A framework for improving the quality of care for people with psoriasis

People with moderate to severe psoriasis are undertreated.1 They are often left on therapies for too long, despite them being ineffective,1, 2 and there is enormous variation in the experiences and the quality of care that people with psoriasis in Europe receive.3, 4 Early access to high-quality care – the right treatment, at the right time – is central to improving the overall treatment experience, and long-term outlook, for a person with psoriasis. It can also help a person to avoid the life course impairment that is commonly associated with psoriasis. However, there are currently many patients who are not gaining the benefits of early access to high-quality care. This may be due to a number of factors, including a lack of priority by stakeholders (e.g. clinicians, public, payers), a lack of standardised treatment goals, limited long-term data (both in terms of disease evolution and the impact of therapies), a lack of patient empowerment and the absence of national programmes for psoriasis care. In addition, there are inconsistencies in access to quality healthcare for people with psoriasis across Europe.3 In order to address these issues, a European Expert Working Group for Healthcare in Psoriasis (EEWGHP), comprising clinicians and patient advocacy group (PAG) representatives, was convened. The EEWGHP worked between June 2010 and December 2011 to outline the specific issues in psoriasis care, and start developing clear goals and actions that would help to address them. The goals and actions set out in this White Paper are based on the opinions of the EEWGHP, formed from extensive experience in their specialist fields and supported by relevant clinical evidence, where possible. They aim to provide a framework for improving early access to high-quality care for people with psoriasis in Europe, through raised awareness and consistent management. Ultimately, it is hoped that this framework will help to raise treatment aspirations in psoriasis (of both healthcare professionals (HCPs) and people with psoriasis), thereby improving clinical outcomes and quality of life (QoL) for people with psoriasis. The acknowledgements detail the membership of the EEWGHP. Professor Matthias Augustin, Chair, European Expert Working Group for Healthcare in Psoriasis. Psoriasis is more than just skin deep. In fact, it is a chronic autoimmune disease that has a significant impact on the physical and psychological well-being of the people it affects. Approximately 14 million people in Europe5 suffer from psoriasis and, although psoriasis is unlikely to be fatal, this highly stigmatised condition can have a negative impact on the life course a person takes, such as decisions about jobs and relationships.6 Psoriasis can be classified according to appearance and location. The most common type is plaque psoriasis, which generally presents as scaled plaques (raised, red skin covered by a flaky white build-up of dead skin) and is accompanied by skin tightness, bleeding and burning sensation. It is typically found on the elbows, knees, scalp and lower back. The other types of psoriasis are guttate, inverse, pustular and erythrodermic. The characteristics of these are widely described in the literature.6, 7 Psoriasis affects all ages, genders and ethnicities and, although it is not fully understood how psoriasis develops, it is known to be influenced by both genetic and immune-mediated components.8, 9 The course of the disease is characterised by cycles of remission and exacerbation, where flare-ups can be triggered by infection, trauma, temperature, stress and certain types of medicine, although no obvious trigger exists for many. The cyclical and chronic nature of this disease can also make psoriasis difficult to live with. Psoriasis is not only a dermatological condition; it involves multiple organ systems (e.g. cardiovascular, liver, respiratory and haematological systems) and people with psoriasis can therefore display a broad spectrum of symptoms and significant co-existing conditions.9 In clinical practice, defining psoriasis severity can be a complex task, as there are many clinical variables (such as location of affected body areas, change in disease over time and impact on QoL) and widely used assessment methods; however, the severity of psoriasis can be generally described as being mild, moderate or severe (Box 1).10, 11 When choosing the best treatment, dermatologists consider several factors, including: the type, severity and localisation of the psoriasis; the person’s age and medical history; and the impact the disease has on QoL. However, in its very basic terms, treatment for generalised psoriasis follows a 1-2-3 approach, starting with topical therapies first, followed by phototherapy and then medications such as oral systemics or infusion therapies (Figure 1).10 The 1-2-3 approach to psoriasis management. Ensure psoriasis is recognised as a serious medical condition in the wider healthcare arena Increase public awareness and understanding of psoriasis as a chronic, immune-mediated, non-communicable disease that can greatly affect a person’s QoL Improve the support and treatment given to patients with psoriasis to help them manage their disease Provide cost-effective healthcare to reduce the economic impact of psoriasis on society Approximately 14 million people in Europe have psoriasis and the disease has a profound effect on QoL.5 However, the impact of psoriasis on a person’s QoL does not yield the serious consideration it deserves in the wider healthcare arena. For instance, the World Health Organization (WHO), who are responsible for providing leadership on global health matters, do not currently list psoriasis in their action programme for non-communicable diseases.12, 13 In addition, psoriasis is frequently undertreated: recent studies in the United States found that as many as 80% of patients had not received treatment in the previous year,14 and 40% were receiving no treatment, even for the most severe disease.15 This situation is echoed in Europe, where a recent survey of 17 990 people with psoriasis indicated that over 70% experienced only low–moderate satisfaction with the treatment options made available to them.2 Due to its highly visible nature, people with psoriasis can feel stigmatised by their disease, experiencing open public rejection and being asked to leave public places.6 Teasing, taunting and bullying are also experienced by children and adolescents with skin diseases, including those with psoriasis.16 For many, the impact of psoriasis is similar to other chronic health conditions, including hypertension, diabetes and depression, and is ranked as one of the diseases that has the greatest impact on physical and mental health (Figure 2).17 In addition to having a direct effect, partners or relatives of people with psoriasis can also be significantly affected (Figure 3).18 Psoriasis has a negative impact on physical and psychological functioning.17 Comparison between healthy adults, people with psoriasis and other conditions assessed by SF-36: Physical Component Scores (a) and Mental Component Scores (b). Data in parentheses indicate the number of patients surveyed. *Rank; closer to 1 indicates better functioning. †From National Survey of Functional Health Status. ‡From Medical Outcome Study. Psoriasis impacts partners, families and carers of people with psoriasis.18 Data are from a UK study of 63 relatives/partners of patients with psoriasis, obtained through interviews and postal questionnaires. Psoriasis is not merely confined to dermatological symptoms. People with psoriasis commonly suffer from co-existing physical and psychological conditions. In one German study, 57.9% of subjects (n = 19 633) with psoriasis, versus only 34.5% of control subjects, were diagnosed with at least one comorbidity (Figure 4).19 These comorbidities can add to the impact that psoriasis has on QoL. People with psoriasis show markedly increased prevalence of co-existing conditions.19 Data were retrieved from a database of more than 1.3 million individuals insured by a German nationwide statutory health insurance scheme. All data-sets of patients with World Health Organization (WHO) International Classification of Diseases (ICD)-10 codes marking psoriasis (L40) in the year 2005 were extracted and analysed for diagnoses related to comorbidities of interest. Individuals from the data-set with no diagnosis of psoriasis served as controls. The significant physical, psychological, social and economic burden, and stigmatisation, associated with psoriasis may result in an individual failing to achieve their ‘full life potential’, especially since the onset of psoriasis can often occur early in childhood.4, 20, 21 From this, the concept ‘cumulative life course impairment’ (CLCI) has been used to capture the overall effect of psoriasis on a patient’s life course.22 CLCI results from the interaction between the burden of stigmatisation and physiological and psychological comorbidities, with coping strategies and external factors. It has been evaluated in chronic skin conditions, including psoriasis, and has been proposed as a concept that may lead to better understanding of the overall impact of psoriasis on a patient (Figure 5). The cumulative impact psoriasis has on a patient’s life is such that people with poorly managed psoriasis may follow a different or diminished life course compared with the course they may have taken if they had not had the condition.22 The concept of cumulative life course impairment (CLCI) in psoriasis.22 CLCI results from an interaction between the burden of stigmatisation, physical and psychological co-morbidities; and coping strategies and external factors. impairment may occur in patients with coping strategies and limited social even if they have a This impairment may be in patients with coping strategies and social support even if the burden is (Figure from only does psoriasis affect a patient’s it also has an economic impact on from several show that psoriasis from the with the of moderate to severe psoriasis found to between and patient are and treatment, with for the of comorbidities a of this moderate to severe psoriasis, the of is patient In addition to these direct can also due to patient patients with psoriasis show of and an increased of treatment of psoriasis can markedly reduce the in QoL and and and have that both and topical can the treatment treatment is affected by patient programmes to in psoriasis will better and more cost-effective care. early treatment of psoriasis and its comorbidities will reduce disease burden and long-term psoriasis is a disease that has an economic impact on and However, early of and patient has the to in psoriasis Psoriasis can have a negative impact on a person’s It is associated with physical and psychological and comorbidities, of this in the wider health and public arena is For many people with psoriasis, broad and understanding of the of the disease may help of their In addition, psoriasis has a economic impact on healthcare disease as as in of In order to achieve the goals at the of this the EEWGHP that the actions are by relevant Healthcare such as the and psoriasis as a serious medical condition 2 for in this and in with patient and such as and to raise public awareness of psoriasis as a chronic, autoimmune disease that can greatly affect a person’s QoL and for the and of and of disease support programmes 2 for in this and cost-effective of healthcare to the of treatment European that national with to and national to the where there are currently no national and to provide a framework for the of national Ensure that provide on issues such as treatment and Increase awareness of relevant and wider society the of time patient to to and follow them treatment can be an for improving the quality of care to patients with study in an of where national may have to psoriasis care (Box this, not all have their treatment there are no in are currently in and many European the European in psoriasis can help to the in these they and For this clinicians often national more highly than European do have their the them can For the of to start patients with moderate to severe psoriasis on how to their and how to therapies widely In addition, both European and national provide on the for treatment and on how to for instance, in the When a treatment has not control of the disease When a treatment is due to co-existing disease or condition When a treatment is due to co-existing When a patient is to a treatment These and can for In addition to consideration to be given to how are to is that many are of due to a lack of and time also it difficult to to with of being for the of patients with such a complex such may the lack of priority given to psoriasis as a serious medical limited time a also that may to about their proposed treatment approach, or a patient with psoriasis the of their of these have been found to patient satisfaction and to lack of national in and lack of those that do in is and on and is a to improving European can help to the in national their be to and and to provide a framework for the of national They therefore to lead the of that is not given in awareness of and on patient can the of and of quality care. 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In this White Paper is a to action for stakeholders awareness of psoriasis as a serious medical condition that can greatly impact on a person’s QoL and that it is recognised as that people with psoriasis quality and cost-effective healthcare that the individual and wider economic impact of the disease the awareness and of treatment awareness of assessment and their the for assessment that can help to disease severity and outcomes in specific and conditions treatment goals and associated strategies that for people with psoriasis and patients to be in their individual treatment goals and strategies data on the impact of with therapies through national patient that to European and manage psoriasis through the of and an approach to care with and that the patient is given consideration For on the issues in this White address the most relevant of the EEWGHP. 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