome attributes. Arch Dermatol 2011;147:1285-94. 31. Yazigi Sabbag C, Prado Goncalves E. Brazilian survey with patients with psoriasis. Revista Latinoamericana de Psoriasis y Artritis Psoriasica 2011;3:7-14. 32. Hjortsberg C, Bergman A, Bjarnason A, Heikkila H, Hjelmgren J, Svensson A, et al. Are treatment satisfaction, quality of life, and self-assessed disease severity relevant parameters for patient registries? Experiences from Finnish and Swedish patients with psoriasis. Acta Derm Venereol 2011;91:409-14.


33. Anstey A, McAteer H, Kamath N, Percival F. Extending psychosocial assessment of patients with psoriasis in the UK, using a self-rated, web-based survey. Clin Exp Dermatol 2012; 37:735-40. 34. Langenbruch AK, Radtke MA, Augustin M. Quality of psoriasis care from the patients’ perspective - results of the national health care study PsoReal. Eur J Dermatol 2012;22:518-24. 35. National Psoriasis Foundation web site. 2011 survey panel snapshot. Available at: www.psoriasis.org/document.doc? id=1782. Accessed January 20, 2014. 36. The Finnish Psoriasis Association (Psoriasisliitto) web site. The EUROPSO psoriasis patient study: treatment history and satisfaction reported by 17,990 members of European psoriasis patient associations. Available at: http://www.psori.fi/fin/ in_english/. Accessed January 20, 2014. 37. International Federation of Psoriasis Association web site. Psoriasis uncovered 2011. Available at: http://www. underthespotlight.com/about-psoriasis/psoriasis-uncovered2011.aspx. Accessed January 20, 2014. 38. Psoriasis Australia web site. Psoriasis uncovered in Australia: results of a patient survey. Available at: http://psoriasisaustralia. org.au/wp-content/themes/vision/images/Psoriasis_Uncovered_ Survey_Findings.pdf. Accessed January 20, 2014. 39. The Operating Theatre Journal web site. National survey results from The Psoriasis Association reveal widespread inconsistencies in the care and management of people with psoriasis. Available at: http://www.otjonline.com/news2011/ 11/news01a.php. Accessed January 20, 2014. 40. PR Newswire web site. International study highlights need to support patients with psoriasis suffering feelings of isolation, stigmatisation and anxiety. Available at: http://multivu. prnewswire.com/mnr/prne/leo-pharma/56611/. Accessed January 20, 2014.

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41. van Cranenburgh OD, de Korte J, Sprangers MA, de Rie MA, Smets EM. Psoriasis patients’ satisfaction with treatment: a web-based survey study. Br J Dermatol 2013;169:398-405. 42. Armstrong AW, Schupp C, Wu J, Bebo B. Quality of life and work productivity impairment among psoriasis patients: findings from the National Psoriasis Foundation survey data 2003-2011. PLoS One 2012;7:e52935. 43. Meltzer EO, Blaiss MS, Derebery MJ, Mahr TA, Gordon BR, Sheth KK, et al. Burden of allergic rhinitis: results from the Pediatric Allergies in America survey. J Allergy Clin Immunol 2009;124(3 suppl):S43-70. 44. Adams RJ, Fuhlbrigge A, Guilbert T, Lozano P, Martinez F. Inadequate use of asthma medication in the United States: results of the asthma in America national population survey. J Allergy Clin Immunol 2002;110:58-64. 45. Rabe KF, Vermeire PA, Soriano JB, Maier WC. Clinical management of asthma in 1999: the Asthma Insights and Reality in Europe (AIRE) study. Eur Respir J 2000;16:802-7. 46. American Association for Public Opinion Research web site. Best practices. Available at: http://www.aapor.org/ Best_Practices1.htm. Accessed January 20, 2014. 47. Feldman SR, Krueger GG. Psoriasis assessment tools in clinical trials. Ann Rheum Dis 2005;64(suppl 2):ii65-8. 48. Armstrong AW, Robertson AD, Wu J, Schupp C, Lebwohl MG. Undertreatment, treatment trends, and treatment dissatisfaction among patients with psoriasis and psoriatic arthritis in the United States: findings from the National Psoriasis Foundation surveys, 2003-2011. JAMA Dermatol 2013;149:1180-5. 49. Bhutani T, Wong JW, Bebo BF, Armstrong AW. Access to health care in patients with psoriasis and psoriatic arthritis: data from National Psoriasis Foundation survey panels. JAMA Dermatol 2013;149:717-21.

Author and date (survey name)

Farber et al, 1968

A1

Methods and objectives

Questionnaire for psoriasis patients collected by dermatologists between 1959-1968

Sample size

2144

Geography

United States

Mail questionnaire for psoriasis patients who had not consulted their general practitioner in 12 months

Krueger et al, 2001 (NPF)A3

Mail survey assessed the impact of psoriasis on patient lifestyle, emotional well being, and satisfaction with disease management

6194

United States

Gelfand et al, 2004 (NPF QOL Survey)A4

Telephone/Internet survey described the determinants of QOL in psoriasis patients

266

United States

Fouere et al, 2005A5

Mail survey to European patient associations assessed psoriasis experience and treatment compliance

1281

194

United Kingdom

France, United Kingdom, Belgium, Germany, the Netherlands

MAY 2014

Scalp, elbows, and lower extremities were most commonly affected areas at onset; warm weather and sunlight had beneficial effect; one-fourth had arthritis; 62-71% reported arthritis symptoms after developing psoriasis; 39% of men and 59% of women experienced remission of psoriasis [60% had plaque psoriasis for [10 years; onethird visited their physician during the most recent recurrence of psoriasis; most important features of an ideal topical therapy were efficacy (88%), ease of use (69%), nonstaining (67%), and good tolerability (64%) Most frequent skin symptoms were scales (94%), itching (79%), and redness (71%); 39% reported psoriasis covered $ 10% of their bodies; 79% reported psoriasis had a negative impact on their lives; 40% were frustrated by the ineffectiveness of their therapy; 32% reported treatment was not aggressive enough Relatively minimal psoriasis resulted in significant decrements in QOL; extent of skin involvement with psoriasis was moderately correlated with impairment of HRQOL per PDI; psoriasis disability was associated with patients seeking care from multiple physicians; extent of psoriasis and PDI negatively correlated with income status About one-third had psoriasis on the face, skin folds, or genital areas; 74% considered their psoriasis to be at least moderately severe; 73% admitted noncompliance with their treatment regimen; main reasons for noncompliance with treatment were lack of efficacy and messiness

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Poyner and Fell, 1995A2

Key findings

881.e1 Lebwohl et al

Appendix A. Previously published patient surveys in psoriasis

Dubertret et al, 2006 (EUROPSO I)A7

Mail survey assessed the impact of psoriasis on the QOL of European patients and patients’ perceptions of current treatments

Nijsten et al, 2005 (NPF)A8

Interview assessed patient satisfaction with treatment options available before 2002

685

17,990

1197

Japan

Belgium, Czech Republic, Finland, France, Germany, Italy, the Netherlands

United States

9.8% were ‘‘very satisfied’’ with treatment; 19% were ‘‘very satisfied’’ or ‘‘satisfied’’ with treatment effectiveness and improvement in stress; symptomatic improvement was most influential factor (52%) contributing to overall satisfaction 75% had chronic plaque psoriasis; 30% had PsA; negative aspects of psoriasis treatment for moderate to severe disease included time consuming (50%), ineffective (32%), expensive (30%), and adverse effects (26%); 21% were not receiving medical care; 58% were treated by a dermatologist, 34% by a general or family practitioner; 58% of PsA patients were treated by a rheumatologist; 40% did not receive any prescription medication; 32% received topical treatment, 17% oral/systemic, and 13% phototherapy; only 27% were ‘‘highly satisfied’’ with treatment: MTX (30%), fumarate (26%), cyclosporine (28%), and PUVA (38%) 311 (26%) indicated current or past use of MTX, PUVA, cyclosporine, and/or acitretin; more than one-third were dissatisfied with each therapy, except PUVA (14%); patients were most satisfied with MTX and PUVA; # 40% were ‘‘very satisfied’’ with any of the 4 therapies assessed

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Questionnaire for physicians and patients evaluated symptoms, improvement in stress, and patient satisfaction

VOLUME 70, NUMBER 5

Nakagawa et al, 2005A6

Continued

Lebwohl et al 881.e2

Author and date (survey name) A9


Sample size

Geography

1657

United States

Altobelli et al, 2007A10

In-person written survey evaluated the quality of assistance at public dermatologic clinics and information requirements of psoriasis patients

1954

Italy

Wasel et al, 2009A11

Online survey using consumer panel assessed severity and impact of psoriasis

514

Radtke et al, 2009A12

Paper questionnaire (patients)/telephone follow-up (physicians) designed to determine prevalence and clinical features of PsA and joint complaints in patients with psoriasis

2009

Canada

Germany

z43% in 2003 reported no treatment vs 40% in 2004 and 35% in 2005; of those on any current treatment (n = 1003), 68% received topical therapy, 6% phototherapy, 14% traditional systemic therapy, and 12% biologic therapy; 57% with severe psoriasis received topical therapy only; for severe psoriasis, 15% received biologic therapy, 22% traditional systemic therapy, and 6% phototherapy; fewer respondents with moderate psoriasis (27%) received systemic therapy (biologic therapy or traditional systemic therapy) or phototherapy vs severe psoriasis (43%); \10% used phototherapy at any severity level for each year of the 3-year study 26% reported PsA; associated chronic diseases included depression (15%), hypertension (13%), obesity (9%), and type 2 diabetes mellitus (7%); patients reported a positive relationship with health system employers because of the confidentiality; dermatologists were considered the best source of information about therapies 65% reported moderate, severe, or very severe psoriasis; 18% received systemic medication and/or phototherapy; comorbidities (eg, obesity and hypertension) were highly prevalent (75% reporting $ 1); psoriasis negatively affected QOL (per SF-8 and DLQI) 19% with psoriasis had established or probable PsA and 8% had symptoms suggestive of PsA without ever having been diagnosed; 49.6% with PsA had $ 1 swollen joint, 84.9% had joint pain; average number of swollen joints was 6.8 per patient

MAY 2014

J AM ACAD DERMATOL

Telephone and e-mail survey assessed whether patients with moderate or severe psoriasis were being treated with systemic therapy

Horn et al, 2007 (NPF)

Key findings


Appendix A. Cont’d

457

Canada

Lynde et al, 2009 (SKIN Survey)A14

Telephone survey assessed the natural history of patients moderate to severe psoriasis, with or without diagnosed PsA or other recognized comorbid conditions, as well as factors affecting their daily lives

500

Canada

Tan et al, 2010A15

Online survey assessed decisional role, post-decisional conflict, and treatment awareness among patients with psoriasis

248

Canada

Kamangar et al, 2011A16

Mail, e-mail, and in-person interviews at single institution assessed patient attitudes toward biologics, the way patients use biologics, and potential barriers encountered

106

United States

Continued


95% had moderate to severe psoriasis; prevalence of medical and psychological comorbidities were reported up to 4-fold higher than Canadian background rates; reduced income and increased unemployment increased with psoriasis severity; biologics were associated with high levels of satisfaction vs other treatment options 54% had lesions affecting BSA equivalent to at least 3 lesions on the palms (3%); 35% considered psoriasis a substantial problem in their daily life; affected BSA and self-reported extent of skin involvement at the height of the condition correlated with the perception of psoriasis as a substantial problem; 18% were diagnosed with PsA, but 51% reported joint pain or stiffness, suggesting incipient or undiagnosed PsA Respondents said doctors lacked time to stay abreast of treatments (48%), provide counseling (41%), and access appropriate treatments (34%); most common deficiencies were information on options, clarification of values, access to physicians, and decisionmaking skills; those with BSA $ 3% more frequently indicated that having the skill or ability to make treatment decisions was important Most patients learn of biologics from their physician and perform follow-up research using the Internet; decision to start a biologic was not difficult for most patients; difficulty in obtaining biologics was associated with age \55 years, lower income level, and lack of insurance; biologics were associated with high satisfaction and compliance rates; mean annual out-of-pocket expense for a biologic was $557.12 (range, $0e7000)

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Online survey of psoriasis education program users assessed physical, mental, social, and financial burdens of psoriasis

VOLUME 70, NUMBER 5

Mahler et al, 2009 (Stand Up and Speak Out)A13

Author and date (survey name) A17


Sample size

Geography

163

Germany

Yazigi et al, 2011A18

Self-administered structured questionnaires assessed the impact of psoriasis on lifestyle, treatment patterns, and preference for biologic agents

687

Brazil

Hjortsberg et al, 2011A19

Patient survey and retrospective chart review assessed psoriasis treatment, level of satisfaction, reasons for dissatisfaction, and work impairment caused by psoriasis

273

Finland, Sweden

Anstey et al, 2012 (Abbott Survey)A20

Open access, Web-based survey assessed the effect of psoriasis on patients’ daily life

1760

United Kingdom

Most important attributes were treatment location, probability of benefit, and method of delivery, all of which were more important than treatment-related AEs; older patients (age $ 65 years) were less concerned about the probability of benefit vs younger patients; incorporating preferences in shared decision-making may facilitate treatment compliance and optimize outcome 77% said the disease worsens QOL; 51% avoided life activities because of psoriasis; 65% sought advice from $ 1 dermatologist to treat psoriasis; 68% were dissatisfied with drugs used for treatment; 68% said lack of improvement was the main cause of dissatisfaction 54% in Finland and 64% in Sweden used emollients and topical corticosteroids alone; 34% in Finland and 21% in Sweden used systemic treatment (not biologics); 4% in Finland and 6% in Sweden used biologics during the survey period; patients receiving emollients were least satisfied with treatment; patients receiving biologic treatment for # 12 months and [12 months were most satisfied; patients on systemic (not biologic) treatments were less satisfied than those on biologic treatment for # 12 months; estimated average output capacity at work/studies (work productivity) was 82% during last psoriasis outbreak 52% reported their psoriasis as ‘‘very’’ or ‘‘extremely’’ active; 71% were diagnosed [10 years previously; psoriasis negatively affected working life of 59% and educational performance of 31%

MAY 2014

J AM ACAD DERMATOL

Computer-based conjoint analysis designed to determine outcome preferences in patients with moderate to severe psoriasis at a single German center

Schaarschmidt et al, 2011

Key findings



Germany

Armstrong et al, 2012 (NPF: Comorbidities)A22

Combined data from 13 surveys (biannual waves conducted in 2003-2009 and 2011) of patients with psoriasis or PsA who were members of NPF to determine association between psoriasis severity (per BSA) and comorbid conditions

5211

United States

Armstrong et al, 2012 (NPF: QOL)A23

Combined data from 13 surveys (biannual waves conducted in 2003-2009 and 2011) of patients with psoriasis or PsA who were members of NPF to determine disease effects on QOL and work productivity

5604

United States

Van Cranenburgh et al, 2013A24

Web-based survey of 2 Dutch psoriasis patient associations assessed patient satisfaction with treatment and importance of specific domains of patient satisfaction and QOL

1293

The Netherlands

24% said their QOL was considerably impaired (DLQI [10) (vs 34% in 2005 and 28% in 2007); 49% received systemic therapies (vs 33% in 2005 and 47% in 2007); on average, respondents were absent from work for 8 days in the previous year because of psoriasis (vs 3.9 in 2005 and 4.0 days in 2007) Among 1982 participants with both psoriasis and PsA, 86.3% reported presenting with psoriasis before PsA; the prevalence of PsA was 27.9%, 31.4%, and 46.4% among those with mild, moderate, and severe psoriasis, respectively (P \ .0001); compared with patients with mild to moderate disease, patients with severe psoriasis had 1.5 times increased odds of having diabetes and heart disease [90% of respondents reported that psoriasis is a daily problem in their lives; [80% reported that psoriasis affects their overall emotional state and interferes with their enjoyment of life; 37.1% said that psoriasis or PsA was part of their identity; 20.3% said that psoriasis caused social embarrassment, and 16.6% said that psoriasis was physically painful; among respondents who were not working, 92% cited psoriasis and/or PsA as the sole reasons for not working; among respondents who were working, 49% reported missing work days because of psoriasis or PsA treatment; 62% missed # 5 days, 6.6% missed 6-10 days, and 31% missed [10 days Psoriasis patients were moderately satisfied with their treatment; least satisfied were patients receiving topical therapy; significantly, most satisfied were patients who received biologics; treatment effectiveness was rated overall as most important, followed by treatment safety and doctorepatient communication Continued


2449

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Interviews of patient organization members (Psoriasis-Bund e.V.) compared 2008 survey with previous surveys regarding medical history, therapies, HRQOL, and patient-defined treatment benefit

VOLUME 70, NUMBER 5

Langenbruch et al, 2012 (PsoReal)A21

Author and date (survey name)

Armstrong et al, 2013 (NPF)

Bhutani et al, 2013 (NPF)A26

Methods and objectives A25

Sample size

Geography

Combined data from 13 surveys (biannual waves conducted in 2003-2011) of patients with psoriasis or PsA who were members of NPF to determine whether patients are undertreated, trends in medication use, and patient satisfaction with treatment

5604

United States

Combined data from 13 surveys (biannual waves conducted in 2003-2009 and 2011) of patients with psoriasis or PsA who were members of NPF to examine relationship between psoriasis characteristics and access to care and out-of-pocket spending

5604

United States

Key findings

MAY 2014

AEs, Adverse events; BSA, body surface area; DLQI, Dermatology Life Quality Index; EUROPSO, European Psoriasis Association; HRQOL, health-related quality of life; MTX, methotrexate; NPF, National Psoriasis Foundation; PCP, primary care physician; PDI, psoriasis disability index; PsA, psoriatic arthritis; PUVA, psoralen plus ultraviolet A light phototherapy; QOL, quality of life; SF-8, 8-item Short Form questionnaire; SKIN, pSoriasis Knowledge IN Canada; UVB, ultraviolet B light.

J AM ACAD DERMATOL

37-49% of patients with mild psoriasis were receiving no treatment compared with 2436% with moderate psoriasis and 9-30% with severe psoriasis; z30% with moderate psoriasis and z20% with severe psoriasis receive topical medication alone; UVB remains the most preferred phototherapeutic modality; among systemic treatments, the proportion of MTX use is consistently greater than that for acitretin and cyclosporine; although etanercept was initially the most preferred biologic, adalimumab exceeded etanercept use in the 2011 survey; primary reasons for discontinuing a biologic in 2007 and 2008 were related to efficacy and AEs; 52% with psoriasis and 46% with PsA were dissatisfied with their treatment z91% with psoriasis and PsA were covered by some form of private or public health insurance; 92% with psoriasis had seen $ 1 physician in past 2 years, and female patients were more likely to see a physician for psoriasis; 8% of responders reported not receiving any medical care for their psoriasis; 78% receiving care were evaluated by either a dermatologist or a rheumatologist, and 22% were treated by PCPs; 21% listed high cost as the reason for not consulting with a specialist for care; responders spent an average of $2528/year out-of-pocket on their psoriasis care, despite the majority having health insurance




Sample size

477

NPF 2011 Survey—Panel Snapshot (www.psoriasis.org/document.doc? id=1782)A27

Telephone and online survey assessed patient-related factors, medical care, and treatments used in patients with psoriasis

EUROPSO II 2003 (http://www.psori. fi/fin/in_english/)A28

Mail survey to members of psoriasis organizations assessed effect of psoriasis on the QOL of European patients and patients’ perceptions of current treatments

7820

Psoriasis Uncovered 2011/IFPA Under the Spotlight (http://www. underthespotlight.com/aboutpsoriasis/psoriasis-uncovered2011.aspx)A29

International Internet and paper-based survey evaluated the effects of psoriasis on life activities and treatment satisfaction

[5000

Geography

Key findings

United States

Continued


62% had moderate to severe psoriasis, 40% had both psoriasis and PsA; 58% had psoriasis only, 2% had PsA only, and 40% had both; 13% had mild psoriasis (\3% BSA), 41% moderate (3-10% BSA), 18% severe ([10% BSA), and 21% very severe ([20% BSA); 22% had significant symptoms of PsA (joint pain and swelling); 29% with PsA received diagnosis $ 2 years after symptoms first experienced; 63% with PsA were unable to be as active as they used to be; 47% say PsA affected their ability to work 32% were diagnosed with PsA; moderate to severe Denmark, Iceland, disease impact on QOL based on PDI included Norway, Estonia, clothing choice (46%), wash/change clothes Slovakia, Sweden, (38%), more baths (37%), sports difficulties (26%), Spain, and United home messy/untidy (26%); 23% were not under Kingdom physician care; 46% were treated by a dermatologist, 40% by a family physician; treatments included vitamin D (22%), steroids (21%), coal tar (10%), MTX (6%), and PUVA (1%); only 33% were highly satisfied with treatment; reasons for treatment dissatisfaction included time-consuming (48%), lack of efficacy (29%), expensive (19%), and adverse effects (18%) 8 countries, including In moderate to severe psoriasis, 62% responded that having the disease had adversely affected their Europe, Mexico, and feelings of self-worth and 50% said psoriasis the United Arab reduced their self-confidence over time; 20% felt Emirates psoriasis put a strain on their relationships with their spouse/partner; 40% felt uncomfortable in intimate relationships because of their disease; 28% reported days when they were not productive at work because of psoriasis; 52% were treated by a dermatologist, 37% by a family practitioner; 5% had no medical care; 40% felt that their HCP was not as informed as they would like about the emotional impact of psoriasis; 55% were satisfied with their treatment of psoriasis

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Survey name and year (URL)

VOLUME 70, NUMBER 5

Appendix B. Other patient surveys in psoriasis

Survey name and year (URL)

Psoriasis Uncovered Australia 2010 (http://psoriasisaustralia.org.au/wpcontent/themes/vision/images/ Psoriasis_Uncovered_Survey_ Findings.pdf)A30


Quantitative survey assessed the impact that living with psoriasis has on people’s experiences and choices in life: emotionally, socially, and sexually

Know Your PASI Survey/Janssen and Online survey of patients recruited The Psoriasis Association from The Psoriasis Association (http://www.otjonline.com/news2011/ Web site, the Psoriasis Association 11/news01a.php)A31 Facebook page, @psoriasisUK, the Psoriasis360 Facebook page, and @psoriasis360 Burden of Psoriasis/LEO Pharma Quantitative online survey International Survey (http://multivu.prnewswire.com/mnr/ prne/leo-pharma/56611)A32

Sample size

Geography

363

Australia

667

United Kingdom

3822

Europe, United States, and Canada

Key findings

71% hid flare-ups most or all of the time; 82% hid their psoriasis because of embarrassment; 26% hid their psoriasis because they fear they will be judged, and 18% worry they will be discriminated against; 79% felt their psoriasis negatively affects their relationships; miss an average of 4.4 days of work per year because of psoriasis; 65% experienced pain and stiffness in joints Widespread dissatisfaction with psoriasis treatment; only 16% said they have had their disease severity measured; only 9% offered assessment regarding impact on QOL


Appendix B. Cont’d

73% scored their psoriasis as moderately or highly impacting their lives

BSA, Body surface area; HCP, health care provider; IFPA, International Federation of Psoriasis Associations; MTX, methotrexate; NPF, National Psoriasis Foundation; PDI, psoriasis disability index; PsA, psoriatic arthritis; PUVA, psoralen plus ultraviolet A light phototherapy; QOL, quality of life.

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REFERENCES A1. Farber EM, Bright RD, Nall ML. Psoriasis. A questionnaire survey of 2,144 patients. Arch Dermatol 1968;98:248-59. A2. Poyner TF, Fell PJ. A survey of patients with plaque psoriasis. J Dermatolog Treat 1995;6:199. A3. Krueger G, Koo J, Lebwohl M, Menter A, Stern RS, Rolstad T. The impact of psoriasis on quality of life: results of a 1998 National Psoriasis Foundation patient-membership survey. Arch Dermatol 2001;137:280-4. A4. Gelfand JM, Feldman SR, Stern RS, Thomas J, Rolstad T, Margolis DJ. Determinants of quality of life in patients with psoriasis: a study from the US population. J Am Acad Dermatol 2004;51:704-8. A5. Fouere S, Adjadj L, Pawin H. How patients experience psoriasis: results from a European survey. J Eur Acad Dermatol Venereol 2005;19(suppl 3):2-6. A6. Nakagawa H, Igarashi A, Etoh T, Ozawa A, Nemoto O. The results of a psoriasis patients’ satisfaction survey (second report): analysis of factors contributing to overall satisfaction [in Japanese]. Jpn J Dermatol 2005;115:1449-59. A7. Dubertret L, Mrowietz U, Ranki A, van de Kerkhof PC, Chimenti S, Lotti T, et al. European patient perspectives on the impact of psoriasis: the EUROPSO patient membership survey. Br J Dermatol 2006;155:729-36. A8. Nijsten T, Margolis DJ, Feldman SR, Rolstad T, Stern RS. Traditional systemic treatments have not fully met the needs of psoriasis patients: results from a national survey. J Am Acad Dermatol 2005;52(3 pt 1):434-44. A9. Horn EJ, Fox KM, Patel V, Chiou CF, Dann F, Lebwohl M. Are patients with psoriasis undertreated? Results of National Psoriasis Foundation survey. J Am Acad Dermatol 2007;57: 957-62. A10. Altobelli E, Maccarone M, Petrocelli R, Marziliano C, Giannetti A, Peris K, et al. Analysis of health care and actual needs of patients with psoriasis: a survey on the Italian population. BMC Public Health 2007;7:59. A11. Wasel N, Poulin Y, Andrew R, Chan D, Fraquelli E, Papp K. A Canadian self-administered online survey to evaluate the impact of moderate-to-severe psoriasis among patients. J Cutan Med Surg 2009;13:294-302. A12. Radtke MA, Reich K, Blome C, Rustenbach S, Augustin M. Prevalence and clinical features of psoriatic arthritis and joint complaints in 2009 patients with psoriasis: results of a German national survey. J Eur Acad Dermatol Venereol 2009;23:683-91. A13. Mahler R, Jackson C, Ijacu H. The burden of psoriasis and barriers to satisfactory care: results from a Canadian patient survey. J Cutan Med Surg 2009;13:283-93. A14. Lynde CW, Poulin Y, Guenther L, Jackson C. The burden of psoriasis in Canada: insights from the pSoriasis Knowledge IN Canada (SKIN) survey. J Cutan Med Surg 2009;13:235-52. A15. Tan J, Stacey D, Fung K, Barankin B, Bissonnette R, Gulliver W, et al. Treatment decision needs of psoriasis patients: crosssectional survey. J Cutan Med Surg 2010;14:233-9. A16. Kamangar F, Isip L, Bhutani T, Dennis M, Heller MM, Lee ES, et al. How psoriasis patients perceive, obtain, and use biologic agents: survey from an academic medical center. J Dermatolog Treat 2013;24:13-24. A17. Schaarschmidt ML, Schmieder A, Umar N, Terris D, Goebeler M, Goerdt S, et al. Patient preferences for psoriasis treatments: process characteristics can outweigh outcome attributes. Arch Dermatol 2011;147:1285-94.


A18. Yazigi Sabbag C, Prado Goncalves E. Brazilian survey with patients with psoriasis. Revista Latinoamericana de Psoriasis y Artritis Psoriasica 2011;3:7-14. A19. Hjortsberg C, Bergman A, Bjarnason A, Heikkila H, Hjelmgren J, Svensson A, et al. Are treatment satisfaction, quality of life, and self-assessed disease severity relevant parameters for patient registries? Experiences from Finnish and Swedish patients with psoriasis. Acta Derm Venereol 2011;91:409-14. A20. Anstey A, McAteer H, Kamath N, Percival F. Extending psychosocial assessment of patients with psoriasis in the UK, using a self-rated, web-based survey. Clin Exp Dermatol 2012;37:735-40. A21. Langenbruch AK, Radtke MA, Augustin M. Quality of psoriasis care from the patients’ perspective - results of the national health care study PsoReal. Eur J Dermatol 2012;22:518-24. A22. Armstrong AW, Schupp C, Bebo B. Psoriasis comorbidities: results from the National Psoriasis Foundation surveys 2003 to 2011. Dermatology 2012;225:121-6. A23. Armstrong AW, Schupp C, Wu J, Bebo B. Quality of life and work productivity impairment among psoriasis patients: findings from the National Psoriasis Foundation survey data 2003-2011. PLoS One 2012;7:e52935. A24. van Cranenburgh OD, de Korte J, Sprangers MA, de Rie MA, Smets EM. Psoriasis patients’ satisfaction with treatment: a web-based survey study. Br J Dermatol 2013;169:398-405. A25. Armstrong AW, Robertson AD, Wu J, Schupp C, Lebwohl MG. Undertreatment, treatment trends, and treatment dissatisfaction among patients with psoriasis and psoriatic arthritis in the United States: findings from the National Psoriasis Foundation surveys, 2003-2011. JAMA Dermatol 2013;149: 1180-5. A26. Bhutani T, Wong JW, Bebo BF, Armstrong AW. Access to health care in patients with psoriasis and psoriatic arthritis: data from national psoriasis foundation survey panels. JAMA Dermatol 2013;149:717-21. A27. National Psoriasis Foundation web site. 2011 survey panel snapshot. Available at: www.psoriasis.org/document.doc? id=1782. Accessed January 20, 2014. A28. The Finnish Psoriasis Association (Psoriasisliitto) web site. The EUROPSO psoriasis patient study: treatment history and satisfaction reported by 17,990 members of European psoriasis patient associations. Available at: http://www.psori.fi/ fin/in_english/. Accessed January 20, 2014. A29. International Federation of Psoriasis Association web site. Psoriasis uncovered 2011. Available at: http://www. underthespotlight.com/about-psoriasis/psoriasisuncovered-2011.aspx. Accessed January 20, 2014. A30. Psoriasis Australia web site. Psoriasis uncovered in Australia: results of a patient survey. Available at: http://psoriasisaustralia. org.au/wp-content/themes/vision/images/Psoriasis_Uncove red_Survey_Findings.pdf. Accessed January 20, 2014. A31. The Operating Theatre Journal web site. National survey results from The Psoriasis Association reveal widespread inconsistencies in the care and management of people with psoriasis. Available at: http://www.otjonline.com/news2011/ 11/news01a.php. Accessed January 20, 2014. A32. PR Newswire web site. International study highlights need to support patients with psoriasis suffering feelings of isolation, stigmatisation and anxiety. Available at: http://multivu. prnewswire.com/mnr/prne/leo-pharma/56611/. Accessed January 20, 2014.

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Appendix C. The Multinational Assessment of Psoriasis and Psoriatic Arthritis Survey Abt SRBI Inc. Seventh Avenue NEW YORK, NEW YORK 10001 STUDY NUMBER 5454 REVISED: June 29 Global Psoriatic Survey: Patients ________________________________________________________________________________________________________ HOUSEHOLD SCREEN FOR PERSONS WITH PSORIASIS AND PSORIATIC ARTHRITIS Hello, I’m _____________ from Abt SRBI, the national research organization. We are conducting one of the largest surveys of PSORIASIS and PSORIATIC ARTHRITIS to increase attention to the burden of these diseases. I have a couple of questions which will help us understand how many people in the country are affected by PSORIASIS AND PSORIATIC ARTHRITIS. (IF ASKED: You can learn more about us at our website, srbi.com.) FOR CELL PHONE LIST SAMPLE SURVEY ONLY (5454NC): CA1. If we have reached you on a cell phone, are you in a safe place to IF DRIVING VOLUNTEERED, CODE AS 2 1 Yes, safe place to talk 2 No, call me later 3 No, CB on land-line 4 (VOL) on landline 8 Don’t know 9 Refused FOR CELL PHONE LIST SAMPLE SURVEY ONLY (5454NC): CA2. Are you driving? 1 Yes, call me later 2 No 8 Don’t know 9 Refused

talk right now?

SCHEDULE CALLBACK RECORD NUMBER, SCHEDULE CALLBACK SKIP TO QA

SCHEDULE CALLBACK

A. Including yourself how many persons, aged 18 and older, live in this household (even if not there right now)? ______ NUMBER OF PERSONS RANGE 0-10 0 None SCREEN OUT 98 (VOL) Don’t Know SCREEN OUT 99 (VOL) Refused THANK AND END B. Have any of these persons EVER been diagnosed as having psoriasis or psoriatic arthritis? 1 Yes, diagnosed with psoriasis or psoriatic arthritis 2 No, never diagnosed 8 (VOL) Don’t Know 9 (VOL) Refused

QUAL=1 SCREEN OUT SCREEN OUT THANK AND END

C. How many persons, 18 or older, in this household have been diagnosed with psoriasis or psoriatic arthritis? ________ NUMBER OF PERSONS RANGE 0-10 0 None SCREEN OUT 98 (VOL) Don’t Know SCREEN OUT 99 (VOL) Refused THANK AND END E1 and E2 to loop up to 6 times - Number of loops based on QC E1. (What is the age/What are the ages) of the person(s) who have been diagnosed with psoriasis or psoriatic arthritis? E2. What is the gender of that person? 1 Male 2 Female 8 (VOL) Don’t Know 9 (VOL) Refused



IF NO ONE OVER 18 YEARS OF AGE IN E1, SCREEN OUT. IF MORE THAN ONE ELIGIBLE AGE (18 or older_) IN E, THEN PROGRAM SELECTS DESIGNATED RESPONDENT FOR THE SURVEY. PAGE: Holds Selected Patient AGE PSEX: Holds Selected Patient Sex F. I have some questions that I would like to ask persons who have been diagnosed with psoriasis or psoriatic arthritis about the condition and its treatment. Could I speak to the (AGE year old GENDER) who has been diagnosed with psoriasis or psoriatic arthritis? 1 Respondent is the person......................GO TO G2 2 Respondent is not available 3 New Respondent comes to phone.........GO TO G1 9 Refused.................................................THANK AND END F1. May I please have the first name of the (AGE year old GENDER)? 1 Gave Response SET CALLBACK 8 (VOL) Don’t Know SET CALLBACK 9 (VOL) Refused THANK AND END G. INTRODUCTION TO PATIENT G1. Hello, I’m__________ from Abt SRBI, the national research organization. We are conducting one of the largest surveys of psoriasis and psoriatic arthritis to increase attention to the burden of these diseases. We believe that the findings of the survey will be very important to persons with psoriasis, their families, and the doctors who treat them. G2. These questions will take about twenty minutes. It is completely voluntary. You don’t have to answer any questions that you don’t want to answer. But your participation will help us to complete one of the largest and most important surveys about psoriasis in this country. Could we begin now? 1 Yes .........................SKIP TO S1a 2 No ...............................OFFER TO RESCHEDULE AT A BETTER TIME 3 Callback ..................THANK AND SCHEDULE 9 Refused .......................THANK AND END [IF ASKED: Your identity and individual responses will be kept strictly confidential. Neither your phone number nor any other personal information will be associated with your answers or disclosed to anyone outside of SRBI. Responses will be presented in aggregate form only.] [IF ASKED: The sponsor is a research based pharmaceutical company.] INDIVIDUAL SCREENER S1a. Has a doctor EVER DIAGNOSED you as having psoriasis or psoriatic arthritis or both? 1 Yes, psoriasis 2 Yes, psoriatic arthritis 3 Yes, both 4 No, neither SKIP TO S2 (IF QA[1) 8 (VOL) Don’t Know SCREEN OUT 9 (VOL) Refused THANK AND END S1b. Do you STILL HAVE ....? ONLY SHOW RESPONSE FROM S1a 1 Yes, psoriasis 2 Yes, psoriatic arthritis 3 Yes, both 4 No, neither 8 (VOL) Don’t Know 9 (VOL) Refused S1c. Has your diagnosis changed, are your symptoms in remission, or something else? 1 Diagnosis changed IF QA[1, GO TO S2; OTHERWISE SCREEN OUT 2 Symptoms in remission SKIP TO Q1 3 Something else (SPECIFY) RECORD OTHER SPECIFY, SKIP TO Q1 8 (VOL) Don’t Know IF QA[1, GO TO S2; OTHERWISE SCREEN OUT 9 (VOL) Refused THANK AND END

QUAL=4, SKIP TO Q1 QUAL=4, SKIP TO Q1 QUAL=4, SKIP TO Q1


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S2. Is there any other adult in the household who suffers from psoriasis or psoriatic arthritis? 1 Yes RESELECT R FROM E1 AND E2/LOOP BACK TO G1 2 No THANK AND END 8 (VOL) Don’t Know SCREEN OUT 9 (VOL) Refused THANK AND END PSOTXT=Holds condition R currently has from S1b or S1a MAIN QUESTIONNAIRE 1. Aside from (psoriasis/psoriatic arthritis USE READ-IN FROM PSOTXT), do you suffer from .....? READ LIST AND MULTIPLE RECORD 1 Arthritis 2 Cancer 3 Crohn’s disease 4 Diabetes 5 Depression 6 High blood pressure or hypertension 7 Heart disease 8 Liver disease 9 Ulcerative colitis 10 Uveitis 11 Something else (Specify) 12 None of these 98 (VOL) Don’t Know 99 (VOL) Refused QUAL=5 IF PSORIATIC ARTHRITIS ONLY (PSOTXT=2), SKIP TO Q6b 2. At what age did you first develop SKIN SYMPTOMS of psoriasis? _______ AGE AT ONSET RANGE: 0-97 0 = Less than 1 year old 98 (VOL) Don’t Know 99 (VOL) Refused IF BOTH PsO AND PSA (PSOTXT=3) ASK Q3, ELSE SKIP TO Q5 3. Did skin lesions appear BEFORE your joint symptoms, or did the joint symptoms appear first? 1 Skin lesions first 2 Joint symptoms first 3 About the same time SKIP TO Q5 8 (VOL) Don’t Know SKIP TO Q5 9 (VOL) Refused SKIP TO Q5 4. How long did (skin lesions/joint symptoms) appear before the (skin lesions/joint symptoms)? ______ years RANGE: 0-97 0 = Less than one year 98 (VOL) Don’t Know 99 (VOL) Refused 5. At what AGE were you first diagnosed with psoriasis? _______ AGE AT DIAGNOSIS RANGE: 0-97 0=Less than 1 year old 98 (VOL) Don’t Know 99 (VOL) Refused IF PSOTXT=3, ASK Q6a. IF PSOTXT=2, SKIP TO Q6b, ELSE SKIP TO Q7a 6a. Were you DIAGNOSED with psoriatic arthritis at the same time that you were diagnosed with psoriasis? 1 Yes, diagnosed at the same time SKIP TO Q7a 2 No, diagnosed at different times 8 (VOL) Don’t Know 9 (VOL) Refused

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VOLUME 70, NUMBER 5

6b. At what age were you first DIAGNOSED with psoriatic arthritis? _______ AGE AT DIAGNOSIS RANGE: 0-97 0=Less than 1 year old 98 (VOL) Don’t Know 99 (VOL) Refused TIMER MARK 2 ASK ALL 7a. Do you currently have any of the following READ LIST AND MULTIPLE RECORD. 1 Redness 2 Scales 3 Flaking 4 Itching 5 Pain 6 Bleeding 7 Burning 8 Other skin symptoms (specify) 9 None of these 98 (VOL) Don’t Know 99 (VOL) Refused

SKIN SYMPTOMS .....

SKIP TO Q8 SKIP TO Q8 SKIP TO Q8

IF ONLY ONE MENTION (1-8) IN Q7a, AUTOCODE Q7b (Q7b=Q7a) and SKIP TO Q7d IF TWO MENTIONS (1=8) IN Q7a, ASK Q7b, THEN AUTOCODE Q7c 7b. What is the most bothersome of your SKIN SYMPTOMS..... READ ONLY WHAT WAS SELECTED IN Q7a AND MULTIPLE RECORD 1 Redness 2 Scales 3 Flaking 4 Itching 5 Pain 6 Bleeding 7 Burning 8 Other skin symptoms (specify) 98 (VOL) Don’t Know SKIP TO Q7d 99 (VOL) Refused SKIP TO Q7d 7c. What is the second most bothersome of your SKIN SYMPTOMS..... READ ONLY WHAT WAS SELECTED IN Q7a AND MULTIPLE RECORD 1 Redness 2 Scales 3 Flaking 4 Itching 5 Pain 6 Bleeding 7 Burning 8 Other skin symptoms (specify) 98 (VOL) Don’t Know 99 (VOL) Refused 7d. Where do you currently have these skin symptoms? READ LIST AND MULTIPLE RECORD. 1 Face 2 Palms 3 Nails 4 Soles 5 Scalp 6 Genitals 7 Trunk


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8 Elbows 9 Knees 10 Other (Specify) 11 None of these 98 (VOL) Don’t Know 99 (VOL) Refused 8. Have you been diagnosed with chronic plaque psoriasis? 1 Yes 2 No 8 (VOL) Don’t Know 9 (VOL) Refused 9a. Do you have pain or soreness in any of your joints? 1 Yes 2 No SKIP TO Q10 8 (VOL) Don’t Know SKIP TO Q10 9 (VOL) Refused SKIP TO Q10 9b. How many joints are affected? 1 One 2 Two 3 Three 4 Four 5 More than four 8 (VOL) Don’t Know 9 (VOL) Refused 9c. Where (body location) is the joint pain (or soreness) most bothersome? DO NOT READ LIST. MULTIPLE RECORD. 1 Neck 2 Shoulders 3 Elbow 4 Wrist 5 Fingers 6 Hips 7 Knees 8 Ankles 9 Toes 10 Back/Spine 11 Heel 12 Other (specify) 98 (VOL) Don’t Know 99 (VOL) Refused Q9d ‘‘Do you have ‘sausage’ digits (pain or swelling of an entire finger[s])?’’ 1 Yes 2 No 8 (VOL) Don’t Know 9 (VOL) Refused Q9e ‘‘Do you have pain or swelling of the heel?’’ 1 Yes 2 No 8 (VOL) Don’t Know 9 (VOL) Refused ASK FOR PsO patients (PSOTXT=1 OR PSOTXT=3) OR PsA patients who currently experience skin symptoms [Q7a

US Perspectives in the Management of Psoriasis and Psoriatic Arthritis: Patient and Physician Results from the Population-Based Multinational Assessment of Psoriasis and Psoriatic Arthritis (MAPP) Survey.

Physician perspectives in the management of psoriasis and psoriatic arthritis: results from the population-based Multinational Assessment of Psoriasis and Psoriatic Arthritis survey.

A European subset analysis from the population-based Multinational Assessment of Psoriasis and Psoriatic Arthritis shows country-specific features: results from psoriasis patients in Spain.

Psoriasis and Psoriatic Arthritis.

Psoriatic arthritis in severe psoriasis.

Psoriasis, Psoriatic Arthritis, and Thyroid Autoimmunity.

Which Psoriasis Patients Develop Psoriatic Arthritis?

Psoriasis, psoriatic arthritis and the possible association with Sjögren's syndrome.

Screening for Psoriatic Arthritis in Korean Psoriasis Patients Using the Psoriatic Arthritis Screening Evaluation Questionnaire.

Treatment of psoriasis and psoriatic arthritis with interferon gamma.

[Disease burden of psoriasis associated with psoriatic arthritis in Hungary].

Th17 and Th22 cells in psoriatic arthritis and psoriasis.

Treatment of psoriasis and psoriatic arthritis during pregnancy and breastfeeding.

Patient satisfaction and quality of life in psoriasis and psoriatic arthritis.

Antinuclear antibodies in ankylosing spondylitis, psoriatic arthritis, and psoriasis.

T cell responses in psoriasis and psoriatic arthritis.

Patient participation in psoriasis and psoriatic arthritis outcome research: a report from the GRAPPA 2013 Annual Meeting.

Screening for psoriatic arthritis in people with psoriasis.

The role of p38 MAPK in the aetiopathogenesis of psoriasis and psoriatic arthritis.

Etanercept for psoriasis and psoriatic arthritis in a patient with Charcot-Marie-Tooth disease.

Psoriasis beyond the skin: an expert group consensus on the management of psoriatic arthritis and common co-morbidities in patients with moderate-to-severe psoriasis.

Cross-phenotype association mapping of the MHC identifies genetic variants that differentiate psoriatic arthritis from psoriasis.

Long term efficacy and safety of etanercept in the treatment of psoriasis and psoriatic arthritis.

Risk of Serious Infection With Biologic and Systemic Treatment of Psoriasis: Results From the Psoriasis Longitudinal Assessment and Registry (PSOLAR).