Recurrent Respiratory Papillomatosis: Quality of Life Data from an International Patient Registry

<jats:sec><jats:title>Objectives</jats:title><jats:p>Quality of life studies in recurrent respiratory papillomatosis (RRP) have traditionally relied upon clinician‐designed survey instruments. This study's objective is to report quality of life outcomes from a patient‐designed questionnaire.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>Patients who provided health information and completed a quality of life questionnaire were identified from the RRPF‐CoRDS patient registry. Demographic, clinical, and quality of life measures were collected. Means and standard deviations were calculated for continuous data, and frequencies and percentages were calculated for categorical data. Outcomes for patients with juvenile‐onset RRP (JORRP) and adult‐onset RRP (AORRP) were compared using Student's <jats:italic>t</jats:italic>‐tests for continuous data and χ<jats:sup>2</jats:sup> analyses for categorical data.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Seventy‐three patients with RRP were identified (JORRP: 32; AORRP: 41). Common clinical symptoms included raspy voice (78.1%) and dyspnea (61.6%). The majority (97.3%) of patients reported feeling debilitated by their diagnosis, and 94.5% of patients reported avoiding participation in career and/or social activities due to their voice quality. Due to their RRP, 65.7% reported missing at least five work days each month. Social anxiety was reported in 79.5% of patients, though only 28.8% of the cohort reported utilizing mental health services. The median (range) lifetime number of surgeries received was 20 (1 ‐ 300). Most patients (57.5%) reported paying at least 5% of their annual income towards RRP‐related medical care.</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>RRP presents high mental and fiscal burden. Our results highlight data from a quality of life questionnaire designed by RRP patients, and may help to elucidate potential disconnects between what clinicians and RRP patients consider most impactful.</jats:p></jats:sec><jats:sec><jats:title>Level of Evidence</jats:title><jats:p>4 <jats:italic>Laryngoscope</jats:italic>, 133:1919–1926, 2023</jats:p></jats:sec>