Download the europso psoriasis patient study

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.