1. EUROPSO patient survey First top-line results September 19th 2002

2. Survey Demographics

3. Survey response rate CountryMailedRepliesResponse rate (%) Belgium200086443,2 Czech Rep100043743,7 Finland14000559440 France7500255134 Germany9000375341,7 Italy11000260523,7 Netherlands6000258243 Total505001838636,4%

4. Response rate by age group Vlaanderen

5. Race and gender 99% caucasian Vlaanderen

6. Weight of respondents Vlaanderen

7. Psoriasis

8. Respondents with psoriasis 556 respondents had psoriasis Vlaanderen

9. Leeftijd van Diagnose Op welke leeftijd werd voor de eerste maal psoriasis waargenomen? Gemiddelde leeftijd Europa 30.5 jaren (n=17990)

10. Duur van Psoriasis Hoeveel jaren duurt de psoriasis op dit moment?

11. Type of psoriasis cf: US study,Krueger et al 2001: 88% psoriasis vulgaris Vlaanderen

12. Psoriasis symptoms cf: US study,Krueger et al 2001: 94% scaling, 79% itching, erythema 71%, burning 21%, bleeding 29%, fatigue 19% Vlaanderen

13. Sites affected Vlaanderen

14. Severity Body surface covered cf: US study,Krueger et al 2001: 39% severe Vlaanderen

15. Co-morbidities Have you been diagnosed with any of the following? Most co-morbidities appear age-related: obesity, diabetes, CVD. Those not obviously appearing to be age-related are autoimmune, Crohn’s, lupus Vlaanderen

16. Co-morbidities Severe Patients Vlaanderen

17. Psoriatic arthritis

18. Joint pain/stiffness Have you developed persistent joint pain or stiffness lasting more than 3 months? Vlaanderen

19. Joint pain/stiffness If yes, where? Vlaanderen

20. Psoriatic arthritis Have you been diagnosed with psoriatic arthritis by a physician? cf: US study,Krueger et al 2001: 31% diagnosed with PsA Vlaanderen

21. Impact of psoriasis

22. Psoriasis Disability Index (PDI) Total mean PDI = 10.8 (max score 48) Vlaanderen

23. PDI per country: Mean PDI score Max score = 48

24. PDI per age group: Mean PDI score Max score = 48 Vlaanderen

25. Total mean PDI = 8.9 Psoriasis Disability Index (PDI): Mild psoriasis PDI max score per category = 18 + 9 + 6 + 12 + 3

26. Overall PDI % score in mild psoriasis = 18.5% Psoriasis Disability Index (PDI): Mild psoriasis

27. Total mean PDI = 14 Psoriasis Disability Index (PDI): Moderate psoriasis PDI max score per category = 18 + 9 + 6 + 12 + 3

28. Psoriasis Disability Index (PDI): Moderate psoriasis Overall PDI % score in moderate psoriasis = 29.2%

29. Total mean PDI = 21 Psoriasis Disability Index (PDI): Severe psoriasis PDI max score per category = 18 + 9 + 6 + 12 + 3

30. Psoriasis Disability Index (PDI): Severe psoriasis Overall PDI % score in severe psoriasis = 43.8%

31. Impact of psoriasis PDI – individual questions

32. How much have you neglected your home’s outdoor and indoor work due to your psoriasis? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

33. Has your psoriasis affected your choice of clothes (e.g. colour or type)? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

34. Have you had to change or wash your clothes more often due to psoriasis? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

35. Has your psoriasis caused you problems at the hairdressers or barbers? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

36. Has your psoriasis resulted in you having to take more baths than usual? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

37. How much has your psoriasis made you take time off work or school or from carrying on your daily activities? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

38. How much has your psoriasis prevented you from doing things at work or school or altered the way you carry out your daily activities? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

39. Has your career been affected by your psoriasis? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

40. Has your psoriasis resulted in sexual difficulties? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

41. Has your psoriasis created problems with your partners or any of your close friends or relatives? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

42. Has your psoriasis stopped you from going out socially or to any special events? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

43. Has your psoriasis had a negative effect on exercising or going in for sports events, competing? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

44. Have you been unable to use or stopped from using the gym, locker room, swimming pool or dressing room in a store due to your psoriasis Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

45. Has your psoriasis resulted in you smoking or drinking alcohol more than you would do normally? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

46. To what extent has your psoriasis or its treatment made your home messy or untidy? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

47. How much did any physical discomfort due to psoriasis cause you to lose sleep or sleep badly? Percentage responding “Very much/A lot” PDI Individual questions Vlaanderen

48. Overall impact (scale 1 to 10)

49. Overall impact How much of a problem is your psoriasis/psoriatic arthritis on a scale of 1 to 10 (1=no problem, 10=large problem)? Mean score = 4.86 Vlaanderen

50. Overall impact: Mild psoriasis How much of a problem is your psoriasis/psoriatic arthritis on a scale of 1 to 10 (1=no problem, 10=large problem)? Mean score = 3.99 Vlaanderen

51. Overall impact: Moderate psoriasis How much of a problem is your psoriasis/psoriatic arthritis on a scale of 1 to 10 (1=no problem, 10=large problem)? Mean score = 5.31 Vlaanderen

52. Overall impact: Severe psoriasis How much of a problem is your psoriasis/psoriatic arthritis on a scale of 1 to 10 (1=no problem, 10=large problem)? Mean score = 6.71 Vlaanderen

53. Overall impact How much of a problem is your psoriasis/psoriatic arthritis on a scale of 1 to 10 (1=no problem, 10=large problem)?

54. Impact van Psoriasis Hoeveel vormt psoriasis/psoriatic arthritis een probleem op een schaal van 1 tot 10 (1=geen problem, 10=zeer groot problem)?

55. Psoriasis treatment

56. Action as a result of psoriasis Which of the following have you done concerning your psoriasis/psoriatic arthritis? Vlaanderen

57. Consultations How many doctors have you seen about your psoriasis/psoriatic arthritis in the last 2 years? Mean score = 1.8 Vlaanderen

58. Current healthcare professional Who are you currently seeing for your psoriasis/psoriatic arthritis? Vlaanderen

59. Current healthcare professional: Psoriatic arthritis Who are you currently seeing for your psoriatic arthritis? Vlaanderen

60. Information sources: psoriasis Where would you prefer to get information on your condition? Vlaanderen

61. Information sources: Psoriatic arthritis Where would you prefer to get information on your condition? Vlaanderen

62. Psoriasis Treatments

63. Psoriasis treatments Vlaanderen

64. Psoriasis treatment: Ever tried Alternative therapies Vlaanderen

65. Psoriasis treatment: Ever tried Photo therapies: all patients Vlaanderen

66. Psoriasis treatment: Ever tried Prescription medicines: all patients Vlaanderen

67. Psoriasis treatment: Ever tried Others: all patients Vlaanderen

68. Psoriasis Treatment: Satisfaction:

69. Acitretin: satisfaction (n = 98 ) Vlaanderen

70. Calcipotriene: satisfaction (n = 374) Vlaanderen

71. Coal tar: satisfaction (n = 216) Vlaanderen

72. Ciclosporine: satisfaction (n = 50) Vlaanderen

73. Fumarates: satisfaction (n = 51) Vlaanderen

74. Gold: satisfaction (n = 22) Vlaanderen

75. Methotrexate: satisfaction (n = 49) Vlaanderen

76. Topical steroids: satisfaction (n = 351) Vlaanderen

77. PUVA: satisfaction (n = 324) Vlaanderen

78. UVB: satisfaction (n = 131) Vlaanderen

79. Psoriasis Treatment: Patient satisfaction

80. How satisfied are you with how your doctor listens to your needs and concerns? (n=529) Vlaanderen

81. Patient satisfaction How satisfied are you with the information your doctor gives you on the disease? (n=522) Vlaanderen

82. Patient satisfaction How satisfied are you with your doctor overall? (n=516) Vlaanderen

83. Patient satisfaction How satisfied have you been concerning the treatment for your psoriasis? (n=507) Vlaanderen

84. Patient satisfaction: mild How satisfied have you been concerning the treatment for your psoriasis? (n=191) Vlaanderen

85. Patient satisfaction: moderate How satisfied have you been concerning the treatment for your psoriasis? (n=228) Vlaanderen

86. Patient satisfaction: severe How satisfied have you been concerning the treatment for your psoriasis? (n=78) Vlaanderen

87. Patient satisfaction How satisfied have you been concerning the treatment for your psoriatic arthritis? (n=157) Vlaanderen

88. Patient satisfaction What bothers you most about psoriasis treatment? (n=497) Vlaanderen

89. Patient satisfaction: mild What bothers you most about psoriasis treatment? (n=167) Vlaanderen

90. Patient satisfaction: moderate What bothers you most about psoriasis treatment? (n=207) Vlaanderen

91. Patient satisfaction: severe What bothers you most about psoriasis treatment? (n=72) Vlaanderen

92. Patient Associations

93. Patient associations How did you become aware of your patient association? (n=572) Vlaanderen

94. How did you become aware of your patient association? Doctor

95. How did you become aware of your patient association? Media

96. How did you become aware of your patient association? Friends/relatives

97. How did you become aware of your patient association? Internet

98. Patient associations Which of the following is most important? (n=551) Vlaanderen

99. How important are the following services? Newsletters (n=572) Vlaanderen

100. Website (n=572) How important are the following services? Vlaanderen

101. Local/regional meetings (n=572) How important are the following services? Vlaanderen

102. Booklets (n=572) How important are the following services? Vlaanderen

103. Support groups (n=572) How important are the following services? Vlaanderen

104. Support of psoriasis research towards a cure (n=572) How important are the following services? Vlaanderen

105. Availability of national staff to assist with issues (n=572) How important are the following services? Vlaanderen

106. Advocacy with govt, health authorities, insurance co, pharmaceutical industry (n=572) How important are the following services? Vlaanderen

107. Increasing general public awareness of the disease (n=572) How important are the following services? Vlaanderen

108. Patient associations If offered, which of the following would you be most likely to participate in or attend? (n=424)