RESUMO
EPOS2020 is the 4th and most recent version of the European Position Paper on Rhinosinusitis and Nasal Polyps which was first published in 2005. It aims to provide the most up to date scientifically robust information on the topic published in the literature which has been critically analysed by an international group of clinicians drawn from all disciplines dealing with these problems together with patients. The guidelines offer evidence-based recommendations and care pathways for acute and chronic rhinosinusitis in both adults and children. Management of these diseases from the patients' perspective is an important part of EPOS2020. Not only is this included in the main document but, for the first time, we have produced a separate supplement dedicated to and in collaboration with patients, EPOS4Patients, which aims to provide information in an accessible format, to answer frequently asked questions about these diseases and their treatment options as well as including useful patient resources and websites. It has never been more important for patients to be actively involved in their care. Being well informed helps you to make the best decisions together with your doctor.
RESUMO
BACKGROUND: A subset of patients with chronic rhinosinusitis with nasal polyps and asthma have non-steroidal anti-inflammatory drug exacerbated respiratory disease (N-ERD). Typically, these patients often have more difficult to treat symptoms of both chronic rhinosinusitis and asthma. They also have higher rates of revision after endoscopic sinus surgery. In this paper we aim to include the patient's perspective of living with N-ERD. METHODS: In this qualitative study, three months of posts from the Samter's Society Support Group on social media were screened and analysed. RESULTS: Thematic analysis revealed eight main themes with subthemes in relation to patient interpretations when living with NERD. Main themes included symptom severity, quality of life, biological treatment options, diet, surgery, medical treatment, lack of awareness of N-ERD, conflicts between medical professionals and the importance of the support group. CONCLUSIONS: This study adds to the growing body of evidence that many patients with N-ERD are living with uncontrolled disease which has significant impact on their quality of life. In addition, it has identified important themes that are relevant to know for doctors treating these patients. The results are also important for future research purposes. Finally, it has highlighted the importance of patient advocacy groups in providing support to patients living with chronic disease.
