Hello We attach some data, and indications of important requirements from a leading Scottish dermatologist, for the petitions committee.

Transcription

1 Hello We attach some data, and indications of important requirements from a leading Scottish dermatologist, for the petitions committee. As a Scots patient charity; We hope, and wish that GP training is extended and improved, and standardised. SIGN guidelines will help-if implemented. There should be at least ONE person in each GP practice with specialised training in psoriasis, given how common it is. To spot and recognise the different types, the impact on patients. There must be joint clinics in major hospitals, and GPs must know when to refer. Thank you. We may send in some more information. Regards. Janice Johnson

2 Number of Psoriasis patients in Scotland Estimated population of Scotland (30 th June 2007): 5,144,200 1 Prevalence of psoriasis: 2% 2 Incidence of psoriasis: 0.08% 3 Prevalent population: 102,884 Incident population: 4,115 Table 1: Projected spread of psoriasis over 5 years year 1* year 2 year 3 year 4 year 5 104, , , , ,403 *) Assumption year 1: prevalent cases + ½ of incident cases; rest: previous year + incident cases. Psoriasis affects teenagers and young adults as well as people in their 50s and 60s. The age of onset in patients with psoriasis shows two distinctive peaks: at ages 16 to 22 and again at ages 57 to 60.9 The mean age of onset is in the late 20s, and most psoriatic patients (72%) are diagnosed before they reach the age of 31. 4, 5 Patients with an earlier age of onset often experience a more severe form of the disease, with erratic patterns of recurrence. 6 Up to half of psoriasis patients have a moderate-to-severe form of the disease. The two cross-sectional surveys by EUROPSO both reported that about 60% of responding patients had moderate or severe psoriasis. The survey used patient reported 4, 5, 7 skin involvement (BSA) to determine disease severity. A cross-sectional study in Spain of 1,774 psoriatic patients seeking care from dermatologists demonstrated that the majority of patients with psoriasis were classified as having a moderate or severe form of the disease.10 The study defined moderate and severe psoriasis as lesions covering 10% BSA or more or a PASI score of more than 3. More than half (56%) of the study population had a BSA of >10%. Using the PASI score criteria, nearly two-thirds (70%) of the study population were classified as having moderate or severe psoriasis. 6 The Federation of European Psoriasis Associations (EUROPSO) Patient Survey 1 mailed 50,500 survey questionnaires about treatment history and treatment satisfaction to dermatologists and psoriasis patient organisations in seven European countries (Belgium, Czechoslovakia, Finland, France, Germany, Italy, and the Netherlands) during The survey yielded 18,386 responses (response rate: 36%); of the responders, 75% suffered from plaque psoriasis. 4, 7

3 The EUROPSO Patient Survey 2 mailed 20,735 questionnaires directly to members of patient organisations in eight European countries (Denmark, Estonia, Iceland, Norway, Slovakia, Spain, Sweden, and the UK) during Of the 7,820 psoriatic patients who responded (response rate: 38%), 80% suffered from plaque psoriasis. 5 Psoriasis often can have a profoundly negative impact on quality of life. Psoriasis has a substantially negative effect on both the mental and physical QoL of patients with the disease; in particular, psoriasis lesions on visible body parts (e.g., the scalp or upper limbs) impair QoL. 8 Severe psoriasis significantly and negatively affects interpersonal interactions across all age groups. Patients with severe psoriasis may not recognise the severity of their disease. A 1998 survey of members of the NPF in the US measured the effect of psoriasis on both the psychological and physical aspects of patient QoL. The survey yielded 17,488 respondents; of these, 6,194 were identified as having severe psoriasis, defined by BSA >10%; erythrodermic psoriasis; generalised pustular psoriasis; or psoriasis causing difficulties in three of four daily activities or requiring systemic therapy. 9 However, only 17% of these severe patients rated their disease as severe, while 50 % rated their disease as moderate, 26 % rated their disease as mild, and 8% rated their disease as in remission. Interpersonal interaction was the psychosocial activity most affected across all age groups. 9 Respondents perception of the physical activity that was most affected by psoriasis varied across the age groups: 9 o Younger and middle-aged patients (18-34 years and years, respectively) identified sexual activity as being the most negatively affected aspect of physical QoL. 9 o Older patients identified sleeping and the use of hands as being the most negatively affected aspect of physical QoL. 9 Of the 6,194 respondents who indicated they had severe psoriasis, nearly 80% reported that it had a negative impact on their lives. 9 On average, 10% of the total time those patients with severe psoriasis spent conducting daily activities each month was negatively affected by the disease. 9 Those patients with severe psoriasis who worked also reported that psoriasis caused them to miss an average of 2.3 working days per year, while 6% reported discrimination at work directly related to their disease. 9 Other surveys in the US conducted by the NPF found the following: Sixty percent of those patients with severe psoriasis who were surveyed feared that their partner was embarrassed during sex, while nearly 40% believed their disease negatively affects emotional closeness with their partner. 9 Most patients with severe psoriasis believe their disease hinders their daily social interactions (57%) and that they feel like outcasts (64%).

4 Among the specific social activities identified by patients with severe psoriasis as being the most challenging are going to the beach (68%) and going to the gym (59%). 10 The psychosocial factors most affected by psoriasis in all ages and severities include inconvenience caused by shedding of skin (66%), self-conscious feeling among strangers (53%), and time-consuming treatment (51%). 11 Severe psoriasis affects daily activities at home, work, and school. Patients with severe psoriasis suffer more in their day-to-day activities than patients with 5, 9, 12 mild or moderate psoriasis. Severe psoriasis is typically linked to a larger impact on the physical and psychological dimensions of HRQoL than moderate psoriasis, thus showing a distinct relationship between psoriasis severity and patient QoL. 13 Higher PDI scores are directly correlated with increased patient-reported severity of the disease. 5 Psoriatic patients in Europe report reductions in daily function associated with psoriasis. More than half of the 25,810 psoriatic respondents in the both the EUROPSO Surveys 1 and 2 (77% and 60%, respectively) indicated that their psoriasis was a problem in their daily lives. 5, 7 The negative impact of psoriasis on QoL, measured as mean PDI score, increased with the severity of psoriasis. Patients with mild psoriasis reported 18.5% of the maximum disability score on a scale of 0 to 48, where 0 is no impact on daily function and 48 is a lot of impact on daily function. Moderate and severe psoriatic patients reported 29.2% and 43.8% of maximum disability score, respectively. 7 The portion of the PDI most affected was daily activities, which accounted for over half of the overall PDI score (5.1 of mean 9.7). 5 Choosing clothes, taking more baths, difficulties in sports activities, and sleep are some of the daily activities affecting most patients with psoriasis in Europe. 5, 7 Moderate-to-severe psoriasis is associated with a high rate of comorbidity. Several concomitant diseases (e.g., alcoholism, depression, and metabolic syndrome) are directly associated with psoriasis severity and duration. The manifestation of psoriasis is not limited to the skin. Psoriasis is a chronic systemic immune-mediated inflammatory disease and may be connected to concomitant diseases through a molecular mechanism with increased levels of proinflammatory factors, e.g., cytokines and TNF-a. 14, 15 In addition to psoriatic arthritis, which requires effective early intervention, several concomitant diseases are directly associated with psoriasis severity and duration. These diseases include alcoholism, depression, suicidality, metabolic

5 syndrome (obesity, dyslipidemia, arterial hypertonia, insulin resistant/type 2 diabetes mellitus), anaemia, carcinoma, gastrointestinal disorders, and liver and renal toxicities. 14 Psoriasis has been shown to increase mortality in cardiovascular diseases, and the disease is an independent risk factor of cardiovascular diseases and myocardial infarction. 16, 17, 18 This risk of myocardial infarction is greatest in younger patients (30-40 years) with severe psoriasis (relative risk of 3.10 [95% confidence interval: ]). 18 Figure 1 illustrates comparison of rates of comorbidities between controls and patients with mild psoriasis and severe psoriasis from a large GPRD database study in the UK. Mild psoriasis was defined as having a diagnostic code of psoriasis in the patient s electronic record. Severe psoriasis was defined as having a diagnostic code of psoriasis and receiving systemic treatment. 18 Figure 1: Rate of comorbidities of psoriasis compared to normal controls in the UK. MI = myocardial infarction; UK = United Kingdom. Note: P value is for mild psoriasis vs. control and severe psoriasis vs. control for all comorbidities, except for History of MI for severe psoriasis where P = Source: Gelfand et al., The rate was consistently and significantly higher for psoriasis in all evaluated groups of comorbidities. The rate of comorbidity increased with the severity of disease. 18

6 Moderate-to-severe psoriasis may be associated with an increased risk for mortality. A long-term retrospective cohort study found that patients with moderate-to-severe psoriasis have excess mortality that is linked to alcohol use and to smoking. 19 The cohort included 3,132 men and 2,555 women admitted for inpatient treatment of psoriasis who were followed for up to 22 years. The all-cause standardised mortality rate for moderateto-severe psoriasis patients was 1.62 (95% confidence interval [CI], ) compared to national mortality rates (defined as 1). 19 It is suggested that patients with severe psoriasis requiring hospitalisation have an excess risk for cardiovascular death, according to a Swedish retrospective registry study. The cause of death in a cohort of 8,991 patients hospitalised for psoriasis during 1964 to 1995 was compared to a cohort of 19,757 patients with psoriasis in outpatient care during 1987 to Results from this study should be interpreted with caution, since enrolment periods were not identical for the two groups. 16 The observed number of cardiovascular deaths recorded in the national death registry were higher for patients hospitalised for psoriasis than the expected number of deaths in the general population, with a relative risk of 1.52 (95% CI: The risk for cardiovascular deaths increased with the number of hospitalisations for psoriasis (P<0.001). 16 Patients treated for psoriasis in outpatient care had a slightly lower relative risk, 0.94 (95% CI: ) for death from cardiovascular disease as recorded in the national death registry than the general population. 16

7 Psoriasis represents a significant economic burden. Low QoL is an important driver of resource use and health care costs. Psoriatic patients with impaired QoL (as measured by DLQI >10) require increased health care resource use versus other psoriasis patients, according to the results in a large cross-sectional study (n = 2,962) in the UK, Germany, France, Italy, and Spain (Figure 2). 20 Figure 2: Incidence rate ratios of health care resource use of patients with psoriasis and DLQI <10 versus DLQI >10 in Europe. CI = confidence interval; DLQI = Dermatology Life Quality Index; HCRU = health care resource use; PCP = primary care physician. Note: DLQI range 0-30, where 30 is worst. Source: Sato et al., Psoriasis causes substantial indirect costs in lost work productivity. Psoriasis is responsible for substantial indirect costs. Patients with severe psoriasis indicate that they experience significant reductions in work days as well as financial distress. 21

8 Finlay and Coles (1995) conducted a survey of 369 patients with severe psoriasis in the UK.33 Of the 169 respondents who had severe psoriasis and were still working, 59% had been absent from work for a mean average of 26 days (median of 20 days) in the year before participating in the survey. Over one-third of the remaining nonworking surveyed population attributed their current unemployment status to psoriasis. 21 In a study in five European countries, 19 % of the patients with BSA 10 (n = 832) responded that they had employment disadvantages (e.g., making changes within a job, changing jobs, not being able to get a job or promotion, working fewer hours, or retiring earlier) compared to 13% of the patients with BSA <10 (n = 410) (P = 0.005). 22 The cost of treating psoriasis In the UK, government statistics report the frequency of hospitalisation for England only. The number of patients receiving inpatient care for psoriasis is small. HES data for England reported that in 2005/6 there were 8,787 inpatient admissions for psoriasis. These admissions were associated with 43,310 inpatient days. A further 5,110 day cases were reported (Table 2). The respective costs for England are reported in table 3.

9 Table 2. Hospital inpatient care for psoriasis, England 23 Day cases B e d Finished Consultant Episodes Admissi ons Emergen cy Mean Waiting Time Median Waiting Time Primary diagnosis: 4 character Male Waiting List L40.0 Psoriasis vulgaris ,761 L40.1 Generalized pustular psoriasis ,696 L40.3 Pustulosis palmaris et plantaris L40.4 Guttate psoriasis L40.5 Arthropathic psoriasis 3,453 3,342 1, , , ,965 L40.8 Other psoriasis ,373 2,662 21,95 L40.9 Psoriasis, unspecified 4,560 4,342 2, , Total ,110 Table 3. National tariff 2006/7, England, for dermatological conditions 24 Mean length of stay Median length of stay d a y s Elective long stay trimpoint Nonelective spell Nonelective long stay trimpoint Per day long stay payment (for days exceeding trimpoint) Elective HRG code HRG name spell tariff ( ) (days) tariff ( ) (days) J39 Major Dermatological Conditions >69 or w cc 3, , J40 Major Dermatological Conditions <70 w/o cc 1, , J44 Minor Dermatological Conditions or Benign Tumours ,

10 References 1 General Register Office for Scotland. Mid-2007 Population Estimates Scotland. 2 NICE; Evidence Review Group report for infliximab for the treatment of adults with psoriasis 3 NICE technology appraisal of infliximab for psoriasis manufacturer submission. 4 Salonen SH. The EUROPSO psoriasis patient study: treatment history and satisfaction reported by 17,990 members of European psoriasis patient associations Available at: 5 van de Kerkhof P, Salonen SH. Large scale European survey of quality of life in patients with psoriasis: second phase results on quality of life and treatment reported by 7,575 members of European Psoriasis Patient Associations Available at: (2003).pdf. 6 Ferrandiz C, Pujol RM, Garcia-Patos V, Bordas X, Smandia JA. Psoriasis of early and late onset: a clinical and epidemiologic study from Spain. J Am Acad Dermatol 2002 Jun;46(6): Dubertret L, Mrowietz U, Ranki A, van de Kerkhof PC, Chimenti S, Lotti T, et al., and the EUROPSO Patient Survey Group. European patient perspectives on the impact of psoriasis: the EUROPSO patient membership survey. Br J Dermatol 2006 Oct;155(4): Heydendael VM, De Borgie CA, Spuls PI, Bossuyt PM, Bos JD, de Rie MA. The burden of psoriasis is not determined by disease severity only. J Investig Dermatol Symp Proc 2004;9(2): Krueger G, Koo J, Lebwohl M, Menter A, Stern RS, Rolstad T. The impact of psoriasis on quality of life: results of a 1998 National Psoriasis Foundation patient-membership survey. Arch Dermatol 2001 Mar;137(3): National Psoriasis Foundation (NPF). Beyond psoriasis: the person behind the patient, survey of the emotional and social impact of psoriasis. 2004a. Available at: 11 Gupta MA, Gupta AK. Age and gender differences in the impact of psoriasis on quality of life. Int J Dermatol 1995 Oct;34(10): Stern RS, Nijsten T, Feldman SR, Margolis DJ, Rolstad T. Psoriasis is common, carries a substantial burden even when not extensive, and is associated with widespread treatment dissatisfaction. J Investig Dermatol Symp Proc 2004 Mar;9(2): Rapp SR, Feldman SR, Exum ML, Fleischer AB Jr, Reboussin DM. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol 1999 Sep;41(3 pt 1): Gottlieb AB, Chao R, Stokes D, Dann F. Psoriasis comorbidities. January 12, Manuscript Draft Kremers HM, McEvoy MT, Dann FJ, Gabriel SE. Heart disease in psoriasis. J Am Acad Dermatol 2007;57: Mallbris L, Akre O, Granath F, Yin L, Lindelof B, Ekbom A, et al. Increased risk for cardiovascular mortality in psoriasis inpatients but not in outpatients. Eur J Epidemiol 2004;19(3): Ludwig RJ, Herzog C, Rostock A, Ochsendorf FR, Zollner TM, Thaci D, et al. Psoriasis: a possible risk factor for development of coronary artery calcification. Br J Dermatol 2007 Feb;156(2): Gelfand JM, Niemann AL, Shin DB, Wang X, Margolis DJ, Troxel AB. Risk of myocardial infarction in patients with psoriasis. JAMA 2006;296: Poikolainen K, Karvonen J, Pukkala E. Excess mortality related to alcohol and smoking among hospitaltreated patients with psoriasis. Arch Dermatol 1999;135: Sato R, Milligan G, Molta C, Foehl J, Freundlich B, Singh A. Global poor quality of life is associated with increased health care resource utilization independent of disease severity in European plaque psoriasis patients. Poster presented at the 65th Annual Meeting of the American Academy of Dermatology, Washington DC. February 2-6, Finlay AY, Coles EC. The effect of severe psoriasis on the quality of life of 369 patients. Br J Dermatol 1995 Feb;132(2): Sato R, Piercy J, Kay S, Walker S, Singh A. Higher psoriasis disease severity is associated with increased comorbidities in Europe. Poster presented at the Autumn Meeting of the European Academy of Dermatology and Venereology, Rhodes, Greece The NHS Information Centre (England), Hospital Episode Statistics

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