Psoriasis is an inflammatory disease with a prevalence of around 2.3% in Spain, which means that around one million people suffer or will suffer from psoriasis in some of its variables.
The Spanish Academy of Dermatology and Venereology (AEDV) together with Acción Psoriasis, have presented the report Not all psoriasis is the same. The challenge of customization to highlight the need for a political commitment to promote the identification of each variant of psoriasis as well as a personalization of the patient and their treatment.
José Manuel Carrascosa, from the Dermatology Service of the Germans Trias i Pujol University Hospital in Badalona, coordinator of the Spanish Psoriasis Group of the AEDV and one of the authors of the report, assures that “80% of patients present the disease in its mild or moderate that is normally controlled from primary care and receive a topical treatment that does not always go well. The remaining 20% have moderate-severe variants of the disease that require systemic treatments”.
For this reason, personalization in the approach to psoriasis to identify each of the variants in which this disease occurs and the severity in which they appear is one of the keys to addressing the different challenges that exist around this pathology.
Straight
In the field of care, the document highlights the need for better coordination between health services and professionals. “It is necessary to offer better training and knowledge to the actors who have to see these patients, mainly primary care doctors and nurses, in addition to creating an easy and fast path for patients to reach the dermatological reference centers where they are adequate treatment can be carried out more efficiently”, said Carrrascosa.
From the point of view of diagnosis, access and adherence to treatment, the challenge is the differentiation of the manifestations of the disease. The Spanish Psoriasis Group has recommendations regarding the common forms of psoriasis, but there are none for the rarer forms of the disease. “The problem is that these guidelines cannot be made only by dermatologists, primary care physicians and the rest of the elements of the care circuit must also participate so that they are efficient and appropriate,” says the expert.
But in addition to the training of health workers, more research is required. Advances in the approach to inflammatory diseases in general have had a positive impact on dermatological inflammatory diseases in particular. “We have many possibilities that do not work in all patients nor do they achieve complete remission, but they do work in a very appreciable percentage”, says Carrascosa. For the most aggressive forms, specific therapies are being developed, but for the moment they are not approved, but they can mean a qualitative leap for these patients.
The fourth area on which the document on challenges focuses is the participation of the patient with psoriasis. For shared decision-making, there must be prior knowledge of the disease being suffered and that is where the work of patient associations comes in. “His diagnosis is an emotional shock,” says Santiago Alfonso, director of Acción Psoriasis. “It is a lifelong disease with a strong impact, so we ask that the approach and diagnosis be done as soon as possible and take into account the emotional burden it entails for the patient.” If you are going to live forever with a disease, “the patient must ally with it”, because, although treatments can mitigate it, they must “learn to live with it, to manage it, to be the manager of their disease”.
Understanding the moment in which the patient is, whether he accepts his illness or is in denial, whether it affects his working life or how it affects him on a social level are aspects that must be taken into account when treating a patient with a chronic disease such as psoriasis. Hence the importance of a personalized approach. “Just as there are psycho-oncologists, there must be psycho-dermatologists, people specialized in addressing the mental health of patients with dermatological pathologies”, affirms Alfonso.
“Our role as a patient association is to accompany, to train, to be by the side of the patient, offering those resources that the administration does not offer, and assuming that we are the center of empowerment for patients”, affirms Alfonso. “We understand that the trained and informed patient is always a patient who will have a better interaction with the healthcare professional and who will be responsible for the treatments and a better compliant.”
Ten recommendations for personalization
The document establishes a series of initiatives to achieve a personalized approach to patients with psoriasis:
1.- Provide dermatological diseases, and specifically psoriasis, with a differentiated relevance in regional health plans or strategies.
2.- increase the coordination between care levelsto guarantee a comprehensive approach to people suffering from psoriasis.
3.- Elaborate and implement specific guides of clinical practice and updated and accessible care protocols for each form of psoriasis.
4.- guarantee a further training health professionals about psoriasis and its types.
5.- Promote the creation of dermatological disease registries.
6.- Improve the access to drugs innovative and equity in it.
7.- promote the research and innovation in psoriasis.
8- Promote as much as possible active role of the patient about their disease, lifestyle and adherence to appropriate drug treatment.
9.- Ensure access of psoriatic patients to all the information.
10.- Develop public campaigns awareness and social awareness about the different clinical entities of psoriasis. Sarah Sunday