M C Alanin1, T Laidlaw2,3, The Samter's Society, C Hopkins1,4. 1. Guy's Hospital, London, United Kingdom. 2. Translational Research in Allergy, Harvard Medical School, Boston, MA, USA. 3. Brigham and Women's Hospital, Boston, MA, USA. 4. King's College London, United Kingdom.
Abstract
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.
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.