Living with chronic rhinosinusitis with nasal polyposis (CRSwNP): an experience to amplify Italian patients’ voices

Abstract Background Chronic rhinosinusitis with nasal polyps (CRSwNP) significantly impacts patients’ quality of life, yet there is a notable lack of studies addressing the disease burden and patients’ perspectives compared to other conditions such as asthma and allergies. This project aimed to gather insights from both patients living with CRSwNP and healthcare professionals (HCPs) involved in its management, with the goal of better understanding their experiences and identifying shared unmet needs and expectations. Method Twelve CRSwNP patients participated in2 focus groups (open-ended questions) facilitated by a moderator. The insights gathered were presented to an expert board comprising HCPs and expert patients, both of whom are members of the PAG. Patients involved in the expert board enriched the qualitative data collection providing narratives of their personal experience. Results A total of 24 patients with CRSwNP participated in the analysis, 124 qualitative insights, distinct observations, comments or experiences related to their conditions, were gathered. The main priorities expressed were to decrease invasive procedures; avoid chronicity/reduce relapses; and create more opportunities for patients to be heard. Conclusion Participants expressed expectations that extended beyond disease management, emphasizing the importance of their active involvement in shaping healthcare strategies. This project highlights the critical need to actively listen to the experiences and unmet needs of both patients and HCPs, integrating their perspectives into healthcare strategies to deliver practical, patient-centered improvements in the management of CRSwNP.