Response to letter to the editor regarding “Sinonasal quality of life in primary ciliary dyskinesia”

Abstract

To the Editor,We appreciate the thoughtful response to our recent article, "Comparison of sinonasal quality of life in PCD and CF patients." 1 While our study provides limited data in pediatric primary ciliary dyskinesia (PCD) (n = 3), the addition of your observations supports the differences between PCD and cystic fibrosis (CF) evident in our adult cohorts. We agree that special consideration should be taken when evaluating sinonasal quality of life (QoL) in the pediatric PCD population. Children may experience a more severe impact on their QoL compared to adults with PCD. However, there are challenges associated with conducting research in this population, and we appreciate your efforts in providing additional experience and data regarding pediatric PCD and sinonasal QoL.While we also use these surveys, the Rhinosinusitis Disability Index and the Sinonasal Outcome Test-20 have not been specifically validated for use in the pediatric population, unlike the Sinus and Nasal Quality of Life Survey (SN-5). However, none of these tools have been validated for PCD-related chronic rhinosinusitis. Development and validation of patient-reported outcome measures will require multicenter collaborative studies, given the rarity of this disease. 2,3 We appreciate your additional contribution to the discussion on sinonasal QoL in pediatric PCD patients. Your insights underscore the importance of further research in this area, and we share your commitment to improve our understanding of the unique challenges faced by this patient population. We look forward to continued collaboration and dialogue to advance our collective knowledge on this important topic.Thank you once again for your thoughtful correspondence.