Abstract Rationale Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) is a debilitating condition causing persistent nasal congestion, loss of smell, facial pain, and frequent infections. It affects sleep, productivity, and mental health, yet remains underprioritized in healthcare. Many patients face delayed diagnosis, limited treatment, and provider unawareness, leading to unnecessary suffering and higher healthcare costs. Greater recognition, improved care pathways, and policy changes are essential. The goal of this effort was to generate a patient and caregiver informed charter that outlines patients’ rights and responsibilities when interacting with healthcare services. Methods Using the Survey Monkey Platform, 1,209 adults aged 18 or older who are caregivers (48%) or people reporting a diagnosis of CRSwNP (52%) were surveyed by presenting them with a list of 10 patient charter rights and asking them to prioritize the 5 they find to be the most important to them. This online survey attained ethics exemption in the US (BRANY, NY) and consented respondents from Argentina, Australia, Canada, Germany, Hong Kong China SAR, Morocco and the United States. Results The top priority for both patients (81%) and caregivers (82%) was “Timely and Accurate Diagnosis - Patients have the right to early and accurate diagnosis through appropriate medical evaluations, including nasal endoscopy and imaging if necessary”. The second and third priorities for around 70% of respondents was “Access to Specialist Care - Patients should have access to ENT, specialists, allergists, and immunologists for comprehensive management of CRSwNP” and for 63% “Personalized Treatment Plans and Management - Treatment should be tailored to the individual, incorporating medications (such as intranasal corticosteroids and biologics), surgery if needed, and lifestyle modifications. Additional priorities are shown in the Figure. Conclusions Using this large, multinational patient and caregiver survey, GAAPP created a patient charter aiming to help amplify chronic rhinosinusitis (CRS) and CRSwNP patient voices and ensure their needs are met. It prioritized and defined rights, expectations, and care standards, empowering patients to advocate for timely diagnosis, effective treatment, and better support. By establishing these principles, we hope to drive policy change, improve healthcare access, and enhance patient well-being and also use it as a framework for informed, patient-centered care. This abstract is funded by: GAAPP
Tal-Singer et al. (Fri,) studied this question.