By Michelle Greenwood
The Irish Skin Foundation are delighted to collaborate with the International Federation of Psoriasis Associations (IFPA) and Novartis on the launch of Psoriasis and Beyond: The Global Psoriatic Disease Survey, a research initiative to uncover what life is like for people living with moderate-to-severe psoriatic disease—psoriasis or psoriatic arthritis—around the world.
The primary research objective of the survey is to assess patients’ understanding of psoriasis and psoriatic arthritis as part of a systemic disease and describe the humanistic and physical burden of living with the condition. This online global survey aims to recruit 5,000 adults with psoriasis and psoriatic arthritis in over 25 countries.
What is psoriasis?
Psoriasis is a chronic immune-mediated inflammatory skin disorder involving the skin and nails, affecting at least 100 million people worldwide; a 2015 report on the Burden of Psoriasis in Ireland estimated a prevalence of 73,000. Psoriasis can appear at any age, and affects males and females equally. There are different types, but the most common form is plaque psoriasis which affects approximately 90% of people with this skin condition.
Psoriasis is just not a skin disease, and there are a number of other conditions that have been associated with psoriasis including psoriatic arthritis.
What is psoriatic arthritis?
Psoriatic arthritis is a chronic inflammatory form of arthritis and is closely associated with psoriasis, that can cause pain, swelling and damage to joints. The prevalence of psoriatic arthritis is estimated to be between 0.3 -1% of the general population and amongst people with psoriasis, studies have indicated prevalence rates ranging between 6% and 42%. For the majority of patients, psoriasis develops first, commonly around 10 years before psoriatic arthritis. Although, it has been reported that in 15% of cases, individuals may develop skin and joint problems simultaneously or joints problems before psoriasis.
How will participating in the survey help?
The Psoriasis and Beyond: The Global Psoriatic Disease Survey is a research initiative that will assess how people living with moderate-to-severe psoriasis and psoriatic arthritis understand and experience their condition. It will generate patient-based evidence which will help to:
Prompt discussions on unmet needs and improve quality of life and disease management.
Raise awareness about the link between skin and joints in some people living with psoriasis.
Support decision and policy makers implement recommendations made in the WHO report on Psoriasis 2016.
Areas covered within the survey include some of the following: physical and psychological burden, impact on quality of life, treatment satisfaction and expectations, direct/indirect costs and skills and confidence to manage your condition.
This a great opportunity to assist in providing real-life experiences of living and managing psoriasis and psoriatic arthritis into a robust worldwide piece of research.