Prof. Dr. med. Matthias Augustin
Director, Institute for Health Services Research in Dermatology and Nursing (IVDP) and German Center for Health Services Research in Dermatology (CVderm), Hamburg
Psoriasis is a chronic inflammatory disease, with an incidence in Western industrialised countries of 1.5 % to 3 %. It represents a great burden to the patient due to marked loss of quality of life, therapy-refractory course and frequent side effects of therapy. The medical and economic consequences are serious. Research has shown that patients with psoriasis report physical discomfort, impaired emotional functioning, a negative body and self-image, and limitations in their daily activities, social contacts and skin-exposing activities, and work. A significant amount of psoriasis patients concomitantly suffers from psoriatic arthritis, leading to additional disease burden and further quality of life reduction. It has also become evident that psoriasis may increase the risk of other chronic diseases, as associations with cardiovascular disease, type-2 diabetes, obesity, and metabolic syndrome are established. Moreover, growing literature on comorbidity risks in psoriasis and increased understanding of the immunopathology of psoriatic inflammation has redefined psoriasis as chronic systemic inflammation, especially in patients with moderate to severe course of disease. Another medically and socio-economically important fact is that psoriasis patients live with their disease for periods of up to several decades. Treatment of psoriasis and psoriatic arthritis can be challenging since a large variety of clinical conditions, different psoriasis types and patient factors need to be considered. Due to the lack of treatment methods, psoriasis used to be sparsely discussed. However, in the past 10 years, due to vital improvements and development of new treatment options, psoriasis has become a medically as well as socio-economically significant disease.
Many stakeholders of today’s health care systems are not aware how extremely burdening psoriasis can be for many patients. The patients’ constant reduction of quality of life, as well as the high amount of psychosocial strain for both patients and their families as well as additional financial costs have only been presented adequately by health services research in the last few years. Psoriasis has been the subject of numerous epidemiological surveys and studies on health care provision. Thorough knowledge of the structures and processes related to the provision of long-term care for psoriasis patients showed to be essential. Extensive health services research on dermatological care, structured and standardised therapeutic approaches, initiation of evidence-based S3 guidelines, modeling and implementation of goals in healthcare as well as the launch of regional psoriasis networks are all key features of a future-oriented new treatment approach.
The demand for patient safety has been addressed through the establishment of the nationwide and multinational psoriasis registries which determine the effects and side effects of therapeutic interventions in the long term.
Data from health services research impressively show the relevance of psoriasis as well as its treatment deficits, leading the WHO assembly in 2014 to declare psoriasis as one of the leading clinically relevant non-communicable diseases next to cardiovascular diseases and diabetes.
Many studies have shown that there is a discrepancy between the effective psoriasis treatments available and the current care situation. Psoriatic care is far from being satisfactory: many treatments show low efficacy, have marked side effects or are time-consuming, adding to a high burden of disease. Surveys in a number of countries have revealed a substantial under-treatment of patients with moderate to severe psoriasis, leaving a considerable proportion without adequate disease control. In addition, a high number of patients were not satisfied with their treatment, including the time needed for therapeutic skin care and the number of visits to physicians. Thus, modern psoriasis therapies should not only show good efficacy but also have impact on patient-reported outcomes.
Qualified and fact-oriented discussion is of vital importance and relevance in this field of research in open discussions as well as in direct communication with managing stakeholders within the health systems. To achieve this goal, the present compilation of facts on psoriasis and the national health systems of the 28 European countries and Canada was drawn up by psoriasis experts and patient representatives. In the interest and for the benefit of all patients, health care suppliers and stakeholders, we do hope that these chapters may be an asset for further discussions and strategies in healthcare provision.