Abstract
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 characterise the impact of PF on sex and sexual function, using mixed quantitative and qualitative methodology.
Methods
We analysed data from a patient registry, a clinical study, an online survey and patient interviews to accomplish our objective and develop a conceptual framework for describing the effects of PF on sex-related quality of life. These cohorts used three distinct questionnaires, University of California, San Diego Shortness of Breath Questionnaire (UCSD-SOBQ), Sheffield Profile for Assessment and Referral to Care (SPARC) questionnaire, and Changes in Sexual Function Questionnaire (CSFQ), to assess sexual dysfunction, respectively. Individual patient interviews were conducted and qualitatively evaluated using thematic analysis.
Results
Dyspnoea with sexual activity affected 2054/2759 (74%) of registry patients, associated with male sex, lower forced vital capacity (FVC) % predicted, lower diffusing capacity of the lung for carbon monoxide (DLCO) % predicted 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 % predicted and worse cough. Sexual dysfunction was common, affecting 56/67 (83%) female and 63/73 (86%) male survey respondents. Qualitative analysis of patient interviews identified several themes, including sex life limitations, changes in interpersonal relationships and quality of life. All patients wanted to discuss sex with trusted healthcare providers.
Conclusions
In this multinational study, patients with PF reported engaging in sex and sexual activities but were adversely impacted by the effect of PF on their 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.
Shareable abstract
Sexual dysfunction is common in pulmonary fibrosis, and is impacted by multiple pulmonary fibrosis disease manifestations https://bit.ly/4mnAzpj
Introduction
Pulmonary fibrosis (PF) encompasses a heterogeneous group of lung diseases often associated with high symptom burden, major morbidity and early mortality. PF usually affects adults, with increasing incidence and prevalence with older age, and relatively equal distribution across sexes and gender. Patients with PF frequently experience exercise limitation and symptoms, including exertional dyspnoea, cough and fatigue [1, 2]. PF is also associated with high comorbidity burden, including cardiovascular disease, metabolic syndrome, multi-organ fibrosis, and the negative psychological impacts of depression and anxiety. These factors result in PF patients experiencing reduced overall and health-related quality of life [3].
Sexual activity and sexual function are important components of quality of life for many adults [4]. Sexual function encompasses multiple components such as desire, arousal, orgasm and satisfaction, among others. Sexual dysfunction is defined by the World Health Organization as the various ways in which adults may have difficulty experiencing personally satisfying sexual activities, and this is influenced by psychological health, medications and comorbidities [5]. Large population-based studies have shown that most older adults engage in sexual activity, with sexual dysfunction affecting 33–50% [4, 6]. Patients with respiratory disease experience symptoms and consequences that could affect sexual function, yet little is known about sexual dysfunction in pulmonary conditions. Small studies suggest that sexual dysfunction is common in patients with pulmonary hypertension [7] and COPD [8, 9]. In PF, most studies have focused on physical consequences of erectile dysfunction in men or pelvic floor dysfunction in women, without assessing emotional wellbeing [10–12]. This area warrants study, as PF patients identify sexual function as a priority for research and assessment in clinical care [3, 13].
The objective of this multinational study was to characterise the impact of PF on sexual function in a large group of affected adult patients, using mixed quantitative and qualitative methodology. We sought to characterise associations of sexual dysfunction with other components of PF such as disease severity and oxygen use, and to understand the experience and needs of people living with PF.
Methods
The study used a mixed methods approach with four data sources (figure 1): retrospective analysis of a multisite registry and a multisite clinical study, a prospective multilingual online survey, and qualitative evaluation of patient interviews recruited from the survey.
FIGURE 1.
Visual representation of the four unique study cohorts and their outcome measures. CARE-PF: Canadian Registry for Pulmonary Fibrosis; PF: pulmonary fibrosis; UCSD-SOBQ: University of California, San Diego Shortness of Breath Questionnaire; PROFILE: Prospective Observation of Fibrosis in Lung Clinical Endpoints; IPF: idiopathic pulmonary fibrosis; NSIP: non-specific interstitial pneumonia; SPARC: Sheffield Profile for Assessment and Referral to Care; CSFQ: Changes in Sexual Function Questionnaire.
Study populations
Patients with fibrotic interstitial lung disease (ILD) enrolled in the multicentre Canadian Registry for Pulmonary Fibrosis (CARE-PF) were included if they completed the University of California, San Diego Shortness of Breath Questionnaire (UCSD-SOBQ) at enrolment [14]. Details of the CARE-PF cohort were previously described [15]. Included patients had multidisciplinary diagnoses of idiopathic pulmonary fibrosis (IPF), connective tissue disease-related ILD, fibrotic hypersensitivity pneumonitis or unclassifiable ILD. Age, sex, smoking history, contemporaneous (within 1 year) forced vital capacity (FVC) % predicted and diffusing capacity of the lung for carbon monoxide (DLCO) % predicted, and patient-recorded outcome measures including the cough visual analogue scale (VAS) [16] were extracted. Participants from the Prospective Observation of Fibrosis in Lung Clinical Endpoints (PROFILE) Central England cohort were included if they completed the Sheffield Profile for Assessment and Referral to Care (SPARC) questionnaire as part of a substudy [17]. The PROFILE cohort has been previously described, and includes participants diagnosed with IPF and idiopathic fibrotic non-specific interstitial pneumonia [18]. Baseline demographics, patient-reported outcome measures including the St George's Research Questionnaire (SGRQ) [19] and Leicester Cough Questionnaire (LCQ) [20], and lung function were ascertained.
The online survey was distributed through multiple patient support/advocacy group e-mail lists (through the study team's professional contacts), newsletters and via social media posts. The online survey was available in four languages, English, French, Dutch and Spanish, and was disseminated internationally to maximise representation and participation. The total number of patients reached by survey distribution cannot be determined but is assumed to be at least several hundred. Patients were invited to participate if they were adults (aged ≥18 years) with self-reported PF and able to complete the survey in one of the four available languages. The survey was anonymous, but participants could provide their e-mail address if willing to be contacted for subsequent individual interviews.
Exposure and outcome measures
Patients enrolled in CARE-PF completed the UCSD-SOBQ, a validated 24-item questionnaire that quantifies dyspnoea in patients with respiratory disease. 21 questions enquired about dyspnoea during specific activities, with options to choose 0 (not breathless at all) to 5 (maximally breathless or too breathless to perform). Question 21 asks “When I do, or if I were to do, sexual activities, I would rate my shortness of breath as …”, with scoring options from 0 to 5. Patients enrolled in the PROFILE Central England cohort completed SPARC, a 45-item tool developed to identify palliative care needs, and to distinguish a restricted set of items that could inform prognosis and clinical decisions in IPF, according to patient-reported distress [17, 18]. Question 31 asks “In the past month, have you been distressed or bothered by the effect of your condition on your sexual life?”, with responses of 0 (not at all) to 3 (very much). These two study populations are distinct with separate patient-reported outcome measures.
The online survey (supplementary material) collected demographics, type of PF and severity, including oxygen use and modified Medical Research Council (mMRC) dyspnoea score, and Question 21 from UCSD-SOBQ and Question 31 from SPARC [21, 22]. The remainder was based on the Changes in Sexual Functioning Questionnaire (CSFQ), a sexual function survey validated in multiple languages for males and females, with a threshold score for sexual dysfunction [23]. Participants were provided an introductory paragraph as per the CSFQ protocol (supplementary material), defining sexual activity as sexual intercourse, masturbation, sexual fantasies and other sexual activities. This questionnaire was selected due to ease of distribution with only 14 questions, ability to assess both sexes with the same questionnaire and because the questions were intended to be non-intrusive to facilitate survey uptake. The CSFQ was validated in all languages used for this study. Participants had the option to select non-binary gender and, if selected, were asked to answer the male or female version based on their sexual organs. Analysis included participants who completed all survey questions. Sexual dysfunction scores were calculated using the sum of 14 CSFQ answers for a total score, with cut-off criteria as per the CSFQ protocol (<47 for males and <41 for females).
Qualitative interviews and thematic analysis
Participants who provided their e-mail address were contacted by one team member (N. Avitzur) for participation in an optional 30-min, one-on-one virtual interview. Participants who responded to the e-mail and consented to having an interview were contacted. No patients were excluded unless they decided not to participate. Interviews were conducted in English only, thus all participants needed verbal fluency in the English language. Patients did not identify themselves by name in the interviews, and all participants agreed to recording and transcription using Zoom videoconferencing (Zoom, San Jose, CA, USA). N. Avitzur conducted all interviews using an a priori structured guide of open-ended questions and prompts (supplementary material). Interviews were transcribed verbatim using Zoom and edited by the interviewer (N. Avitzur) for any discrepancies. Recruitment aimed for 10–15 participants or until theme saturation was achieved. Analysis was performed using the methodological principles of grounded theory [24]. Two investigators (N. Avitzur and M. Knaub) analysed and coded transcripts independently, using NVivo version 14 (https://lumivero.com). Discrepancies were resolved by a third member of the study team (K.A. Johannson). After analysing seven interviews independently, a codebook was developed and reviewed by N. Avitzur and M. Knaub. As determined by all three team members, theme saturation was achieved following seven interviews. Transcripts were coded a second time using the codebook, with agreement established. Direct quotes were extracted to present the themes.
Statistical analysis
Study populations in the registries and survey were characterised using descriptive statistics including mean with standard deviation or median with interquartile range (IQR) where appropriate. UCSD-SOBQ and SPARC scores were evaluated as binary (none versus any dyspnoea or distress, respectively). The Chi-squared test, t-test or Wilcoxon rank-sum test was performed to test the relationship between presence of sexual dysfunction and categorical variables (gender, PF subtype, smoking status, oxygen desaturation and dyspnoea severity), normally distributed variables (FVC % predicted, DLCO % predicted and age) and non-normally distributed variables (UCSD-SOBQ total scores, SGRQ, LCQ and cough VAS), respectively. Ordinal logistic regression evaluated independent associations between dyspnoea scores and age, sex, FVC % predicted, DLCO % predicted, type of PF and cough VAS in CARE-PF participants. Logistic regression was used to model PROFILE participants according to the binary outcome of no distress versus any distress. In the PROFILE cohort logistic regression evaluated associations between presence of distress and age, sex, IPF diagnosis, FVC % predicted, DLCO % predicted and LCQ score.
Results
Dyspnoea with sexual activity
A total of 2759 CARE-PF patients were included and are described in table 1. A large majority of patients 2054 (74%) reported dyspnoea with sexual activity (score >0). The score distribution for Question 21 is presented in figure 2a. Out of a score of 5, the mean±sd score for all UCSD-SOBQ questions was 1.5±1.1 and for Question 21 was 2.2±1.8. When anchoring to other questions in the UCSD-SOBQ, those who had dyspnoea with sexual activity were more likely to report dyspnoea with walking (88% versus 51%), shopping (79% versus 32%) and were more likely to report being limited by dyspnoea in their daily life (88% versus 49%). In adjusted analyses, dyspnoea was more common in males, in those who use oxygen, with lower lung function and with higher cough VAS (table 2). Probabilities of response of 0 or 5 for Question 21 across FVC % predicted and DLCO % predicted are presented in figure 3.
TABLE 1.
Canadian Registry for Pulmonary Fibrosis (CARE-PF) and Prospective Observation of Fibrosis in Lung Clinical Endpoints (PROFILE) patient demographics
| CARE-PF | PROFILE | |||||
|---|---|---|---|---|---|---|
| Dyspnoea with sexual activity (n=2054) | No dyspnoea with sexual activity (n=705) | p-value | Distress due to effect of PF on sex life (n=52) | No distress due to effect of PF on sex life (n=173) | p-value | |
| Age (years) | 64±12 | 67±11 | <0.001 | 67±10 | 73±8 | <0.001 |
| Sex | <0.001 | 0.014 | ||||
| Female | 901 (44) | 381 (54) | 6 (12) | 49 (28) | ||
| Male | 1152 (56) | 323 (46) | 46 (88) | 124 (72) | ||
| Oxygen users | 568 (30) | 58 (9) | <0.001 | |||
| Oxygen desaturation | 539 (75) | 153 (63) | 0.001 | 8 (20) | 26 (23) | 0.675 |
| Type of PF | 0.739 | 0.769 | ||||
| IPF | 635 (31) | 231 (33) | 43 (83) | 146 (84) | ||
| CTD-ILD | 833 (41) | 286 (40) | ||||
| Fibrotic HP | 195 (9) | 64 (9) | ||||
| Unclassifiable ILD | 391 (19) | 124 (18) | ||||
| Idiopathic NSIP | 9 (17) | 27 (16) | ||||
| UCSD-SOBQ score | 45.4±26 | 15.7±16 | <0.001 | |||
| FVC % pred | 72.4±20 | 82.4±19 | <0.001 | 79.5±20 | 82.8±19 | 0.281 |
| DLCO % pred | 55.3±19 | 62.7±19 | <0.001 | 43.0±15 | 50.6±16 | 0.006 |
| Cough VAS | 40.8±24 | 31.0±23 | <0.001 | |||
| LCQ score | 14.0±4 | 16.6±4 | <0.001 | |||
Data are presented as mean±sd or n (%), unless otherwise stated; percentages are based on non-missing data. PF: pulmonary fibrosis; IPF: idiopathic pulmonary fibrosis; ILD: interstitial lung disease; CTD-ILD: connective tissue disease-related ILD; HP: hypersensitivity pneumonitis; NSIP: non-specific interstitial pneumonia; UCSD-SOBQ: University of California, San Diego Shortness of Breath Questionnaire; FVC: forced vital capacity; DLCO: diffusing capacity of the lung for carbon monoxide; VAS: visual analogue scale; LCQ: Leicester Cough Questionnaire. Dyspnoea based on answer ≥1 on UCSD-SOBQ Question 21. Distress based on answer ≥1 on SPARC Question 31. Median (interquartile range) score for UCSD-SOBQ Question 21 was 2 (0–4) and for Sheffield Profile for Assessment and Referral to Care (SPARC) Question 31 was 0 (0–1). Bold indicates statistically significant (p<0.05).
FIGURE 2.
a, b) Distribution of participant answers to University of California, San Diego Shortness of Breath Questionnaire (UCSD-SOBQ) Question 21 in the a) Canadian Registry for Pulmonary Fibrosis (CARE-PF) cohort and b) international survey. UCSD-SOBQ Question 21: “When I do, or if I were to do, sexual activities, I would rate my shortness of breath as …”, with responses of 0 (not breathless at all) to 5 (maximally breathless or too breathless to perform). c, d) Distribution of participant answers to Sheffield Profile for Assessment and Referral to Care (SPARC) Question 31 in the c) Prospective Observation of Fibrosis in Lung Clinical Endpoints (PROFILE) cohort and d) international survey. SPARC Question 31: “In the past month, have you been distressed or bothered by the effect of your condition on your sexual life?”, with responses of 0 (not at all) to 3 (very much).
TABLE 2.
Logistic regression for University of California, San Diego Shortness of Breath Questionnaire (UCSD-SOBQ) Question 21 and Sheffield Profile for Assessment and Referral to Care (SPARC) Question 31 and clinical measures
| Unadjusted | Adjusted | |||
|---|---|---|---|---|
| OR (95% CI) | p-value | OR (95% CI) | p-value | |
| CARE-PF: UCSD-SOBQ# | ||||
| Age | 1.00 (0.99–1.00) | 0.227 | 1.00 (0.99–1.01) | 0.832 |
| Sex (male) | 1.28 (1.12–1.46) | <0.001 | 1.21 (1.05–1.40) | 0.009 |
| Type of PF | ||||
| IPF | Reference | Reference | ||
| CTD-ILD | 0.89 (0.76–1.04) | 0.144 | 0.97 (0.81–1.16) | 0.728 |
| Fibrotic HP | 1.21 (0.94–1.55) | 0.142 | 1.20 (0.93–1.56) | 0.160 |
| Unclassifiable ILD | 1.10 (0.91–1.34) | 0.319 | 1.28 (1.05–1.57) | 0.016 |
| FVC % pred | 0.97 (0.97–0.98) | <0.001 | 0.97 (0.97–0.97) | <0.001 |
| DLCO % pred | 0.97 (0.97–0.98) | <0.001 | 0.98 (0.97–0.98) | <0.001 |
| Cough VAS | 1.02 (1.02–1.03) | <0.001 | 1.02 (1.01–1.02) | <0.001 |
| PROFILE: SPARC ¶ | ||||
| Age | 0.92 (0.89–0.96) | <0.001 | 0.91 (0.88–0.95) | <0.001 |
| Sex (male) | 3.03 (1.22–7.55) | 0.017 | 3.11 (1.19–8.17) | 0.021 |
| IPF diagnosis | 0.88 (0.39–2.02) | 0.769 | 1.28 (0.49–3.35) | 0.620 |
| FVC % pred | 0.99 (0.98–1.01) | 0.281 | 0.99 (0.97–1.01) | 0.366 |
| DLCO % pred | 0.97 (0.94–0.99) | 0.008 | 0.95 (0.92–0.98) | 0.003 |
| LCQ score | 0.86 (0.80–0.93) | <0.001 | 0.87 (0.80–0.95) | 0.001 |
CARE-PF: Canadian Registry for Pulmonary Fibrosis; PF: pulmonary fibrosis; IPF: idiopathic pulmonary fibrosis; ILD: interstitial lung disease; CTD-ILD: connective tissue disease-related ILD; HP: hypersensitivity pneumonitis; FVC: forced vital capacity; DLCO: diffusing capacity of the lung for carbon monoxide; VAS: visual analogue scale; PROFILE: Prospective Observation of Fibrosis in Lung Clinical Endpoints; LCQ: Leicester Cough Questionnaire. #: adjusted for age, sex, FVC % predicted and PF type; ¶: adjusted for age, sex, FVC % predicted and IPF diagnosis. Bold indicates statistically significant (p<0.05).
FIGURE 3.
Probability of dyspnoea relative to a) forced vital capacity (FVC) % predicted and b) diffusing capacity of the lung for carbon monoxide (DLCO) % predicted. Probability of distress due to effect of patient condition on sex life relative to c) FVC % predicted and d) DLCO % predicted. Models adjusted for age, sex and diagnosis.
Distress due to effect of PF on sex life
A total of 225 PROFILE participants had complete SPARC responses (table 1). Most patients (173 (77%)) reported no distress in the past month because of PF on their sex life (score 0), while 52 (23%) reported some distress (score >0) (figure 2c). In adjusted analyses, distress was more common with younger age, male sex, lower DLCO % predicted and LCQ indicating worse cough (table 2). The probability of reporting any distress across FVC % predicted and DLCO % predicted is presented in figure 3. In analysis of other SPARC questions, there was a correlation between higher scores of distress due to the effect of PF on sex life with higher scores of being distressed or bothered by dyspnoea (p<0.001), yet there was no correlation with higher dyspnoea mMRC scores (p=0.28).
Online international survey
The survey was disseminated broadly, thus response rate cannot be determined. The survey was completed by 140 participants: 64 in English, 37 in Dutch, 31 in Spanish and eight in French (table 3). Survey participants were younger than those in the CARE-PF and PROFILE cohorts, and a higher percentage used oxygen. The median (IQR) score for UCSD-SOBQ Question 21 was 3 (2–4) and for SPARC Question 31 was 0 (0–2), which were higher compared with registry scores (figure 2b and d). Sexual dysfunction was common, affecting 56/67 (83%) females and 63/73 (86%) males (table 3), consistent across all languages (supplementary material). Similarly, dysfunction was equally impacted across all domains of the CSFQ (pleasure, desire, arousal and orgasm). Participants with sexual dysfunction were older (mean age 63.4 versus 52.7 years), but with lower mMRC dyspnoea, compared with those without sexual dysfunction.
TABLE 3.
International survey results (n=140)
| Sex | |
| Female | 67 (48) |
| Male | 73 (52) |
| Age (years) | 62±13 |
| Type of pulmonary fibrosis | |
| Idiopathic pulmonary fibrosis | 82 (59) |
| Connective tissue disease-related | 25 (18) |
| Exposure-related | 12 (9) |
| Other# | 21 (15) |
| Continent | |
| North America | 80 (57) |
| Europe | 60 (43) |
| Oxygen use | |
| Yes | 68 (49) |
| No | 72 (51) |
| UCSD-SOBQ Question 21 score | 3 (2–4) |
| SPARC Question 31 score | 0 (0–2) |
| CSFQ score | |
| Males (n=73) | 36±11 |
| Sexual dysfunction¶ | 63 (86) |
| Females (n=67) | 30±11 |
| Sexual dysfunction¶ | 56 (83) |
Data are presented as n (%), mean±sd or median (interquartile range). One participant self-identified as non-binary and completed the survey for males. UCSD-SOBQ: University of California, San Diego Shortness of Breath Questionnaire; SPARC: Sheffield Profile for Assessment and Referral to Care; CSFQ: Changes in Sexual Function Questionnaire. #: including sarcoidosis, desquamative interstitial pneumonia, unspecified, non-specific interstitial pneumonia or patient responded “unsure”. ¶: sexual dysfunction determined if CSFQ total score <41 for females and <47 for males (lower scores indicate more sexual dysfunction).
Qualitative analysis
12 patients agreed to be contacted, and nine agreed to schedule interviews. Seven participants (four males and three females) attended their scheduled interviews. Due to small numbers and to maintain participant confidentiality, further demographic information is not reported. Five major themes emerged throughout the interviews, including sexual activity while living with PF, emotions, research, relationships and quality of life (figure 4). A full codebook can be found in the supplementary material.
FIGURE 4.
Qualitative analysis themes. Quotes were extracted from patient interviews. PF: pulmonary fibrosis.
Sex with PF
Participants discussed their current sex life, including symptoms with sexual activity such as dyspnoea, cough and fatigue. All males experienced erectile dysfunction, often noted by them around the time of their PF diagnosis. Participants described prioritising their sex life, and how they have adapted in the context of PF. For example:
“It's probably one area of my life I try not to let affect, because everything else seems to be affected. But when I'm laying 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)
Participants using oxygen described various challenges, including cumbersomeness of using oxygen during sexual activity, and oxygen influence on their self-image and shame (figure 4). Few participants noted a direct impact since their diagnosis, e.g.
“Definitely the sexual acts that we engage in have changed, I think, with the diagnosis and the progression.” (Participant 3)
Emotions
Participants shared various perspectives around emotional states related to PF and their sex life, including worry and frustration around their condition, as well as frequent embarrassment, guilt and shame in discussing sexual activity. One participant shared:
“I think the only thing that would limit me talking to a professional, is if I felt I was making them uncomfortable, or embarrassed. Then I would probably hold back in the discussion.” (Participant 7)
Relationships
Participants described the impact of PF and their sex life on interpersonal relationships. Two participants identified as LGBTQ+ and acknowledged that most research in PF does not include LGBTQ+ perspectives. Multiple participants had concerns around their sex life due to romantic relationship challenges or their partner's worry of injuring them during sexual activities. All participants indicated they had never discussed sexual function with any healthcare provider, but they were all interested in doing so, if they felt they had a strong relationship founded on trust. For example, one participant stated:
“All my doctors have seen the worst of me. The worst that my body can put me through. I'm very comfortable with all of them.” (Participant 5)
Participants were comfortable having these discussions with their pulmonologist, family physician, nurse practitioner or PF educator. One participant brought up considerations around timing of these conversation in the context of a new PF diagnosis:
“Not right away. You know I was scared to death when I got this diagnosis … So the last thing I'm thinking about is sex at that point.” (Participant 2)
Quality of life
Participants shared various consequences of PF that impact their quality of life, and therefore also their sex life. These included symptom progression, comorbidities and medication side-effects. Regarding antifibrotics, one participant said:
“The treatment is a horrible little pill called [sic antifibrotic], and two of the side-effects are vomiting and diarrhoea. So there will be occasions … we may have felt in the mood for intimacy. The pill has decided that it's going to make me violently sick. So you have to put your sexual activity on the sidelines and wait until that side of life passes.” (Participant 7)
Participants discussed participation in pulmonary rehabilitation, but only one reported a session on sexual function and intimacy as part of the curriculum.
Research
A recurring theme was participants’ desire and experience in engaging in research and learning around PF and sexual function. All participants valued the importance of research engagement, knowledge distribution and the ability to find new research related to PF. Some commented that they would find further research on sexual function in PF valuable, particularly the link between erectile dysfunction and PF. Participants expressed enthusiasm around the possibility of improving patients’ sexual function and, in turn, their quality of life.
Incorporating the aforementioned results, we have created a conceptual framework of the impact of PF on sexual function and quality of life (figure 5).
FIGURE 5.
Conceptual framework of the impact of pulmonary fibrosis (PF) disease manifestations on sexual function and quality of life. Manifestations of PF due to physical, psychological and PF therapies impact domains of sexual function, which in turn lead to impacts on sex and general quality of life. These can serve as potential targets for intervention.
Discussion
In this multinational mixed methods study, we demonstrated that PF impacts sexual activity and sexual function of affected individuals across multiple domains, including physical symptoms, psychological and PF-related therapies, such as oxygen use and medications (figure 5). Patients with PF reported engaging in sexual activities, even in advanced stages of disease with low lung function and while requiring supplemental oxygen. Patients expressed the desire to have resources for support and education in the context of their disease, and for future work to include sexual function as an important aspect of quality of life.
The first study of sexual dysfunction in PF patients studied eight men with IPF in 1984, showing that erectile dysfunction was common and reporting an association of low serum testosterone with hypoxaemia [25]. Additional small studies reported a high frequency of sexual dysfunction in ILD, including a recent single-centre study of 93 patients with sarcoidosis reporting sexual dysfunction in 67% of women and erectile dysfunction in 37% of men [10–12]. These studies have typically included one gender/sex, reported on a single centre with small samples sizes and focused primarily on physiological aspects. Our findings enhance these data with greater international generalisability, demonstrate associations with clinical outcomes, and present patient voices and priorities, thus providing novel insights into sexual dysfunction in patients with chronic pulmonary disease. Importantly, this is the first study of sexual activity and sexual function to have explicitly included LGBTQ+ patients living with PF.
Sexual dysfunction can occur in older individuals and those with other respiratory diseases. A US-based study of 3000 community-dwelling older adults found that ∼50% of sexually active adults had at least one bothersome symptom with sexual activity [4]. Dyspnoea is associated with reduced sexual activity, with 10% of community-dwelling men who experienced reduced sexual activity reporting dyspnoea during sex, and 52% of patients with pulmonary hypertension reporting dyspnoea during sex, compared with 74% of our CARE-PF cohort [7, 26]. The frequency of sexual dysfunction in respiratory conditions ranges from 42% to 90% in pulmonary hypertension and from 68% to 80% in COPD [7, 8]. This is similar to the 83–86% seen in our population, but these studies used different surveys to assess dysfunction and had smaller sample sizes. The CSFQ has been studied in other lung diseases, demonstrating sexual dysfunction in 59% of males and 42% of females with end-stage lung disease listed for lung transplant, and in 17% of females with obstructive sleep apnoea [27, 28]. In studies that included healthy controls, sexual dysfunction affected 9–33% [28–30]. Our study demonstrated worse mean CSFQ scores and more sexual dysfunction in both males and females compared with those studies, suggesting that sexual dysfunction is more common in PF. While we lack a directly comparative control population, our findings indicate that people living with PF are substantially impacted by its effects on their sex life.
Both Canadian and UK cohort data revealed that PF impacts patients’ symptoms with, and emotions around, sexual function. Unsurprisingly, increased dyspnoea with sexual activity was associated with lower lung function and cough. However, importantly, sex-associated distress was associated with lower DLCO % predicted and increased cough. In both cohorts, patients with either sex-associated dyspnoea or distress were younger than those without. This suggests that disease severity and symptom burden negatively impact patients’ sex lives via physical domains and the emotional wellbeing associated with sexual activity. Whether interventions that improve PF-related symptoms such as cough or lung function can translate into improved sexual function warrants further study.
The qualitative analysis introduced essential themes that are not identifiable using quantitative data. Of note, patients had limited or no discussions about sexual function with their healthcare providers, despite wanting such discussions. They were interested in obtaining further information about sexual function and PF online or through programmes. Despite various challenges associated with PF, all patients wanted to have an active sex life. One patient mentioned a pulmonary rehabilitation programme that included a dedicated sexual function and intimacy session in the context of advanced lung disease. However, this is not a mandatory component of pulmonary rehabilitation, and it is unknown how many programmes specifically address this. Overall, sexual function was described as an important component of quality of life.
Similar to other studies we found high rates of erectile dysfunction [7, 10]. Rates of erectile dysfunction are estimated at 40% in the general population [4], while our survey demonstrated close to 80%, and all male interviewees endorsed erectile dysfunction. Males were also more likely than females to report dyspnoea and distress. Recent data suggest that fibrotic diseases may be shared across multiple organs, including the reproductive organs and genitalia [31]. Whether multimorbid and cross-organ fibrosis can account for these relationships between PF and sexual dysfunction warrants further investigation.
Our data suggest PF impacts sexual function through the multifaceted patient disease journey, including physical symptoms, romantic relationship changes, psychological impacts and consequences of PF therapies. We propose a framework (figure 5) that can provide a structure to build opportunities for targeted interventions to optimise sexual wellbeing and promote research that improves patients’ quality of life. Potential interventions include psychological support, social support or sexual health education sessions as part of structured pulmonary rehabilitation programmes. Sexual function and sex-related quality of life could be considered as meaningful outcomes to patients in trials of therapeutics, but further work is needed to define this.
This study has limitations. We did not have a control group of age- and sex-matched healthy adults or a comparative group with other forms of chronic respiratory disease. However, this was not required to meet our objectives of characterising the impact of PF on sex and sexual function. Further, our causal inference methodology informs associations between sexual dysfunction and multiple clinical aspects of PF. Future studies may wish to include a control group and more detailed patient history, including relevant gynaecological/urological conditions, cardiovascular history or medications known to reduce sexual function, which would provide detailed information on these complex relationships. The patient cohort studies are from Canada and the UK, and the qualitative measures were available in English alone with only seven participants; however, the survey was in multiple languages, mitigating missing representation of the general population. Survey and interview participants chose to participate, introducing selection bias, but other data were sourced from prospective observational studies. Sexuality is a complex individual and social construct that differs across regions of the world, and despite efforts to include diverse patients, not all experiences were studied. We could not control for underlying depression, anxiety, medication usage or other comorbidities which may impact sexual function. Not all forms of PF were represented; however, our data suggest consistency in dyspnoea and distress across the PF subtypes included. The broad range of questionnaire scores, oxygen usage rates, ages and disease severities support that sex is an important issue across the disease spectrum, and may change as a patient's disease progresses.
In summary, this is the largest and most comprehensive study of sexual activity and sexual function in patients with PF, including multiple subtypes, sexes, genders and sexual orientations. We have included multiple key voices and lived experiences to characterise this previously under-recognised issue. We show that sexual dysfunction is common in PF patients, driven by multiple domains of disease, and not exercise limitation alone. 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 standardised quality of life tools to measure sexual dysfunction in PF. A simple intervention to address this issue could include incorporation of sexual health in pulmonary rehabilitation programmes or having open conversations with patients about their overall quality of life. Sexual function is an important aspect of patients’ quality of life, and further research is warranted to identify mechanisms underlying sexual dysfunction and interventions that optimise patients’ sexual wellbeing.
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Acknowledgements
We would like to express our deep gratitude to all the patients who completed these surveys, questionnaires and interviews for sharing their experiences, and supporting this work. We hope we have represented your views holistically. We would also like to gratefully acknowledge Maria Molina (Hospital Universitario de Bellvitge, Barcelona, Spain), Marlies Wijsenbeek and Catherina Moor (Erasmus MC, Rotterdam, The Netherlands), Pilar Rivera-Ortega (Manchester University NHS Foundation Trust, Manchester, UK), and Sarah Hosseini (University of Calgary, Calgary, AB, Canada) for their invaluable assistance with translation of the surveys. We would like to acknowledge the British Association of Lung Research for their financial support of F. Thornton-Wood, and the NIHR Nottingham Biomedical Research Centre. Thank you to our national and international colleagues, the Canadian Pulmonary Fibrosis Foundation, and Action for Pulmonary Fibrosis for distributing the survey to patient groups. CARE-PF collaborators: Jolene Fisher (University of Toronto, Toronto, ON, Canada), Martin Kolb (McMaster University, Hamilton, ON, Canada), Veronica Marcoux (University ofSaskatchewan, Saskatoon, SK, Canada), Hélène Manganas (Centre Hospitalier de l’Université de Montréal, Montréal, QC, Canada), Nasreen Khalil (University of British Columbia, Vancouver, BC, Canada) and Deborah Assayag (McGill University, Montreal, QC, Canada).
Footnotes
Ethics statement: Ethics approval was required for the international survey and individual patient interviews (REB22-1570 approved through the University of Calgary).
Author contributions: N. Avitzur and K.A. Johannson participated in the design and planning of the study. All authors provided critical input on study design, data analysis and interpretation, and manuscript preparation.
This article has an editorial commentary: https://doi.org/10.1183/13993003.02099-2025
Conflicts of interest: S.R. Johnson reports support for the present study from Nottingham NIHR BRC, grants from the Medical Research Council, LifeArc, LAM Action and La Morato de TV3, support for attending meetings from Ferrer, and is a trustee of LAM Action. C.J. Ryerson reports support for the present study from Boehringer Ingelheim, grants from Boehringer Ingelheim, consultancy fees from Boehringer Ingelheim, Pliant Therapeutics, AstraZeneca, Avalyn Pharmaceuticals, Trevi Therapeutics and Veracyte, payment or honoraria for lectures, presentations, manuscript writing or educational events from Hoffmann-La Roche and Boehringer Ingelheim, payment for expert testimony from Boehringer Ingelheim, and support for attending meetings from Boehringer Ingelheim. R.G. Jenkins reports grants from AstraZeneca, Galecto, GlaxoSmithKline, Nordic Biosciences, RedX and Pliant, consultancy fees from AbbVie, AdAlta, Apollo Therapeutics, Arda Therapeutics, AstraZeneca, Brainomix, Bristol Myers Squibb, Chiesi, Cohbar, Galecto, GlaxoSmithKline, Mediar Therapeutics, RedX, Syndax and Pliant, payment or honoraria for lectures, presentations, manuscript writing or educational events from Boehringer Ingelheim, Chiesi, Roche, PatientMPower and AstraZeneca, payment for expert testimony from Pinsent Masons LLP, participation on a data safety monitoring board or advisory board with Boehringer Ingelheim, Galapagos and Vicore, has an unpaid role in an advisory board at NuMedii, is a trustee of Action for Pulmonary Fibrosis, and is the chair of the editorial board for BMJ Open Respiratory Research. I. Stewart reports support for attending meetings from the European Respiratory Society and European Lung Foundation, and participation on a data safety monitoring board or advisory board with PatientMPower. K. Johannson reports grants from the University Hospital Foundation and Three Lakes Foundation, consultancy fees from Boehringer Ingelheim, Pliant Therapeutics, Hoffman-La Roche and Brainomix, payment or honoraria for lectures, presentations, manuscript writing or educational events from Boehringer Ingelheim and AbbVie, support for attending meetings from Boehringer Ingelheim, participation on a data safety monitoring board or advisory board with PFOX trial, and stock (or stock options) with Thyron SAB. The remaining authors have no potential conflicts of interest to disclose.
Support statement: The Canadian Registry for Pulmonary Fibrosis is sponsored by Boehringer Ingelheim, but the sponsors had no input on any aspect of this study. Funding information for this article has been deposited with the Open Funder Registry.
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