Nasal Polyp Syndrome: A Patient-Centred Term for CRSwNP by EUFOREA
During the EUFOREA's first annual Global Chronic Rhinosinusitis with Nasal Polyps Awareness Day on April 20, 2022, in the European Parliament in Brussels (Figure 1A or below first figure) a moderator and a panel consisting of global experts in CRSwNP and patient representatives from EUFOREA's patient advisory board (PAB) took part in an informal debate on the burden of CRSwNP (Figure 1B or below first figure) on the nature of the complex names “CRSwNP” or “Chronic Rhinosinusitis with Nasal Polyps’ for patients, for health policymakers and physicians. Discussions among members of EUFOREA's patient advisory board revealed the challenges faced by patients with CRSwNP as they not only navigate conversations with family, friends and peers about the burden of their disease and its associated comorbidities but also as they seek out reliable information about their disease online to play an active and empowered role in as they discuss treatment options with their healthcare team. The difficult and inconsistent naming used for CRSwNP by patients and healthcare professionals alike not only exacerbates patients” reported perception of a lack of resources about their disease but also hinders patients’ involvement in shared decision-making with their healthcare team.
Authors: Thijs Teeling, Chabha Djouder, Henk Laurens, Jeff Preyra, Catherine Shire, Elizabeth Van Staeyen, Diego M. Conti, Glenis Scadding and Peter Hellings
