20 January 2022
People living with psoriatic disease and their doctors have a different understanding of what it means to be free from psoriatic disease. Clinically, reaching a significant reduction in the area affected by skin lesions and a low score in the Dermatology Life Quality Index count as having treated psoriatic disease successfully. But remaining symptoms of the disease may cause people living with psoriatic disease not to consider themselves free from disease at all.
So what does it mean to be free from psoriatic disease? A team of European doctors, nurses, and people living with psoriatic disease set out to achieve consensus on this terminology.
People living with psoriatic disease were involved in all stages of the work, from the very beginning. Their work is now published in the Journal of the European Academy of Dermatology and Venereology.
The resulting consensus statement was:
‘“Freedom from disease” is multifaceted with five core elements. Addressing all five offers individuals with psoriasis a restoration of normality: effective, lasting treatment to manage visible and non-visible clinical symptoms, eliminating the anxiety and fear of losing control, and resulting in no impact of disease owing to treatment management, with treatment meeting the individual's needs and expectations. This reduces psychosocial burden, improving QoL and well-being, and enabling life to be lived fully with the confidence that psoriasis will not disturb it'.
“‘Freedom from disease’ represents a new treatment target in psoriasis that goes beyond traditional concepts of clinical remission and quality of life measures to include the goals of people with psoriasis” - says Valeria Corazza, president of APIAFCO (Italy) and one of the authors of the study - “this is a great achievement for people with psoriasis”. Anette Meyer, representing Deutscher Psoriasis Bund (Germany), co-author of the article, agrees with Valeria Corazza’s statement: “We reached a consensus that will improve the understanding between patient and doctor.”
Being part of an international project and a team composed of different stakeholders was a valuable experience for those involved. “Joining an international project made me learn a lot and gave me the opportunity to pass my experience as a patient to other people” – says Ludovica Donati, Community Manager at APIAFCO representing the patient community – “sharing what for me is the “freedom of disease” made me realize the importance of health and trust in science. Finally it was a good opportunity to feel like a spokesperson for the patients' needs.”