Background Sex is an important part of life for many adults, yet sexual function may be impacted by chronic respiratory diseases such as pulmonary fibrosis (PF). This multinational study sought to characterize the impact of PF on sex and sexual function, using mixed quantitative and qualitative methodology. Methods Patients were retrospectively included from a prospective registry and prospective clinical cohort if they had completed UCSD-SOBQ or SPARC questionnaire, respectively. An online multi-lingual survey used the Changes in Sexual Function Questionnaire (CSFQ) to assess sexual dysfunction, and qualitative evaluation of individual patient interviews was conducted using thematic analysis. Results Dyspnea with sexual activity affected 2,054/2,759 (74%) of registry patients, associated with male sex, lower FVC%, lower DLCO%, and worse cough. Distress due to the effect of PF on their sex life was reported in 52/225 (23%) of the clinical cohort, associated with younger age, male sex, lower DLCO%, and worse cough. Sexual dysfunction was common, affecting 56/67 (83%) of female and 63/73 (86%) male survey respondents. Qualitative analysis of patient interviews identified several themes including sex life limitations, changes in inter-personal relationships, quality of life, and emotions. All patients wanted to discuss sex with trusted healthcare providers. Conclusion In this multinational study, patients with PF reported engaging in sex and sexual activities but were adversely impacted by the effect of PF on sex life, with both physical and psychological limitations. Sexual dysfunction was common, driven by multiple disease domains. Sexual health appears to be an important component of comprehensive patient care.

SRJ has grants or contracts from Nottingham NIHR BRC, Medical Research Council, LifeArc, LAM Action, La Morato de TV3, and Ferrer. SRJ also serves as a trustee of LAM Action. RGJ has grants or contracts from AstraZeneca, Biogen, Galecto, GSK, Nordic Bioscience, Redx, and Pliant, with all payments going to his institutions. GJ has also served as a consultant to Bristol Myers Squibb, Chiesi, Daewoong, Veracyte, Resolution Therapeutics, and Pliant, has received payment or honoraria for lectures, presentations, speaker bureaus, manuscript writing, or educational events from Boehringer Ingelheim, Chiesi, Roche, PatientMPower, and AstraZeneca, has participated on a data safety monitoring board or advisory board for Boehringer Ingelheim, Galapagos, and Vicore, and has an unpaid role in an advisory board at NuMedii. GJ is also a trustee of Action for Pulmonary Fibrosis. CJR reports a relationship with Boehringer Ingelheim Canada Ltd that includes: consulting or advisory fees, funding grants, and speaking and lecturing fees, and reports consultancy fees/honoraria from Hoffman-La Roche, Veracyte, AstraZeneca, Pliant Therapeutics, Trevi Therapeutics, and Avalyn Pharmaceuticals. IDS reports supporting fees from European Lung Foundation, and reports participation on PatientMPower Advisory Board. KAJ reports grants from the Three Lakes Foundation, and personal fees from Boehringer- Ingelheim, Hoffman-La Roche, Pliant Therapeutics, Thyron, Brainomix, Abbvie, and the Three Lakes Foundation. The reminder of the authors declare no competing interests.

The Canadian Registry for Pulmonary Fibrosis is sponsored by Boehringer Ingelheim, but had no input on any aspect of this study

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