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THE EUROPSO PSORIASIS PATIENT STUDY LARGE-SCALE EUROPEAN SURVEY OF QUALITY OF LIFE IN PATIENTS WITH PSORIASIS: SECOND PHASE RESULTS ON QUALITY OF LIFE AND TREATMENT REPORTED BY 7,525 MEMBERS OF EUROPEAN PSORIASIS PATIENT ASSOCIATIONS Van de Kerkhof P,1 Salonen S-H2 on behalf of the EUROPSO Patient Survey Study Group 1. Department of Dermatology, University Medical Centre Nijmegen, 6500HB Nijmegen, THE NETHERLANDS 2. EUROPSO, Fredrikinkatu 27 A 3, 00120 Helsinki, FINLAND INTRODUCTION IMPACT OF PSORIASIS TREATMENT OF PSORIASIS Psoriasis can have a profound effect on a person’s quality of life (QoL), particularly if it is extensive or difficult to treat. To continue to explore the effect of psoriasis on the QoL of European patients, and to learn about patients’ perceptions of current treatments, the European Federation of Psoriasis Patients Organisations (EUROPSO) has undertaken the second phase of a large-scale postal survey of members of European patient associations.The first phase of the survey was conducted in 2002 in seven different European countries. The overall mean PDI score for respondents aged 10 and above was 9.7, or 20% of the maximum score (Figure 2). Of the five subsections assessed using the PDI, almost 53% of disability noted (5.1 of 9.7) is accounted for by reported difficulty in the six items related to activities of daily living. Nearly a quarter (23%) of respondents with psoriasis stated that they were not currently consulting a healthcare professional. Overall, of those seeking care 46% see a dermatologist and 40% a family physician. However, variations exist between the different countries surveyed, with respondents in the UK, Norway, and Denmark & the Faroes referring to their family practitioner more than a dermatologist for their condition. In addition, 42% of the respondents who have been diagnosed with psoriatic arthritis see a rheumatologist. [Note: This 42% (1,024 of 2,422) refers to the percentage of the 32% (2,422 of 7,575) of respondents with psoriasis who also have PsA] At the time of the survey, topical treatments most commonly prescribed included vitamin D derivatives (22% of respondents), steroids (21%), and coal tar (10%). Methotrexate (6%) was the most frequently used systemic therapy, followed by acitretin, cyclosporine, and sulfasalazine (all used by 1% of respondents). Main forms of phototherapy employed were UVB and PUVA, used by 5% and 1% of respondents, respectively. Treatment patterns, however, differ between the various European countries surveyed. For example, the use of vitamin D derivatives is limited in Slovakia (7%) in comparison to the other countries, and topical steroid usage is low in Denmark & the Faroes (9%).There is relatively higher use of coal tar in the UK (24%), Slovakia and Spain (both 18%).There are also differences in prescribing of systemic treatments, with a comparatively high use of cyclosporine (4%) in Spain, of sulfasalazine (3%) in Slovakia, whereas there was a comparatively lower use of methotrexate (2%) in Estonia. Patient satisfaction was evaluated using a visual analogue scale of 1–10 where 1–3 = low satisfaction, 4–7 = moderate satisfaction, and 8–10 = high satisfaction. A total of 14% of respondents are dissatisfied with their treatment for psoriasis and 45% moderately satisfied. Only 33% expressed high satisfaction. Higher satisfaction with treatment is seen for phototherapies (42% and 45% high satisfaction with PUVA and UVB, respectively), although this tended to decline in respondents with moderate–severe psoriasis when compared with those with mild disease severity, as did satisfaction with a number of commonly used topical medications. In contrast, the high satisfaction reported with the use of systemic agents generally increased in cases of moderate-to-severe psoriasis, thus suggesting higher satisfaction with more aggressive therapy. Respondents considered various aspects of psoriasis therapy to be bothersome, with treatment being time-consuming reported as the most troublesome (48%), followed by inefficacy (29%) (Figure 4). Concerns about side effects also remain an important issue, these being a particular problem with currently available systemic agents. Figure 4. PSORIASIS DISABILITY INDEX SCORES Overall mean PDI score = 9.7 (maximum score 48) QUESTIONNAIRE DESIGN The questionnaire design followed the structure of the questionnaire utilised in the first phase of the study.This was developed in collaboration with the National Psoriasis Foundation (NPF) of the US, following the design of recent questionnaires to enable comparisons of the results. The self-administered questionnaire included sections on type of psoriasis, self-reported severity, symptoms, and history and current use of psoriasis treatments, as well as a validated psoriasis QoL scale — the Psoriasis Disability Index (PDI). This disease-specific questionnaire reflects the impact of psoriasis on the patient over the previous 4 weeks and is made up of 16 questions. Scoring is as follows: 3 points if the impact is considered ‘A lot’, 2 points ‘Very much’, 1 point ‘A little’, or 0 points ‘Not at all’.The maximum score is therefore 48.The PDI can also be expressed as a percentage of the maximum score. 6 5 4 3 2 1 0 Mean PDI score (%) The second phase of the survey was carried out during 2003, when a total of 20,735 questionnaires were directly mailed to the members of participating psoriasis patient organisations in Denmark & the Faroes, Estonia, Iceland, Norway, Slovakia, Spain, Sweden, and the UK. 5.1 1.9 1.1 Daily activities Leisure activities Treatment Figure 3. PSORIASIS DISABILITY INDEX SCORES ACCORDING TO SEVERITY OF PSORIASIS 50 35.4 40 Mean PDI score (%) A total of 7,820 responses were received, representing an overall response rate of 38% (Table 1). Of all respondents, 7,575 (97%) stated that they had psoriasis, and of these around 80% had chronic plaque psoriasis.Approximately 43% of respondents were male and 57% female, the majority (91%) were of Caucasian race, and around 34% had completed some further education.The mean age of onset of psoriasis was 24 years, with most people (72%) being diagnosed before the age of 31. 30 20 RESPONSE RATE Country Mailed Denmark & the Faroes Estonia Iceland Norway Slovakia Spain Sweden UK Total Returned 3,000 1,035 1,500 3,000 1,000 1,300 6,100 3,800 20,735 Response rate (%) 1,501 294 350 1,036 319 408 2,431 1,481 7,820 50.0 28.4 23.3 34.5 31.9 31.4 39.9 39.0 37.7 Severity of psoriasis based on self-reported skin involvement showed that 8% of the respondents with psoriasis reported no or very little involvement of psoriasis, 27% reported mild psoriasis (1–2% of the body covered; a palm indicated 1% body surface area), 45% moderate psoriasis (3–10% covered), and 16% severe psoriasis (>10% covered) (Figure 1). Therefore, 61% of respondents could be classified as having moderateto-severe psoriasis. Severity did not appear to be strongly related to age of onset, duration of psoriasis, or gender. The most common symptoms of psoriasis were scaling (90%), itching (74%) and skin redness (64%). Approximately 32% of respondents stated that they had been diagnosed with psoriatic arthritis by a physician (Figure 1). Figure 1. NUMBER OF RESPONDENTS WITH VARYING DEGREES OF SEVERITY OF PSORIASIS, AND WITH PSORIATIC ARTHRITIS 70 61 60 50 45 40 32 27 30 16 20 8 0 No/little psoriasis Mild psoriasis Moderate psoriasis Severe Moderate- Psoriatic psoriasis severe arthrities psoriasis 22.4 20.2 12.2 10 0 Overall Table 1. Number of respondents (%) 0.7 Work/school Personal activities relationships There was a consistent correlation between PDI and severity of disease (Figure 3). For each subsection, and for each individual question of the PDI, the reported impact increased with increased severity of psoriasis. Impact on activities of daily living increased from 19% in respondents reporting mild psoriasis, to 47% in those reporting severe psoriasis. RESULTS 10 0.9 Mild psoriasis Moderate psoriasis Severe psoriasis Results for the individual questions comprising the PDI highlight the considerable impact of psoriasis on specific aspects of the respondents’ lives, and this was more notable in people with moderate-to-severe psoriasis than in those with mild or moderate psoriasis (Table 2). PROBLEMS ASSOCIATED WITH TREATMENT Table 2. IMPACT OF MODERATE-TO-SEVERE PSORIASIS: PSORIASIS DISABILITY INDEX QUESTIONS (N=4,608) Activity Clothing choice Wash/change clothes More baths Sport difficulties Home messy/untidy Sleep affected Hairdresser problem House/garden work Social relations Inhibit work/school Sexual difficulties Communal changing Time off work/school Personal relations Affected career More smoking/drinking % of patients replying “A lot/Very much” 46 38 37 26 26 25 21 20 20 17 16 14 12 10 7 7 Almost 50% of respondents with moderate-to-severe psoriasis replied ‘A lot’ or ‘Very much’ to the item related to choice of clothing (for example the colour or type), and nearly 40% to the items associated with washing/changing clothes and bathing. Furthermore, a gender difference was noted in the item for clothing choice, with more women than men being affected ‘A lot/’Very much’ (39% versus 23%). Around 25% replied ‘A lot’/’Very much’ to the items associated with sporting activities, having a messy/untidy home, and effect on sleep. Scores were generally lower for items related to work or school activities and to increased smoking/drinking. Overall, 60% of respondents with psoriasis replied that their psoriasis was a problem or a significant problem. 50 Response (%) METHODS Figure 2. 48 40 29 30 20 19 18 Expensive Side effects 10 0 Timeconsuming Ineffective CONCLUSIONS • This survey is the second phase of the largest survey of people with psoriasis in Europe, with 7,820 responses from 8 European countries in this latter wave.The first wave was conducted in 2002, with 18,386 responses from 7 different European countries. • The results of this survey are comparable with those of the 2002 survey and appear to be consistent with similar postal surveys conducted amongst people with psoriasis. • Of the 7,575 respondents with psoriasis, 32% had been diagnosed with psoriatic arthritis. • Psoriasis has a profound effect on QoL, especially in patients with moderate-to-severe psoriasis as demonstrated by the considerable impact on PDI items related to activities of daily living. Respondents were particularly concerned with the effect on aspects associated with clothing and bathing. • Almost one-quarter of respondents are not currently seeing a healthcare professional for their psoriasis. • Satisfaction with available treatment options is limited, with only 33% of respondents having expressed high satisfaction for therapies used. Many respondents considered treatment to be time-consuming and/or ineffective. • The results highlight the need for the introduction of more effective therapies to control psoriasis. Improved treatment options not only have the potential to address current unmet therapeutic demands, but also in turn to enhance patient satisfaction and improve the QoL of psoriasis sufferers. EUROPSO is a federation of psoriasis patient associations in Europe. It aims to raise awareness of psoriasis and achieve equal opportunities for psoriasis patients in all European counties through active support of its member associations. EUROPSO would like to thank Biogen-IDEC for an unrestricted educational grant in support of this survey. THE EUROPSO PSORIASIS PATIENT STUDY LARGE-SCALE EUROPEAN SURVEY OF QUALITY OF LIFE IN PATIENTS WITH PSORIASIS: SECOND PHASE RESULTS ON QUALITY OF LIFE AND TREATMENT REPORTED BY 7,525 MEMBERS OF EUROPEAN PSORIASIS PATIENT ASSOCIATIONS Van de Kerkhof P,1 Salonen S-H2 on behalf of the EUROPSO Patient Survey Study Group 1. Department of Dermatology, University Medical Centre Nijmegen, 6500HB Nijmegen, THE NETHERLANDS 2. EUROPSO, Fredrikinkatu 27 A 3, 00120 Helsinki, FINLAND INTRODUCTION IMPACT OF PSORIASIS TREATMENT OF PSORIASIS Psoriasis can have a profound effect on a person’s quality of life (QoL), particularly if it is extensive or difficult to treat. To continue to explore the effect of psoriasis on the QoL of European patients, and to learn about patients’ perceptions of current treatments, the European Federation of Psoriasis Patients Organisations (EUROPSO) has undertaken the second phase of a large-scale postal survey of members of European patient associations.The first phase of the survey was conducted in 2002 in seven different European countries. The overall mean PDI score for respondents aged 10 and above was 9.7, or 20% of the maximum score (Figure 2). Of the five subsections assessed using the PDI, almost 53% of disability noted (5.1 of 9.7) is accounted for by reported difficulty in the six items related to activities of daily living. Nearly a quarter (23%) of respondents with psoriasis stated that they were not currently consulting a healthcare professional. Overall, of those seeking care 46% see a dermatologist and 40% a family physician. However, variations exist between the different countries surveyed, with respondents in the UK, Norway, and Denmark & the Faroes referring to their family practitioner more than a dermatologist for their condition. In addition, 42% of the respondents who have been diagnosed with psoriatic arthritis see a rheumatologist. [Note: This 42% (1,024 of 2,422) refers to the percentage of the 32% (2,422 of 7,575) of respondents with psoriasis who also have PsA] At the time of the survey, topical treatments most commonly prescribed included vitamin D derivatives (22% of respondents), steroids (21%), and coal tar (10%). Methotrexate (6%) was the most frequently used systemic therapy, followed by acitretin, cyclosporine, and sulfasalazine (all used by 1% of respondents). Main forms of phototherapy employed were UVB and PUVA, used by 5% and 1% of respondents, respectively. Treatment patterns, however, differ between the various European countries surveyed. For example, the use of vitamin D derivatives is limited in Slovakia (7%) in comparison to the other countries, and topical steroid usage is low in Denmark & the Faroes (9%).There is relatively higher use of coal tar in the UK (24%), Slovakia and Spain (both 18%).There are also differences in prescribing of systemic treatments, with a comparatively high use of cyclosporine (4%) in Spain, of sulfasalazine (3%) in Slovakia, whereas there was a comparatively lower use of methotrexate (2%) in Estonia. Patient satisfaction was evaluated using a visual analogue scale of 1–10 where 1–3 = low satisfaction, 4–7 = moderate satisfaction, and 8–10 = high satisfaction. A total of 14% of respondents are dissatisfied with their treatment for psoriasis and 45% moderately satisfied. Only 33% expressed high satisfaction. Higher satisfaction with treatment is seen for phototherapies (42% and 45% high satisfaction with PUVA and UVB, respectively), although this tended to decline in respondents with moderate–severe psoriasis when compared with those with mild disease severity, as did satisfaction with a number of commonly used topical medications. In contrast, the high satisfaction reported with the use of systemic agents generally increased in cases of moderate-to-severe psoriasis, thus suggesting higher satisfaction with more aggressive therapy. Respondents considered various aspects of psoriasis therapy to be bothersome, with treatment being time-consuming reported as the most troublesome (48%), followed by inefficacy (29%) (Figure 4). Concerns about side effects also remain an important issue, these being a particular problem with currently available systemic agents. Figure 4. PSORIASIS DISABILITY INDEX SCORES Overall mean PDI score = 9.7 (maximum score 48) QUESTIONNAIRE DESIGN The questionnaire design followed the structure of the questionnaire utilised in the first phase of the study.This was developed in collaboration with the National Psoriasis Foundation (NPF) of the US, following the design of recent questionnaires to enable comparisons of the results. The self-administered questionnaire included sections on type of psoriasis, self-reported severity, symptoms, and history and current use of psoriasis treatments, as well as a validated psoriasis QoL scale — the Psoriasis Disability Index (PDI). This disease-specific questionnaire reflects the impact of psoriasis on the patient over the previous 4 weeks and is made up of 16 questions. Scoring is as follows: 3 points if the impact is considered ‘A lot’, 2 points ‘Very much’, 1 point ‘A little’, or 0 points ‘Not at all’.The maximum score is therefore 48.The PDI can also be expressed as a percentage of the maximum score. 6 5 4 3 2 1 0 Mean PDI score (%) The second phase of the survey was carried out during 2003, when a total of 20,735 questionnaires were directly mailed to the members of participating psoriasis patient organisations in Denmark & the Faroes, Estonia, Iceland, Norway, Slovakia, Spain, Sweden, and the UK. 5.1 1.9 1.1 Daily activities Leisure activities Treatment Figure 3. PSORIASIS DISABILITY INDEX SCORES ACCORDING TO SEVERITY OF PSORIASIS 50 35.4 40 Mean PDI score (%) A total of 7,820 responses were received, representing an overall response rate of 38% (Table 1). Of all respondents, 7,575 (97%) stated that they had psoriasis, and of these around 80% had chronic plaque psoriasis.Approximately 43% of respondents were male and 57% female, the majority (91%) were of Caucasian race, and around 34% had completed some further education.The mean age of onset of psoriasis was 24 years, with most people (72%) being diagnosed before the age of 31. 30 20 RESPONSE RATE Country Mailed Denmark & the Faroes Estonia Iceland Norway Slovakia Spain Sweden UK Total Returned 3,000 1,035 1,500 3,000 1,000 1,300 6,100 3,800 20,735 Response rate (%) 1,501 294 350 1,036 319 408 2,431 1,481 7,820 50.0 28.4 23.3 34.5 31.9 31.4 39.9 39.0 37.7 Severity of psoriasis based on self-reported skin involvement showed that 8% of the respondents with psoriasis reported no or very little involvement of psoriasis, 27% reported mild psoriasis (1–2% of the body covered; a palm indicated 1% body surface area), 45% moderate psoriasis (3–10% covered), and 16% severe psoriasis (>10% covered) (Figure 1). Therefore, 61% of respondents could be classified as having moderateto-severe psoriasis. Severity did not appear to be strongly related to age of onset, duration of psoriasis, or gender. The most common symptoms of psoriasis were scaling (90%), itching (74%) and skin redness (64%). Approximately 32% of respondents stated that they had been diagnosed with psoriatic arthritis by a physician (Figure 1). Figure 1. NUMBER OF RESPONDENTS WITH VARYING DEGREES OF SEVERITY OF PSORIASIS, AND WITH PSORIATIC ARTHRITIS 70 61 60 50 45 40 32 27 30 16 20 8 0 No/little psoriasis Mild psoriasis Moderate psoriasis Severe Moderate- Psoriatic psoriasis severe arthrities psoriasis 22.4 20.2 12.2 10 0 Overall Table 1. Number of respondents (%) 0.7 Work/school Personal activities relationships There was a consistent correlation between PDI and severity of disease (Figure 3). For each subsection, and for each individual question of the PDI, the reported impact increased with increased severity of psoriasis. Impact on activities of daily living increased from 19% in respondents reporting mild psoriasis, to 47% in those reporting severe psoriasis. RESULTS 10 0.9 Mild psoriasis Moderate psoriasis Severe psoriasis Results for the individual questions comprising the PDI highlight the considerable impact of psoriasis on specific aspects of the respondents’ lives, and this was more notable in people with moderate-to-severe psoriasis than in those with mild or moderate psoriasis (Table 2). PROBLEMS ASSOCIATED WITH TREATMENT Table 2. IMPACT OF MODERATE-TO-SEVERE PSORIASIS: PSORIASIS DISABILITY INDEX QUESTIONS (N=4,608) Activity Clothing choice Wash/change clothes More baths Sport difficulties Home messy/untidy Sleep affected Hairdresser problem House/garden work Social relations Inhibit work/school Sexual difficulties Communal changing Time off work/school Personal relations Affected career More smoking/drinking % of patients replying “A lot/Very much” 46 38 37 26 26 25 21 20 20 17 16 14 12 10 7 7 Almost 50% of respondents with moderate-to-severe psoriasis replied ‘A lot’ or ‘Very much’ to the item related to choice of clothing (for example the colour or type), and nearly 40% to the items associated with washing/changing clothes and bathing. Furthermore, a gender difference was noted in the item for clothing choice, with more women than men being affected ‘A lot/’Very much’ (39% versus 23%). Around 25% replied ‘A lot’/’Very much’ to the items associated with sporting activities, having a messy/untidy home, and effect on sleep. Scores were generally lower for items related to work or school activities and to increased smoking/drinking. Overall, 60% of respondents with psoriasis replied that their psoriasis was a problem or a significant problem. 50 Response (%) METHODS Figure 2. 48 40 29 30 20 19 18 Expensive Side effects 10 0 Timeconsuming Ineffective CONCLUSIONS • This survey is the second phase of the largest survey of people with psoriasis in Europe, with 7,820 responses from 8 European countries in this latter wave.The first wave was conducted in 2002, with 18,386 responses from 7 different European countries. • The results of this survey are comparable with those of the 2002 survey and appear to be consistent with similar postal surveys conducted amongst people with psoriasis. • Of the 7,575 respondents with psoriasis, 32% had been diagnosed with psoriatic arthritis. • Psoriasis has a profound effect on QoL, especially in patients with moderate-to-severe psoriasis as demonstrated by the considerable impact on PDI items related to activities of daily living. Respondents were particularly concerned with the effect on aspects associated with clothing and bathing. • Almost one-quarter of respondents are not currently seeing a healthcare professional for their psoriasis. • Satisfaction with available treatment options is limited, with only 33% of respondents having expressed high satisfaction for therapies used. Many respondents considered treatment to be time-consuming and/or ineffective. • The results highlight the need for the introduction of more effective therapies to control psoriasis. Improved treatment options not only have the potential to address current unmet therapeutic demands, but also in turn to enhance patient satisfaction and improve the QoL of psoriasis sufferers. EUROPSO is a federation of psoriasis patient associations in Europe. It aims to raise awareness of psoriasis and achieve equal opportunities for psoriasis patients in all European counties through active support of its member associations. EUROPSO would like to thank Biogen-IDEC for an unrestricted educational grant in support of this survey.