Navigating Sexual Dysfunction in Patients With Pulmonary Fibrosis

Patients with pulmonary fibrosis (PF) who engaged in sexual activity experienced adverse events associated with PF that adversely impacted their sex life, both physically and psychologically, according to a recent study published in the European Respiratory Journal.¹

Sexual function or dysfunction is often overlooked in patients with serious diseases such as cancer. Many patients are unaware of the sexual repercussions that accompany their diagnosis or treatment. These impact not only patients’ mental health but also relationships, as both partners may find it difficult to adapt to these changes in their sex life.² Sexual activity and function are important factors contributing to many patients’ quality of life. Sexual dysfunction describes the various ways a person may have difficulty performing or satisfying sexual activities. Prior research has acknowledged physical limitations regarding sexual activity in those with PF, but not their emotional well-being. This study aims to assess patients with PF to further understand their experiences and needs.¹

A total of 2759 patients enrolled in the Canadian Registry for Pulmonary Fibrosis (CARE-PF) were included in the retrospective analysis of the study. Patients had multidisciplinary diagnoses of idiopathic PF, connective tissue disease–related interstitial lung disease (ILD), fibrotic hypersensitivity pneumonitis, or unclassifiable ILD. Of the patients enrolled in the study, 74% reported dyspnea with sexual activity.

Patient experiences were documented using the University of California, San Diego Shortness of Breast Questionnaire (UCSD-SOBQ). All of the patients who reported dyspnea had a score higher than 0 on a scale from 0 to 5, 0 being not breathless at all and 5 being maximally breathless or too breathless to perform. The mean (SD) score for all 24 questions on the UCSD-SOBQ was 1.5 (1.1).

For question 21—asking patients to rate their shortness of breath during sexual activities—the mean score was 2.2 (1.8). Those who experienced dyspnea during sexual activity were also more likely to experience it while walking (88% vs 51%) and shopping (79% vs 32%) and more likely to report being limited overall in their daily life (88% vs 49%) compared with those who did not.

The Sheffield Profile for Assessment and Referral to Care (SPARC), used to identify palliative care need according to patient-reported distress, was completed by 225 patients. Using this assessment, 173 (77%) of patients reported no distress in the past month because of PF’s impact on their sex life. The 23% who did experience distress were more likely to be younger, of the male sex, have a lower diffusing capacity of the lung for carbon monoxide (DLCO) % predicted, and have a Leicester Cough Questionnaire score indicating a worse cough.

The 140 patients who completed the prospective, multilingual online survey were younger than those in the CARE-PF. The mean (IQR) score for question 21 of the UCSD-SOBQ was 3 (2-4). For question 31 of SPARC—which assesses whether patients have been distressed or bothered by the effect of their condition on their sex life in the past month—the mean (IQR) score was 0 (0-2).

The qualitative evaluation of patient interviews recruited from the survey included 7 participants (4 men and 3 women). All of the men’s interviews reported erectile dysfunction, and many reported the complications of navigating oxygen during sexual activities.

“It’s probably one area of my life I try not to let affect me, because everything else seems to be affected. But when I’m lying in bed, I can do me. I can be who I want to be. I don’t have to worry about anything else, you know, so it’s that big, my time,” participant 1 said.

Many of them also shared their emotional state regarding their PF diagnosis and sex life. These feelings included worry and frustration around their condition and frequent guilt, shame, and embarrassment when discussing sexual activities.

“I think the only thing that would limit me from talking to a professional is if I felt I was making them uncomfortable or embarrassed,” participant 7 said. “Then I would probably hold back in the discussion.”

The study was limited by the lack of a control group of age- and sex-matched healthy adults or a comparative group with other forms of respiratory disease. Participant selection, regional differences, and limited qualitative data may introduce bias and limit generalizability. Additionally, not all PF subtypes were represented, although the findings suggest consistent patterns across the included patient groups.

“This is the largest and most comprehensive study of sexual activity and sexual function in patients with PF,” the study authors concluded. “Taken together, our findings highlight the importance of providing comprehensive care to patients with PF beyond physiological measures of lung function and the need to use standardized quality of life tools to measure sexual dysfunction in PF.”

References

1. Avitzur N, Knaub M, Thornton-Wood F, et al. The impact of pulmonary fibrosis on sex and sexual function: a multinational mixed methods study. Eur Respir J. 2026;67:2501039. doi:10.1183/13993003.01039-2025

2. Caffrey M. Sexual dysfunction from cancer is widespread—and many don’t know that before treatment, data show. AJMC^®. October 19, 2025. Accessed January 22, 2026. https://www.ajmc.com/view/sexual-dysfunction-from-cancer-is-widespread-and-many-don-t-know-that-before-treatment-data-show