Brazil Editors: LEO Innovation Lab and The Happiness Research Institute Copenhagen, Denmark, October 2018

Transcription

1 Editors: LEO Innovation Lab and The Happiness Research Institute Copenhagen,, October 2018

2 LEO Innovation Lab in cooperation with The Happiness Research Institute, All rights reserved. Any part of this report can be reproduced only with the explicit acknowledgement of the copyright owner. The following reference should be included: LEO Innovation Lab, The Happiness Research Institute (2018), World Psoriasis Happiness Report Available at

3 Contents General Data & Happiness Results General Data & Distributions Happiness & Well-being Stress & Loneliness Psoriasis & Comorbidities Productivity & Work Life Cost of Psoriasis Productivity Missed Work & Social Hours Impact of Symptoms on Work Life Support at Work Healthcare Professionals Healthcare Professional Type & Frequency of Visits Diagnosis & Type of Treatment Levels of Satisfaction with Healthcare Professionals Perceived Quality of the Interaction with Healthcare Professionals Healthcare Professional Relationship Appendix

4 General Data & Happiness Results General Data & Distributions. Total sample size: 12,059 Gender distribution Age distribution Male 4 (5,032) Other (509) 2 (2,726) 25% (3,014) 17% (2,097) 19% (2,271) Female 5 (6,319) (1,344) (384 ) Severity distribution 1% (15) 1% (72) Severe (754) Mild 4 (2,752) Age Severity distribution (N = 6,590) Global (N = 54,438) Mild 4 37% Moderate 47% (3,084) Moderate 47% 47% Severe 16% In, the majority of (roughly 9 out of 10) deem their psoriasis to be either mild or moderate, with slightly more in the latter group. The remaining 1 in 10 report severe psoriasis (subjective, self-perceived severity). Of the countries in the analysis, is among the five with the largest amount of people reporting mild psoriasis. Similarly, also falls into the group of countries with the smallest proportion of people reporting severe psoriasis (see Fig. A.1 in the Appendix), at of. Once again, it is important to emphasize that this severity measure is subjective and self-perceived 1. 1 The target population of PsoHappy is people living with self-reported psoriasis, meaning that the do not necessarily have the diagnosis confirmed by a dermatologist. For this reason, the findings of this report can t be cited or referred to as if they were based on a clinical diagnosis confirmed by healthcare specialists. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 4

5 GENERAL DATA & HAPPINESS RESULTS Happiness & Well-being Happiness level: 6.1 Happiness ranking: 4th / 21 Happiness Global Happiness level Happiness gap Happiness level Happiness gap Overall % % Gender - female % - male % Severity - mild % - moderate % % - severe % % The average happiness level of 6.1 places as 4th in the happiness ranking of the 21 countries in the analysis. With a happiness gap of -8%, is also in the top proportion of countries when ranked by happiness gap, meaning they have among the smallest gaps in happiness between those living with (selfperceived) psoriasis and the general population (see Fig. A.3 in the Appendix). less happy and experience extremely large happiness gaps, once again in line with the results for most other countries and the global picture. Stress & Loneliness As seen from Fig. D.1 and D.2 in the Appendix, the percentages of people in who are stressed and lonely are 2 : Some of the things that stand out in the table above are that: High stress: 68.7% Loneliness: 33. Women with self-perceived psoriasis in are less happy than their male counterparts, which is the same pattern seen in most of the other countries and on a global scale. This places among the countries with the largest proportion of stressed people, and it also ranks poorly when it comes to loneliness. The happiness level drops significantly with the selfperceived severity of psoriasis. Thus, people reporting more severe degrees of psoriasis are significantly 2 See Appendix Fig. D.1 and Fig. D.2 for methodology and calculation used to determine high stress and loneliness. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 5

6 GENERAL DATA & HAPPINESS RESULTS Psoriasis and Comorbidities We have analysed a variety of comorbidities reported by people living with self-perceived psoriasis and their effect on people s happiness and well-being. The graphs below show the overall distribution of comorbidities as well as detailed by gender and self-perceived psoriasis severity. Numbers and results for the global picture of all countries considered are included for reference and comparison. - Comorbidities N = 770 None of the above Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases Cancer -9% % -19% -16% -17% -2-18% -16% -18% -6% Average happiness gap 3 (251) 29% (226) 2 (157) 2 (153) (84) 1 (74) (25) 5% (37) (28) (24) (18) 1% (4) Global - Comorbidities N=10,828 None of the below Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases -8% -29% -26% -2-27% % % 26% 19% 1 1 5% Kidney diseases Liver diseases Cancer -19% -25% -18% Average happiness gap WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 6

7 GENERAL DATA & HAPPINESS RESULTS - Comorbidities by gender - Female N = 604 None of the above Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases -9% -21% -2-18% -17% -1-17% -19% -21% -1-21% Average happiness gap 3 (191) 3 (198) 2 (118) 19% (117) (68) 9% (52) (19) (25) (24) (19) (13) Global - Comorbidities by gender - Female N = 8,398 None of the below Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases Cancer -9% -29% -28% -26% -28% -28% -2-17% % -2 18% 1 1 5% 27% 3 31% Average happiness gap WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 7

8 GENERAL DATA & HAPPINESS RESULTS - Comorbidities by gender - Male N = 164 None of the above Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases -8% -27% -1-19% -29% % - -25% -1 36% (59) 17% (28) 2 (39) 21% (35) 9% (15) 1 (22) (6) 7% (12) (4) (5) (5) Average happiness gap Global - Comorbidities by gender - Male N = 2,369 None of the below Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases Cancer - -25% 18% -16% 2-16% 2-25% 9% % 6% -2-19% 5% % Average happiness gap WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 8

9 GENERAL DATA & HAPPINESS RESULTS - Comorbidities by severity None of the above 1% Depression or other mental disorders -1 Psoriatic arthritis - High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases -1-6% -8% MILD N = 206-7% -1-5% -15% 41% (85) 2 (49) 9% (18) 18% (37) 9% (18) 9% (18) (1) 5% (11) (6) (6) 1% (3) -19% MODERATE N = % -15% -21% -1-21% -28% % 3 (129) 3 (120) 19% (78) 21% (83) 1 (42) 8% (31) (11) 5% (21) (14) (11) (10) -28% -36% % -3-27% -28% -38% -38% SEVERE N = (37) 35% (56) 37% (59) 2 (32) 1 (23) 15% (24) 5% (8) (5) 5% (8) (7) -4 (5) Average happiness gap Average happiness gap Average happiness gap (Note that the sample sizes in Czech Republic are too small and insufficient for men, mild and severe psoriasis, as well as for certain comorbidities in general.) Global - Comorbidities by severity None of the below Depression or other mental disorders Psoriatic arthritis High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes Heart and vascular diseases Other Lung diseases Kidney diseases Liver diseases Cancer -17% % % -5% -1 MILD N= 2, % 8% 5% 7% MODERATE N= 5,962-9% -26% -21% -19% % -21% -19% -2-21% -2 35% 28% 2 18% 1 1 SEVERE N= 2,560-21% -4-36% -41% -39% -39% -4-36% -39% -27% -35% -28% % 15% 7% Average happiness gap Average happiness gap Average happiness gap WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 9

10 GENERAL DATA & HAPPINESS RESULTS Looking at the first figure with comorbidities and happiness gaps for people living with self-perceived psoriasis in, we see that: A third (3) of the don t experience any of the listed comorbidities. The happiness gap of people in this group is also much smaller than the happiness gaps of people reporting any of the other comorbidities 3. The most common comorbidity is depression or other mental disorders, experienced by as many as almost 3 in 10 (29%). This is followed by psoriatic arthritis and high blood pressure, both experienced by 1 in 5 (2) of the ian. Almost all of the comorbidities are related to very large happiness gaps, topped, among others, by depression or other mental disorders, psoriatic arthritis, and other joint diseases. Diving into the split by gender, we note that: For women, the comorbidities related to the largest happiness gaps are depression and other mental disorders, psoriatic arthritis, and lung and liver diseases. For men, it s by far depression and other mental disorders, as well as joint diseases other than psoriatic arthritis. Moving on to the split by severity in the bottom graphs, we see that: A much larger proportion of people with moderate and severe (self-perceived) psoriasis experience comorbidities. 59% with mild self-perceived psoriasis reportedly have one or more comorbidities (as 41% report none of the above ). Compare this to more than 2 in 3 (68%) with moderate psoriasis who experience comorbidities, and as many as more than 3 in 4 (77%) for severe psoriasis. Across all of the comorbidities, the happiness gaps drop significantly the worse the degree of psoriasis is. Depression and other mental disorders are much more common comorbidities among women than men, with 3 experiencing it compared to 17% for men. For men, psoriatic arthritis is the most common comorbidity, suffered by almost 1 in 4 (2). 1 in 5 (2) women experience this comorbidity, and it s interesting to see that they suffer from a much larger happiness gap than men (-2 vs. -1). 3 It is important to stress the fact that we cannot make any claims of causality in regards to comorbidities and happiness gaps; it s not necessarily one or more particular comorbidities that cause the given happiness gap. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 10

11 Productivity & Work Life WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 11

12 PRODUCTIVITY & WORK LIFE Cost of Psoriasis In, the estimated cost to society from lost productivity is as follows: Total cost on society Overall $3,413m Per 100,000 people in employment $3.8m As GDP 0. For reference, the general results for all countries from the World Psoriasis Happiness Report 2018 are shown in Table B.6 in the Appendix. From this we see that ranks somewhere in the middle in terms of the total cost as a percentage of GDP. However, 0. of GDP, corresponding to a total cost of $3,413 million is still a significant amount of money. Productivity Levels The table below shows presenteeism productivity at work (level of productivity reported on a scale from 0-100, 0 being not at all productive and 100 being totally productive, when they should have stayed at home because of their psoriasis and, respectively, other health issues). Productivity at work Global Average productivity - Because of psoriasis 45 (172) 53 (2,721) - Because of other health issues 55 (166) 63 (2,633) Percentage of people reporting less than 5 productivity - Because of psoriasis 65% (111) 51% (1,521) - Because of other health issues 5 (86) 41% (1,009) (For the average productivity results in the top half of the table, the numbers in parentheses show the total sample size for the scenario in the particular table cell. For the results in the bottom half of the table, the numbers in parentheses show the number of corresponding to the particular percentage.) As can be seen from the table, the in work at a lower productivity level when they should have stayed at home because of their psoriasis compared to other health issues (45 vs. 55). These are very low numbers, and also falls into the group of countries where people are least productive in both of these regards (see also Fig. B.1 and B.2 in the Appendix). In the same vein, roughly 2 in 3 (65%) work with 5 or less productivity when they should have stayed at home because of psoriasis, and more than half (5) because of other health issues. Compared to other countries and the global picture, also falls into the worst end of the spectrum in this regard (see Fig. B.3 and B.4 in the Appendix). WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 12

13 PRODUCTIVITY & WORK LIFE Missed Work & Social Hours Shown in the table below are the number and percentage of people missing at least 5, 10, and 20 work hours and social hours (in the last 4 weeks) because of psoriasis and other health issues. Social hours include things such as family and social activities. Global Work and social hours missed Because of psoriasis Because of other health issues Because of psoriasis Because of other health issues Work hours missed N = 190 N = 180 N = 2,998 N = 2, hours 46% 51% 2 26% 10+ hours 3 37% 17% 17% 20+ hours 2 27% 1 1 Social hours missed N = 518 N = 518 N = 5,387 N = 5, hours 31% 35% 35% hours % hours 16% 16% 18% 1 While, on average, the in miss roughly the same amount of social hours as in other countries, a much larger proportion miss work hours because of both psoriasis and other health issues. Some results that stand out for are: Around half (46% and 51%) miss at least 5 or more work hours (over a period of 4 weeks) due to psoriasis and other health issues, respectively - much more than the global average. Similarly, roughly a third (3 and 37%) miss at least 10 or more work hours in a 4 week period. And finally, around 1 in 4 (2 and 27%) miss as much as 20 or more work hours in a 4 week period. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 13

14 PRODUCTIVITY & WORK LIFE Impact of Symptoms on Work Life Shown in the table below is the average impact on people s work life, as rated on a scale from 0-10, for a number of different aspects of living with psoriasis and symptoms. - On a scale from 0 to 10, 0 being no impact, 10 being maximum impact, please assess how each of the below aspects has impacted your work life in the past 4 weeks Global - On a scale from 0 to 10, 0 being no impact, 10 being maximum impact, please assess how each of the below aspects has impacted your work life in the past 4 weeks N = N = 3, Trouble walking Bleeding Pain Trouble sleeping Skin flare-up Depression or anxiety Stress Trouble walking Bleeding Pain Trouble sleeping Skin flare-up Depression or anxiety Stress As seen in the left graph, the aspects with the largest impact on people s work life in are stress and depression or anxiety. These are also the aspects with the largest impact for other countries. However, while depression and anxiety has a much larger impact in than globally, skin flare-ups, for example, have a much lower impact. As can be seen from Fig. B.5 in the Appendix, is also the country where depression and anxiety has the highest impact on work life, and where stress has the third highest impact. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 14

15 PRODUCTIVITY & WORK LIFE Support at Work In this section we analyse people s opinion on various aspects related to work and their psoriasis. % who Disagree or Strongly disagree Global Overall Women Men Overall Women Men "The company I work for has formal and informal 56% 57% 56% % systems in place to help me manage my psoriasis" (261) (205) (55) (2,336) (1,811) (515) "My manager understands the impact psoriasis has on me and my work performance" 48% (223) 49% (178) 4 (44) 51% (1,939) 5 (1,530) 48% (404) "My work colleagues know about my psoriasis and I get their support when needed" 35% (163) 37% (134) 29% (29) 39% (1,397) 39% (1,080) 38% (314) "I have a close co-worker who under stands what it means to live with psoriasis and we often talk about the impact it has on my work life" 28% (129) 28% (101) 29% (28) 41% (1,449) 41% (1,124) 4 (322) (The numbers in parentheses indicate the number of corresponding to the particular percentages, and are therefore not the total sample sizes.) As seen from the data and results in the table above, the in are generally more dissatisfied with work on a company and manager level compared to a colleague and co-worker level. A little over half (48% and 56%) disagree that their company has systems in place to help them manage their psoriasis and that their manager understands their condition and its impact on them and their performance. These numbers are very close to the global figures. However, in regards to colleagues, we see that fewer men in are dissatisfied compared to women and the global average. And finally, compared to the global picture, more men and women in (28-29% compared to 40-41% globally) seem to have a close co-worker who understands them and with whom they can talk. A note on the significance of these factors in relation to the happiness levels reported by the : when testing which of these 4 statements are linked to happiness, we found only the third one, My work colleagues know about my psoriasis and I get their support when needed, to be significant 4. It does however have a substantial effect. An interpretation of this result could be that the well-being of people living with self-reported psoriasis is more dependent on having acknowledging and inclusive social environments, than simply having one-on-one relationships that attempt to provide the same. 4 Please refer to the World Psoriasis Happiness Report 2018, Chapter 2, for more details on this analysis. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 15

16 Healthcare Professionals WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 16

17 HEALTHCARE PROFESSIONALS A variety of aspects related to the perceived relationship with healthcare professionals (HCPs) are analysed. This includes people s satisfaction with their healthcare providers overall, as well as general perceptions of the quality of the relationship and interactions with them. Healthcare Professional Type & Frequency of Visits First, we consider the distributions for the type of healthcare professional, how often people see their healthcare professional, and where the healthcare professional works. These are shown in the figures below for both and the global case. - HCP Type Who is your primary healthcare professional in relation to your psoriasis? N = 1,096 Global - HCP Type Who is your primary healthcare professional in relation to your psoriasis? N = 13,533 Other 2 A nurse Other 18% A nurse A dermatologist 48% My Personal Doctor / GP 1 A dermatologist 57% My Personal Doctor / GP 31% - HCP frequency How many times per year are you in contact with healthcare professional due to your psoriasis? N = 1,080 Global - HCP frequency How many times per year are you in contact with healthcare professional due to your psoriasis? N = 13,062 Don t see an HCP yearly 29% Don t see an HCP yearly 27% Once a year 2 to 5 times 6 to 12 times 12+ times per year 5% 9% 28% 28% Once a year 2 to 5 times 6 to 12 times 12+ times per year 6% 2 31% WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 17

18 HEALTHCARE PROFESSIONALS - HCP institution Is your primary helthcare professional for your poriasis: N = 563 Global - HCP institution Is your primary helthcare professional for your poriasis: N = 5,736 Working in an institution (clinic or hospital) run as part of the public healthcare sector (free for you) 26% Working in an institution (clinic or hospital) run as part of the public healthcare sector (free for you) 38% Working in a private institution that is paid by your private health insure 41% Working in a private institution that is paid by your private health insurer 29% Working in a private institution that you pay out of your pocket for your each visit 21% Working in a private institution that you pay out of your pocket for your each visit 2 Other 1 Other 1 Some of the things we see from the figures above are that: Whereas almost all of the countries in the analysis have dermatologists as the most common type of healthcare professional, is among the handful of countries with the largest proportion of these - at 57% (see also Fig. C.1 in the Appendix). In, most report that they go to a healthcare professional who works in a private institution that is paid by their private health insurer (as done by 41%). In fact, after the US, is the country with the second highest proportion of people doing this (see Fig. C.3 in the Appendix). This contrasts the global picture and what we see in many other countries as well. Nearly 9 out of 10 of in see their healthcare professional zero, once, or 2-5 times a year, with the three frequencies represented equally. This matches the global picture rather well (see e.g. Fig. C.2 in the Appendix). WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 18

19 HEALTHCARE PROFESSIONALS Diagnosis & Type of Treatment By far most in (79%, which is nearly 4 in 5) have their psoriasis diagnosed by a dermatologist. This makes one of the countries with the largest amount of people being diagnosed this way (see also Fig. C.4 in the Appendix). Was your psoriasis diagnosis by.. (N = 855) Global (N = 14,184) Dermatologist 79% 69% Personal doctor / GP 21% Haven t been diagnosed by a doctor 7% 6% Nurse 1% Other 1% As for the type of treatment and how people get or buy it, this is shown in the figures below. - Treatment type Which of the following forms of treatment are you currently using (you may use more than one)? N = 2,120 Prescription topical treatment (medical creams, ointments or foam) 45% Over-the-counter topical treatment (creams, lotions or ointments) 39% None of the above/not in treatment Systemic therapy (pills or injections) 1 1 Light therapy (sunlight or ultraviolet) 9% Biologic therapy (injections) Other (please specify) 5% Don t know Global - Treatment type Which of the following forms of treatment are you currently using (you may use more than one)? N = 36,574 Prescription topical treatment (medical creams, ointments or foam) 5 Over-the-counter topical treatment (creams, lotions or ointments) 3 None of the above/not in treatment 15% Systemic therapy (pills or injections) 1 Light therapy (sunlight or ultraviolet) 1 Biologic therapy (injections) 7% Other (please specify) Don t know WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 19

20 HEALTHCARE PROFESSIONALS When getting your treatment, which of the statements below best fits your situation? N = 820 I go to the pharmacy with a prescription and I pay the full price of the product 58% I go to the pharmacy with a prescription and I pay part of the price of the product, the rest is covered by my insurance I go to the pharmacy without a prescription and I pay the full price of the product 1 I go to the pharmacy with a prescription and I don t pay anything, the price is covered by my insurance completely Other 1 Global When getting your treatment, which of the statements below best fits your situation? N = 8,388 I go to the pharmacy with a prescription and I pay the full price of the product 3 I go to the pharmacy with a prescription and I pay part of the price of the product, the rest is covered by my insurance 26% I go to the pharmacy without a prescription and I pay the full price of the product 17% I go to the pharmacy with a prescription and I don t pay anything, the price is covered by my insurance completely 1 Other 1 The most reported treatment type in are prescription topicals, which almost half (45%) of the reportedly use (slightly fewer than the global norm). This is closely followed by over-the-counter topicals, used by roughly 2 in 5 (39%), a percentage slightly larger than the global average (see e.g. Fig. C.5 in the Appendix). As for the way to get one s treatment, most in by far report that they go to the pharmacy with a prescription and paying the full price of the product, as is done by 58 people. This is followed by 28% who do the same but without a prescription, leaving almost no one having their expenses covered in full or in part by insurance. It s rather common across many countries to go to the pharmacy with a prescription and pay the full price, as is also seen in the global case, but is in fact the country where the largest proportion of people do this (as seen in Fig. C.6 in the Appendix). WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 20

21 HEALTHCARE PROFESSIONALS Levels of Satisfaction with Healthcare Professionals The table below shows the average satisfaction reported by people living with self-reported psoriasis, as rated on a scale from 0-10 overall, by gender and by severity. On a scale from 0 to 10, how satisfied are you overall with your healthcare provider in regards to your psoriasis? Global Overall 5.08 (571) 4.97 (5,853) Gender - Female 5.11 (445) 4.95 (4,604) - Male 5.01 (124) 5.02 (1,220) Severity - Mild 5.75 (141) 5.23 (1,356) - Moderate 4.87 (316) 4.80 (3,157) - Severe 4.84 (112) 5.10 (1,314) (The numbers in parentheses show the total sample size for the scenario in the particular table cell.) As seen in the table above and e.g. by Fig. C.7 in the Appendix as well, is rather average in terms of people s satisfaction with their healthcare professional. What really stands out, however, is the fact that people s satisfaction with their healthcare professional takes a significant plunge from mild (self-perceived) psoriasis to moderate and severe. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 21

22 HEALTHCARE PROFESSIONALS Perceived Quality of the Interaction with Healthcare Professionals The table below shows the number and percentages of who disagreed or strongly disagreed with a number of statements in relation to their most recent interaction with their healthcare professional in relation to their psoriasis. Please assess the following aspects of your most recent interaction with a doctor / healthcare professional for your psoriasis : % who Disagree or Strongly disagree Global Overall Women Men Overall Women Men "The doctor gave me as much information as I wanted" 2 (113) 21% (93) 17% (20) 21% (2,813) 2 (968) 15% (188) "The doctor recognised and responded to my emotional state" 27% (150) 28% (121) 2 (29) 3 (1,619) 3 (1,349) 2 (263) "The doctor talked in terms I could understand" 1 (69) 1 (57) 1 (12) 15% (847) 1 (698) (145) "The doctor encouraged me to ask questions" 31% (170) 31% (136) 28% (34) 28% (1,612) 29% (1,333) 2 (273) "The doctor involved me in decisions as much as I wanted" 3 (168) 3 (130) 31% (38) 25% (1,417) 26% (1,165) 2 (244) "The doctor discussed next steps" 28% (155) 29% (124) 26% (31) 26% (1,482) 27% (1,228) 2 (246) "The doctor spent the right amount of time with me" 25% (141) 26% (113) 2 (28) 25% (1,395) 26% (1,148) 19% (241) "The doctor discussed about how my psoriasis affect my mental health and overall well-being" 4 (244) 4 (191) 4 (53) 5 (2,794) 5 (2,328) 37% (453) (The numbers in parentheses indicate the number of corresponding to the particular percentages, and are therefore not the total sample sizes.) Few things stand out here when comparing to other countries and the global case. Again, seems to fall quite close to the general picture. However, it s still interesting to highlight that e.g.: People seem to want their doctors to discuss or focus more on how psoriasis affects their mental health and overall well-being, as 4 of the in disagreed with the statement that their healthcare professional does this at all. Comparing the numbers to the global picture for the same question, it s also interesting that fewer women in disagree with the statement, but that more men do so (compared to the global numbers). More men in (31%) than globally (2) disagree that they doctor involved them in decisions. Also, 1 in 5 (2) in both and globally don t think their doctor gave them as much information as they wanted. Finally, the gender differences in generally don t seem as large as they are globally, where women more often report dissatisfaction and disagreement in this regard than men. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 22

23 HEALTHCARE PROFESSIONALS Healthcare Professional Relationship The table below shows the number of people disagreeing with different statements around healthcare professional relationship. To what extent do you agree with each of the following statements? % who Disagree or Strongly disagree Global Overall Women Men Overall Women Men "My healthcare professionals are clear with the information about how to treat psoriasis" 4 (402) 4 (288) 3 (111) 4 (5,329) 41% (3,933) 36% (1,341) "My healthcare professionals fully understand the impact psoriasis has on my mental well-being" 45% (453) 5 (335) 36% (115) 5 (7,055) 56% (5,311) 4 (1,683) "I can get in touch with the healthcare professional when I m in need" 5 (493) 5 (358) 4 (132) 36% (4,798) 37% (3,532) 3 (1,227) "I have confidence in the abilities of my healthcare professionals to treat psoriasis" 4 (407) 4 (289) 35% (115) 4 (5,946) 4 (4,344) 39% (1,550) "I always follow the advice of my healthcare professionals" 2 (243) 2 (153) 26% (86) 27% (3,692) 27% (2,611) 28% (1,035) "I ve been informed about all the different treatment options related to my condition" 59% (570) 6 (410) 51% (157) 55% (7,240) 57% (5,424) 5 (1,763) "The system provides me with sufficient financial support in relation to my skin condition" 76% (742) 8 (538) 6 (199) 67% (8,865) 69% (6,535) 6 (2,267) "There is sufficient public awareness regarding my disease" 8 (791) 88% (572) 71% (215) 79% (10,127) 8 (7,524) 7 (2,532) (The numbers in parentheses indicate the number of corresponding to the particular percentages, and are therefore not the total sample sizes.) Here, we see a large degree of disagreement and dissatisfaction in general. For instance: 2 in 5 (4) don t think their healthcare professional is clear with the information on how to treat psoriasis, which goes for both and globally. Half the people (5) don t think they can get in touch with their healthcare professional when they need to. And as much as 3 in 5 (59%) don t think they have been informed of all the different treatment options. But the largest degree of disagreement and dissatisfaction is in regards to the system, financial support, and public awareness, where more than 3 in 4 (76%) and 4 in 5 (8), respectively, disagree that they are sufficient. Also, women are generally more dissatisfied than men, both in and globally. In some cases, though, the difference is even greater in, where e.g. 8 women vs. 6 men don t think the system provides enough financial support. WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 23

24 Appendix

25 GENERAL RESULTS & HAPPINESS General Results & Happiness Figure A.1: Distribution of subjective, self-perceived severity by country Severity by country Sample size Mild Moderate Severe Australia Colombia Czech Republic Ireland Japan Norway Portugal Russian Federation United Kingdom United States 967 6,590 2,287 2, ,190 3,546 2,560 1, ,080 1,732 3,032 1,127 4,810 4,944 4,671 3,699 3,382 27% 4 26% 37% % % 37% 56% 36% 3 39% 57% 36% 2 27% 5 47% % 5 57% 5 45% 49% 49% 35% % 49% 5 49% 21% 21% 1 18% % 8% 15% 26% 21% 27% 2 WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

26 GENERAL RESULTS & HAPPINESS Figure A.2: ranking: Psoriasis happiness levels per country (With 95% confidence interval bands) Sample size Colombia Russian Federation Portugal Ireland Belgium Norway United States Japan Australia Czech Republic United kingdom China 4,284 4,075 7,849 9,786 8,717 5,646 1,564 3,641 1, ,893 1,109 4,875 4,246 5,451 4,754 1,427 1, , Average Happiness Score Average happiness score for each country. Colours show the score difference, with green indicating an average score higher than 6 and dark blue a lower average score. The context is filtered on Cantril Ladder which ranges from WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

27 GENERAL RESULTS & HAPPINESS Figure A.3: Average happiness gap by country (With 95% confidence interval bands) Sample size Portugal Colombia 5,646 1,893 4, % Russian Federation Japan 4,284 8,717 7,849 9,786 1,427 4,754-1% -8% -9% -9% Ireland Czech Republic United States 5,451 1, , % , , ,564-2 Norway 1,109-2 United Kingdom 5,736-25% Australia 1,660-27% Average happiness gap WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

28 PRODUCTIVITY & HAPPINESS Productivity & Happiness Figure B.1: Productivity at work (measured on a scale from 0-100) when people should have stayed home because of their psoriasis In the last 4 weeks, for the time when you worked even though you felt you should be at home because of your psoriasis, how productive would you say you were? Use a scale from 0 to 100, 0 being not at all productive, 100 being totally productive. Sample size United States United Kingdom Czech Republic Portugal Russian Federation Average productivity at work when people should have stayed home because of their psoriasis WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

29 PRODUCTIVITY & HAPPINESS Figure B.2: Productivity at work (measured on a scale from 0-100) when people should have stayed home because of other health issues Using the same scale, how affected was your productivity at work while you felt you should have stayed home because of other health issues? 0 means not at all productive, 100 means totally productive. Sample size Russian Federation Portugal Czech Republic United States United Kingdom Average Productivity at work when people should have stayed home because of other health issues WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

30 PRODUCTIVITY & HAPPINESS Figure B.3: Percentage of people working at 5 productivity or less (measured on a scale from 0-100) when they should have stayed home because of their psoriasis In the last 4 weeks, for the time when you worked even though you felt you should be at home because of your psoriasis, how productive would you say you were? Use a scale from 0 to 100, 0 being not at all productive, 100 being tptally productive. Sample size Russian Federation Portugal Czech Republic United Kingdom United States % 97% 65% 65% 6 57% 49% 48% % 38% 35% 3 Percentage of people working at 5 productivity or less when they should have stayed home because of their psoriasis WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

31 PRODUCTIVITY & HAPPINESS Figure B.4: Percentage of people working at 5 productivity or less (measured on a scale from 0-100) when they should have stayed home because of other health issues Using the same scale, how affected was your productivity at work while you felt you should have stayed home because of other health issues? 0 means not at all productive, 100 means totally productive. Sample size United Kingdom United States Czech Republic Portugal Russian Federation % % 45% 4 39% 38% % Percentage of people working at 5 productivity or less when they should have stayed home because of other health issues WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

32 PRODUCTIVITY & HAPPINESS Figure B.5: Average impact of symptoms on work life in the past 4 weeks, as measured on a scale from 0-10 On a scale from 0 to 10, 0 being no impact, 10 being maximum impact, please assess how each of the below aspects has impacted your work life in the past 4 weeks Stress Depression or anxiety Skin flare-up Pain Czech Republic Portugal Russian Federation United Kingdom United States Trouble sleeping Bleeding Trouble walking Czech Republic Portugal Russian Federation United Kingdom United States WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

33 PRODUCTIVITY & HAPPINESS Table B.6: Estimated cost to society from lost productivity (adjusted for purchase) power parity): Annual cost Absenteeism ($Million) % Absenteeism due to psoriasis Annual cost Presenteeism ($Million) % Presenteeism due to psoriasis Total cost ($Million) Total cost per people in employment ($Million) Total cost as a percentage of GDP $2, $ % $3,413 $ $ % $ $767 $ % $ % $ % $574 $ $17, $3, % $20,497 $ % $14, $1, % $15,985 $ % $ % $ $57 $ $2, % $1, $3,211 $ $ % $ % $1,070 $ % Portugal $ $ % $215 $ % Russia $2, % $ % $3,450 $ % $1, % $ $1,313 $ % UK $2, % $ $2,638 $ % US $22, % $7, $30,517 $ % WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

34 HEALTHCARE PROFESSIONALS & PSORIASIS Healthcare professionals and Psoriasis Figure C.1: Distribution of type of healthcare professionals engaged for psoriasis by country Who is your primary healthcare professional in relation to your psoriasis? Sample size A dermatologist My personal doctor/gp A nurse Other Czech Republic Portugal Russian Federation United Kingdom United States , , , , % 3 76% 48% 35% 6 78% 49% 47% 47% 5 51% 35% 46% 1 55% 9% 4 55% 29% 6% 3 25% 35% 1 31% 5 31% 5% 8% 2 9% 15% 8% 1 16% 15% % 16% 8% 21% WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

35 HEALTHCARE PROFESSIONALS & PSORIASIS Figure C.2: Frequency of visits to healthcare professional for psoriasis by country How many times per year are you in contact with healthcare professionals dues to your psoriasis? Sample size Don t see an HCP yearly Once a year 2 to 5 times Czech Republic Portugal Russian Federation United Kingdom United States 1, , , % 2 19% 31% 2 18% 39% 41% 36% 2 41% 31% 26% 19% 29% 29% 2 16% 25% 27% 2 29% % 27% 18% 2 28% 37% 36% 37% 3 35% 26% 21% % 41% Sample size 6 to 12 times 12+ times per year Czech Republic Portugal Russian Federation United Kingdom United States 1, , , % 9% 18% % 9% 7% % 6% 6% 1% 5% 7% 6% WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

36 HEALTHCARE PROFESSIONALS & PSORIASIS Figure C.3: Healthcare Professional institution by country Is your primary healthcare professional for your psoriasis? Sample size Working in an institution (clinic or hospital) run as part of the public healthcare sector (free for you) Working in a private institution that is paid by your private health health insurer Working in a private institution that you pay out of your pocket for your each visit Other Czech Republic Portugal Russian Federation United Kingdom United States % 78% % % 51% 78% 8 17% 41% % 29% 25% 1 8% 8% 2 6% 58% 21% 27% 5% 47% 27% 45% 21% 29% 6% 1 1 8% 1 8% 21% 21% 7% 1 15% 8% 1 6% WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

37 HEALTHCARE PROFESSIONALS & PSORIASIS Figure C.4: Distribution of who has diagnosed their psoriasis (please note this report is based on self-reported psoriasis) Has your psoriasis been diagnosed by: Sample size A dermatologist My personal doctor/gp I haven t been diagnosed by a doctor Czech Republic Portugal Russian Federation United Kingdom United States ,813 1,058 1,189 1, , , % 56% 37% 75% 58% 71% 89% 8 75% 69% 81% 8 46% 7 31% 28% 17% 31% 21% % 6% 1 49% 18% 7% 9% 5% 8% 5% 5% 5% 8% 5% Sample size Other A nurse Czech Republic Portugal Russian Federation United Kingdom United States ,813 1,058 1,189 1, , , % 1% 1% 1% 1% 1% 1% 1% WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

38 HEALTHCARE PROFESSIONALS & PSORIASIS Figure C.5: Distribution of treatment type by country Which of the following forms of treatments are you currently using (you may use more than one)? Sample size Prescription topical treatment (medical creams, ointments or foam) Over-thecounter topical treatment (creams, lotions or ointments) Systemic therapy (pills or injections) Light therapy (sunlight or ultraviolet) Czech Republic Portugal Russian Federation United Kingdom United States 2,120 1, ,005 2,762 1,968 1,546 2,295 1,026 1,845 1,160 1,778 3,184 1,542 45% 6 41% 5 57% % 4 55% % 5 39% % 4 28% 3 31% 29% 45% 29% 31% 38% 1 1 6% 1 7% 1 15% 9% % 17% % 9% 1 7% % Sample size Biologic therapy (injections) Other (please specify) None of the above/not in treatment Don t know Czech Republic Portugal Russian Federation United Kingdom United States 2,120 1, ,005 2,762 1,968 1,546 2,295 1,026 1,845 1,160 1,778 3,184 1,542 7% 5% 5% 5% 7% 6% 7% 7% 5% 17% 5% 1% 6% 5% 1 1 6% 1 16% % WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

39 HEALTHCARE PROFESSIONALS & PSORIASIS Figure C.6: Distribution of how people get and pay for their treatment When getting your treatment, which of the statements below best fits your situation? Sample size I go to the pharmacy with a prescription and I pay the full price of the product I go to the pharmacy without a prescription and I pay the full price of the product I go to the pharmacy with a prescription and I pay part of the price of the product, the rest is covered by my insurance Czech Republic Portugal Russian Federation United Kingdom United States % % 2 49% % 17% 37% 1 28% % 1 21% 16% 28% 16% 6% 9% % 28% 1 25% 1% 6% 5 46% 57% 5 Sample size I go to the pharmacy with a prescription and I don t pay anything, the price is covered by my insurance completely Other Czech Republic Portugal Russian Federation United Kingdom United States % 19% 1 8% 9% 1% % 1 15% 9% 1 1 9% 1 1 9% 16% 1 8% 29% 2 WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

40 HEALTHCARE PROFESSIONALS & PSORIASIS Figure C.7: Average levels of satisfaction with healthcare provider in relation to psoriasis by country, as measured on a scale from 0-10 On a scale from 0 to 10, how satisfied are you overall with your healthcare provider in regards to your psoriasis? Sample size Portugal United States United Kingdom Czech Republic Russian Federation Average HCP satisfaction WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

41 LEVELS OF SELF-REPORTED STRESS & LONELINESS Levels of self-reported Stress & Loneliness Figure D.1: Percentage of people living with high stress 1 Sample size Norway 624 Colombia 787 Japan 534 Russian Federation 1,341 1,201 1,712 Czech Republic Ireland 459 Portugal 1,639 United States 1,813 Australia 884 1,744 1, ,699 2,252 United Kingdom 2,340 1, % 51.7% 51.8% 56.8% 57.7% % 63.9% 64.6% 65.7% % % 68.7% 72.5% 75. Percentage living with high stress 1 In this case, high stress is characterised by a score of 20 or higher on Cohen s Self-perceived Stress Scale. This scale consists of 10 questions related to how the respondent experiences life events and gives an indication of the general resilience of the respondent. The Perceived Stress Scale is not suitable to give an actual stress diagnosis of the individual, but is often used to evaluate and address stress levels in sub-groups of the population. Source: Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX

42 LEVELS OF SELF-REPORTED STRESS & LONELINESS Figure D.2: Percentage of people living in loneliness. (The methodology employed for exploring loneliness was a revised version of the UCLA Loneliness Scale, considered by some the golden standard. The methodology consists of three questions related to social isolation and loneliness 2. The analysis of the results used the most conservative interpretation of the loneliness scores. 3 ) Sample size Portugal 1,201 1,234 1,189 Russian Federation 916 Japan 521 1, Norway 613 Colombia Czech Republic 93 1,445 1, ,250 United Kingdom 1,739 Australia 649 Ireland 207 United States 1, % % % % 30.1% 30.7% % % % % 43.1% Percentage living in loneliness 2 The three questions are: How often do you feel that you lack companionship?, How often do you feel left out?, and How often do you feel isolated from others?, all of which are answered with often, some of the time, or hardly ever. Source: Hughes, M. E., Waite, L. J., Hawkley, L. C., & Cacioppo, J. T. (2004). A short scale for measuring loneliness in large surveys: Results from two population-based studies. Research on Aging, 26, Examples of establishing a minimum score for loneliness: A total score of at least 4 (Chalise, Kai, & Saito, 2010), 6 (Hand et al.,2014; Shiovitz-Ezra & Ayalon, 2012) and 7 (Boehlen et al., 2014). We have picked the latter, which is the most conservative approach. It means that the have to answer at least often to one of the 3 questions and at least some of the time to the other two. Source: Boehlen, F., Herzog, W., Quinzler, R., Haefeli, W. E., Maatouk, I., Niehoff, D., et al. (2014). Loneliness in the elderly is associated with the use of psychotropic drugs. International Journal of Geriatric Psychiatry. WORLD PSORIASIS HAPPINESS COUNTRY REPORT APPENDIX