The Patient Perspective of Living With Recurrent Respiratory Papillomatosis

ABSTRACT Objective Recurrent Respiratory Papillomatosis (RRP) is caused by human papillomavirus (HPV) types 6 and 11, and afflicts children (Jo‐RRP, Juvenile‐onset RRP) and adults (Ao‐RRP, adult‐onset RRP). The study objective was to describe the disease burden of RRP from three patient‐relevant perspectives: economic, clinical, and humanistic. Methods A retrospective descriptive analysis of responses to questionnaires captured within a linked Coordination of Rare Diseases (CoRDS) and the Recurrent Respiratory Papillomatosis Foundation (RRPF) (CoRDS/RRPF) patient registries from May 1, 2019, to July 31, 2023 was performed. Categorical variables were summarized using counts and proportions and continuous variables were summarized using means (standard deviations) and medians (interquartile ranges). Results Responses from 122 participants, 55% (67/122) Jo‐RRP and 45% (55/122) Ao‐RRP, were included. Forty‐one percent (41/99) traveled more than 100 miles round trip to receive specialty care, and 61% (52/85) spent > 5% of their family income to pay for care. RRP resulted in increased absences from school [94% (17/18) for participants aged < 22] and work [85.5% (65/76) for participants aged > 22]. Moreover, 64.9% (48/74) of respondents perceived that RRP negatively impacted their careers. Feelings of isolation (70%) and depression (45.1%) were common, but less than 25% of respondents reported seeking mental health assistance. Conclusion RRP leads to clinical, financial, and psychosocial burdens. Increased public awareness regarding HPV infection of the airway is needed, as this disease is preventable through HPV vaccination. Level of Evidence 5.