Spain 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 Authors: Christian Birch Okkels, MSc Physics, Data Scientist at LEO Innovation Lab Michael Birkjær, MSc Political Science, Analyst at the Happiness Research Institute WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 3

4 GENERAL DATA & HAPPINESS RESULTS General Data & Happiness Results General Data & Distributions. Total sample size: 9,200 Gender distribution Age distribution Male 41% (3,779) Other 7% (669) 2 (2,161) 21% (1,944) Severity distribution Female 51% (4,703) % and number of 1% (123) 18% 17% (1,658) (1,532) 1 (1,124) 6% (526) 1% (132) Severe 15% (706) Mild 36% (1,699) Age Severity distribution (N = 4,671) Global (N = 54,438) Mild 36% 37% Moderate 49% (2,266) Moderate 49% 47% Severe 15% 16% In, roughly a third (36%) of the report a mild degree of psoriasis, about half (49%) perceive their psoriasis as moderate, and roughly 1 in 7 (15%) deem it severe. Compared to the global picture and the other countries in the analysis, the severity distribution in is very much around the average (see also Fig. A.1 in the Appendix) 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: 6.3 Happiness ranking: 3rd / 21 Happiness Global Happiness level Happiness gap Happiness level Happiness gap Overall % Gender - female % % - male % % Severity - mild % % - moderate % - severe % % The average happiness level of 6.3 places as 3rd in the happiness ranking of the 21 countries in the analysis. With a happiness gap of -1%, is among the top handful of countries when ranked by happiness gap, meaning they have among the smallest gaps in happiness between those living with self-perceived psoriasis and the general population (see Fig. A.3 in the Appendix). Some of the things that stand out in the table above are that: 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. Stress & Loneliness As seen from Fig. D.1 and D.2 in the Appendix, the percentages of in who experience high stress and loneliness are 2 : High stress: 57.7% Loneliness: 22.5% Compared to other countries, this places in the better end of the spectrum with regard to stress, and it s also the country with the third lowest proportion of people living in loneliness. In spite of this, however, having almost 3 in 5 (58%) of living with stress and almost 1 in 4 (2) living in loneliness is still not very good. The happiness level drops significantly with the severity of people s psoriasis. I.e., people suffering from more severe degrees of self-perceived psoriasis are significantly less happy and experience extremely large happiness gaps, once again in line with the results for other countries and the global picture. 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 = 606 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 -6% -18% -17% -8% -15% % - -17% Average happiness gap 4 (255) 2 (144) 2 (120) 1 (59) (59) (27) (25) 5% (29) (4) (19) (22) 2 % (10) Global - Comorbidities N=10,828 None of the below Depression or other mental disorders Psoriatic arthritis -8% -29% -26% 28% 26% 3 High blood pressure Other joint diseases apart from psoriatic arthritis Diabetes -2-27% % Heart and vascular diseases Other Lung diseases -2-18% -2 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 = 469 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 -6% -19% -16% -9% -1-18% -25% - -31% -21% -9% Average happiness gap 4 (201) 26% (122) 19% (87) 7% (35) 1 (58) (20) (16) 5% (23) (10) (12) (2) 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 = 135 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 -1% -17% -19% -6% -18% % -1% 39% (53) 16% (22) 2 (32) 18% (24) 8% (11) 5% (7) 7% (9) (6) (4) (3) 7% (10) 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 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 -6% -6% -5% MILD N = 159 1% 8% 5% 5 (82) 18% (28) 9% (14) 8% (13) 9% (15) (5) (7) 5 % (8) 1% (1) (3) (5) -5% % -17% -8% - MODERATE N = (135) 25% (78) 17% (53) 9% (28) 1 (36) (13) (9) (14) (6) (9) (10) -2-35% -27% -27% -26% -29% -5 SEVERE N = % (37) 28% (38) 4 (53) 1 (18) 1 (18) 7% (9) 7% (9) - 5% (7) --31% 5% (7) -4 5% (7) - 5% (7) Average happiness gap Average happiness gap Average happiness gap 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 overall results on comorbidities and happiness gaps, we note, among other things, that: 58%, or almost 3 in 5, of the in reportedly suffer from one or more of the listed comorbidities (as 4 report none of the above ). The most commonly reported comorbidities among with self-reported psoriasis in are depression or other mental disorders and psoriatic arthritis, experienced by 2 and 2 respectively. This is also what we see globally, only here the prevalence is slightly higher. These two comorbidities are also among those related to the largest drops in happiness, with gaps of -18% and -17%, respectively. Moving on to the split by severity in the bottom graphs, we see that: A much larger proportion of people with self-perceived moderate and severe psoriasis experience comorbidities. 5 of the people with mild psoriasis report that they don t have any of the listed comorbidities, meaning that 48% do. Compare this to almost 3 in 5 (57%) with moderate psoriasis who experience comorbidities, and as many as almost 3 in 4 (7) for severe psoriasis. This is the same pattern seen globally, only the prevalence of comorbidities seems slightly lower in. Across all of the comorbidities, the happiness gaps drop significantly the worse the degree of psoriasis, as also seen in the global case. The comorbidities connected to the largest gaps are heart and vascular diseases as well as lung diseases, for which people suffer a happiness gap of 2. Turning to the split by gender, we see that: The most reported comorbidity among women is depression or other mental disorders (experienced by 26%), while for men, it s psoriatic arthritis (experienced by 2). Both comorbidities are among the most common for both genders, though. These two comorbidities are also among those related to the largest happiness gaps for both genders. Though suffered by relatively few, heart and vascular disease is a comorbidity related to a very large happiness gap for both genders (-25% for women and -2 for men). 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 $1,313m Per 100,000 people in employment $6.9m As GDP 0.07% 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 in the better end in terms of the total cost as a percentage of GDP. However, 0.07 GDP, corresponding to a total cost of $1,313 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 63.9 (266) 53.2 (2,721) - Because of other health issues 70.2 (251) 62.9 (2,633) Percentage of people reporting less than 5 productivity - Because of psoriasis 38% (101) 51% (1,521) - Because of other health issues 3 (80) 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, in work at a slightly lower productivity level when they should have stayed at home because of their psoriasis compared to other health issues (~64 vs. ~70). However, compared to the global picture and other countries, these are rather good numbers. is actually the country where people, on average, have the second highest productivity level when they should have stayed at home because of their psoriasis, and also in the better half when it comes to the aspect of other health issues (see Fig. B.1 and B.2 in the Appendix). Furthermore, only slightly less than 2 in 5 (38%) work with 5 or less productivity when they should have stayed at home because of psoriasis, and about a third (3) when because of other health issues. Compared to other countries and the global picture, also lands into the better 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 = 292 N = 288 N = 2,998 N = 2, hours 16% 18% 2 26% 10+ hours 1 17% 17% 20+ hours 7% 9% 1 1 Social hours missed N = 426 N = 418 N = 5,387 N = 5, hours 26% 2 35% hours 2 15% 26% hours 1 9% 18% 1 Respondents in generally miss fewer work hours and social hours compared other countries and the global picture, both when it comes to their psoriasis as well as other health issues. However, in specifically, it seems that people more often miss out on social activities with family and friends because of both their psoriasis and other health issues than they do work. As shown above, only 16% miss at least 5 or more work hours (over 4 weeks) because of psoriasis, whereas the same number is 26% for social hours. In conclusion, this could indicate that people in more often go to work despite their psoriasis, and also that, using the data and results from earlier, they aren t as influenced or affected by their condition when it comes to productivity. 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 = 274 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 skin flare-ups. Depression and anxiety is also an aspect with a significant impact, though not as much as globally and in many other countries (see also Fig. B.5 in the Appendix). Trouble sleeping is also an aspect with much less impact on people s work life in compared to other countries. In general, fares quite well in regards to the impact of these aspects on work life. However, stress is still a huge factor with an impact as great as many other countries. 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 % systems in place to help me manage my psoriasis" (149) (115) (33) (2,336) (1,811) (515) "My manager understands the impact psoriasis has on me and my work performance" 41% (116) 41% (89) 4 (27) 51% (1,939) 5 (1,530) 48% (404) "My work colleagues know about my psoriasis and I get their support when needed" 2 (61) 21% (45) 25% (16) 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% (77) 27% (57) 3 (20) 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, in are, compared to the global picture and other countries in the analysis, generally less dissatisfied with the support they receive at work on both a company, manager, and colleague/co-worker level. Also, there are no real or significant differences between the genders. However, in itself, it s still worth noting that more than half (5) don t think their company has systems in place to help them manage their psoriasis, and more than 2 in 5 (41%) don t think their manager understands their condition and its impact. 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. 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 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 = 916 Global - HCP Type Who is your primary healthcare professional in relation to your psoriasis? N = 13,533 A nurse Other 16% A dermatologist 51% Other 18% A nurse A dermatologist 48% My Personal Doctor / GP 31% My Personal Doctor / GP 31% - HCP frequency How many times per year are you in contact with healthcare professional due to your psoriasis? N = 899 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 Once a year 2 to 5 times 6 to 12 times 12+ times per year 1 27% 31% 3 Don t see an HCP yearly Once a year 2 to 5 times 6 to 12 times 12+ times per year 6% 2 27% 31% WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 17

18 HEALTHCARE PROFESSIONALS - HCP institution Is your primary helthcare professional for your poriasis : N = 444 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) 78% 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 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 6% Working in a private institution that you pay out of your pocket for your each visit 2 Other 6% Other 1 Some of the things we see from the figures above are that: falls very much within the average when it comes to people s type of healthcare professional. Half (51%) of the report that they have a dermatologist as their healthcare professional and close to a third (31%) have their personal doctor or a GP. This is very much in line with the global case and most other countries (see also Fig. C.1 in the Appendix). In regards to frequency of visits, in are also very much like those in other countries. Nearly 9 out of 10 see their healthcare professional zero, once, or 2-5 times a year, with the three frequencies represented almost equally, much in line with the global picture and what we see for other countries (see e.g. Fig. C.2 in the Appendix). By far the most reported thing for with self-perceived psoriasis in is going to an healthcare professional free of charge in an institution that is part of the public healthcare sector, as is done by almost 4 in 5 (78%). This is a much larger proportion of people than in almost all other countries, and is also among the three countries for which this is the most common thing to do, and likewise where paying for visits oneself, either through insurance or out of the pocket, is very uncommon (see also Fig. C.3 in the Appendix). WORLD PSORIASIS HAPPINESS COUNTRY REPORT 2018 / 18

19 HEALTHCARE PROFESSIONALS Diagnosis & Type of Treatment By far the most people in (8, which is more than 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 = 971) Global (N = 14,184) Dermatologist 8 69% Personal doctor / GP 1 21% Haven t been diagnosed by a doctor 6% Nurse 1% 1% Other As for the type of treatment and how people get access to 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 = 1,778 Prescription topical treatment (medical creams, ointments or foam) 5 Over-the-counter topical treatment (creams, lotions or ointments) 29% None of the above/not in treatment Systemic therapy (pills or injections) 1 1 Light therapy (sunlight or ultraviolet) 10 % Biologic therapy (injections) 7% Other (please specify) 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 = 660 I go to the pharmacy with a prescription and I pay the full price of the product 17% 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 5 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 don t pay anything, the price is covered by my insurance completely 1 Other 8% 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 commonly reported treatment type in are prescription topicals, which more than half (5) of the use. Next are over-the-counter topicals, used by close roughly 3 in 10 (29%). These numbers are very much like those for many other countries and thus the global case as well (see also Fig. C.5 in the Appendix). As for getting their treatment, by far the most (5) in go to the pharmacy with a prescription and pay part of the price of the product, with the rest being covered by their insurance. This is different from the global picture and what is seen for many other countries. is among the four countries where this way of getting and paying for treatment is the most common(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 5.13 (449) 4.97 (5,853) Gender - Female 5.01 (353) 4.95 (4,604) - Male 5.55 (95) 5.02 (1,220) Severity - Mild 5.00 (95) 5.23 (1,356) - Moderate 4.97 (238) 4.80 (3,157) - Severe 5.59 (115) 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 stands out, however, is the fact that men are generally more satisfied than women, and also more than men on a global scale. Finally, it s interesting to see how people with self-perceived severe psoriasis in are more satisfied with their healthcare professional than those with mild and moderate psoriasis, indicating perhaps that they are, or feel, better taken care of. 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" 21% (94) 2 (80) 15% (14) 21% (2,813) 2 (968) 15% (188) "The doctor recognised and responded to my emotional state" 31% (137) 3 (115) 2 (22) 3 (1,619) 3 (1,349) 2 (263) "The doctor talked in terms I could understand" 8% (34) 9% (31) (3) 15% (847) 1 (698) (145) "The doctor encouraged me to ask questions" 3 (148) 37% (126) 2 (22) 28% (1,612) 29% (1,333) 2 (273) "The doctor involved me in decisions as much as 28% % 26% 2 I wanted" (123) (105) (18) (1,417) (1,165) (244) "The doctor discussed next steps" 31% (134) 3 (112) 2 (22) 26% (1,482) 27% (1,228) 2 (246) "The doctor spent the right amount of time with me" 25% (107) 26% (88) 21% (19) 25% (1,395) 26% (1,148) 19% (241) "The doctor discussed about how my psoriasis 56% % affect my mental health and overall well-being" (246) (206) (40) (2,794) (2,328) (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 the global picture and other countries. However, looking at specifically, it s interesting how women are generally more dissatisfied with aspects around the interaction with their healthcare professional than men. Also, as is the case for other countries and the global case, in - and especially women - seem to want their doctors to focus more on how their psoriasis affects their mental health and overall well-being. 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" 38% (322) 39% (229) 35% (90) 4 (5,329) 41% (3,933) 36% (1,341) "My healthcare professionals fully understand the impact psoriasis has on my mental well-being" 5 (443) 56% (328) 4 (112) 5 (7,055) 56% (5,311) 4 (1,683) "I can get in touch with the healthcare professional 4 45% 35% 36% 37% 3 when I m in need" (353) (263) (86) (4,798) (3,532) (1,227) "I have confidence in the abilities of my healthcare 39% 4 36% % professionals to treat psoriasis" (331) (238) (90) (5,946) (4,344) (1,550) "I always follow the advice of my healthcare % 27% 27% 28% professionals" (193) (127) (64) (3,692) (2,611) (1,035) "I ve been informed about all the different 5 55% 46% 55% 57% 5 treatment options related to my condition" (432) (137) (111) (7,240) (5,424) (1,763) "The system provides me with sufficient financial support in relation to my skin condition" 6 (529) 67% (391) 55% (133) 67% (8,865) 69% (6,535) 6 (2,267) "There is sufficient public awareness 77% 8 66% 79% 8 7 regarding my disease" (637) (474) (158) (10,127) (7,524) (2,532) (The numbers in parentheses indicate the number of corresponding to the particular percentages, and are therefore not the total sample sizes.) Once again, leans very much against the average in most other countries. It still stands out, however, that there s a fair amount of disagreement and dissatisfaction. For example: Almost 2 in 5 (38%) don t think their healthcare professionals are clear with the information on how to treat psoriasis. More than half (5) disagree that their healthcare professionals understand the impact psoriasis has on their mental well-being and that they ve been information of all the different treatment options related to their psoriasis. But the largest degree of disagreement and dissatisfaction, still, comes when we consider the system, financial support, and the public awareness, where almost 2 in 3 (6) and more than 3 in 4 (77%), respectively, are in disagreement. As we saw before for the healthcare professional interaction, women are generally also more dissatisfied than men with aspects around healthcare professional relationship, the system, and public awareness. 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