A European Respiratory Journal study shows pulmonary fibrosis affects sexual function and quality of life, calling for open clinician-patient conversations.
Patients with pulmonary fibrosis (PF) have reported their diagnosis interfering with their sex life and sexual function, both physically and psychologically, according to a recent study published in the European Respiratory Journal.1
Sex and sexual function may seem taboo, especially when discussing health factors such as PF, but the lead investigator of the study said she encourages patients to talk to their health care provider in an interview with The American Journal of Managed Care® (AJMC®). The study, led by Na’am Avitzur, MD, an internal medicine physician and a fellow at the University of British Columbia researching interstitial lung disease, aimed to address an underreported challenge patients with PF face and to destigmatize the perspective and conversation around sex in therapeutic areas.
In this Q&A, Avitzur breaks down the study’s findings and suggests how the information can be used to advance PF research and treatments.
This transcript has been lightly edited for clarity.
AJMC: What inspired you and your colleagues to pursue this study?
Avitzur: The goal of our study was to see if sexual function is even affected in patients with pulmonary fibrosis and to do a large, multicenter study that was international to gauge how much of a problem it is. The goal going forward is that this is a jumping-off point or the first step in realizing this is something that's affecting our patient's quality-of-life and that they care about it.
While we may think that they're 100% focused on their disease, there are many other things in their life that are important to them, even when they're very functionally limited in their exertion. I'm hopeful that there will be more future studies analyzing different parts of patient sexual health and pulmonary fibrosis, or looking for different interventions or multidisciplinary ways to improve our patients’ quality-of-life. And I think it is an additional little piece that can be added to that picture of pulmonary fibrosis and quality-of-life improvements.
AJMC: Given the high prevalence of dyspnea affecting sexual activity in patients with PF, what clinical tools or interventions could help clinicians assess and address sexual function more routinely in idiopathic pulmonary fibrosis (IPF) care?
Avitzur: Part of what we used in our study was that one specific question, which was number 21 from the University of California, San Diego Shortness of Breath Questionnaire (UCSD-SOBQ). That question is limited in the sense that it really just assesses dyspnea during sex, and sexual function is really multifactorial, so it doesn't give us the full picture.
In our study, patients reported that they were interested in having conversations with trusted health care providers, whether that's their physicians, nurses, or other allied health care professionals. I think building a relationship with our patients is essential.
The other thing is that pulmonary rehab could be helpful. Some of our patients, or one of the patients we talked to, mentioned that in their local pulmonary rehab, there was a session on sexual health, so adding a session like that could be beneficial. I did want to mention that we're not necessarily suggesting that people give out long sexual function surveys or questionnaires, because that can be pretty onerous to patients who already perform a lot of surveys, as it is, but perhaps more research could help find other ways of assessing and addressing sexual function and pulmonary fibrosis.
AJMC: How might future clinical trials incorporate quality-of-life measures such as sexual health or mental health into IPF therapeutic end points, and what validated instruments would you suggest?
Avitzur: I think this is a good question that brings up the idea of generally using health-related quality-of-life patient-reported outcomes in trials, and these aren't typically used because we like having hard end points in studies, such as lung function and things that are very objective. But even if we're looking at, let's say, a trial where patients are followed over time, some of these patient-reported-outcome questionnaires, which are health-related in quality-of-life, some of them have been validated in interstitial lung disease (ILD), or at least modified to use an ILD, the UCSD being one of them.
Although [question 21 in the USCD-SOBQ] just assesses dyspnea. There are more extensive [questionnaires], but these could be considered as therapeutic end points and trials. The other thing is perhaps we want to also consider using qualitative methods or mixed methods in trials as well to really get the patient voice.
AJMC: Are there emerging pharmacologic or non-drug-management strategies (eg, pulmonary rehab, psychosocial support) that you believe could mitigate the physical and psychological impacts of PF documented in your study?
Avitzur: I think the main point, and part of what drove us to do the study, or what we were hoping [to do], was reduce stigma, right? Sex is a very taboo topic, but what we discovered was that patients not only have sexual dysfunction, but they also want to talk about it, and they want to talk about it with people they trust and have a good relationship with. I think that was really insightful for us to learn from a nonpharmacological standpoint.
Things like having a more passive role during sex, or if patients are using oxygen, to make sure to increase their oxygen before they're having sex; obviously, there are limitations involved with that, as we noted in our study. I think this could be something that is added to pulmonary rehab in programs: to add a sexual health session and then psychosocial support, for sure, either with professionals or therapists that the patients see.
I also think there's a lot of importance to patient support groups where they can discuss with other people who have the same disease that they do, to see that they're not the only ones with these symptoms or having issues with their sex life, and that this is a common problem. There are trials that look at things like cough, or pulmonary rehab, or oxygen use, or mental health, and patients continuing to do all those trials are all steps forward in looking at the whole patient when we're assessing them.
AJMC: Your study highlights multiple domains affecting patients’ sexual function; how should multidisciplinary care teams (including pulmonologists, physical therapists, and mental health providers) collaborate to address these complex needs?
Avitzur: I think your question and these results are just a reminder that patients are complex, and there's not one single intervention that we can do to magically improve their sexual function or other symptoms that these patients experience. Coming together with these teams in a multidisciplinary way is exactly what we should be aiming for, and perhaps even more studies on how we can develop these multidisciplinary teams and what will be helpful for patients in these groups.
AJMC: Considering the gap in effective therapies for IPF, what novel therapeutic targets or clinical trials (eg, immune modulation, precision medicine approaches) do you find most promising for future research?
Avitzur: You know, this is an exciting time in the world of interstitial lung disease. There are lots of different therapies coming down the pipeline, whether that's for IPF or non-IPF, or even for certain comorbidities like vascular disease or pulmonary hypertension. There are a lot of things, hopefully, coming that will help our patients and improve their quality-of-life.
The goal of our study was just to introduce this topic and look to see if sexual function is a problem for patients with pulmonary fibrosis, and it's really just the tip of the iceberg. Just to inform you that this is a problem, it's a priority for patients, and more research can look at future treatment targets in this area.
AJMC: What patient education resources or support networks do you recommend for patients with IPF to help them navigate both disease management and quality-of-life challenges identified in your work?
Avitzur: I really think that patient support groups are important, and from my experience working with these patients, I know that they can add a lot of benefit to people who are ready for it. Not all patients are ready to join a support group, but there are many local support groups, as well as other support in online forums on social media for patients with interstitial lung disease, not just IPF, but all forms of pulmonary fibrosis.
I'm from Canada, so the Canadian Pulmonary Fibrosis Foundation is a good website that has a lot of good resources for patients, including different videos and sessions that they've run in the past that they have on their website for various issues that patients with pulmonary fibrosis may face throughout their whole kind of disease course.
This study, to me, illustrated the fact that patients care about this topic, about sexual function, and they want to talk to their physicians about it, and I would encourage them to do that. Physicians—this is again a topic that might be awkward to some people, but physicians and health care providers are professionals, and they should be ready to have these conversations.
If patients have a trusted and good relationship with that health care provider, then I encourage them to bring it up, because, again, it might help improve their quality-of-life and their sex life, and they don't have to kind of suffer in silence. [Patients] should know that the door is open if they want to open it, and they're not the only ones experiencing this.
Reference:
1. McCrear S. Navigating sexual dysfunction in patients with pulmonary fibrosis. AJMC. January 22, 2026. Accessed January 28, 2026. https://www.ajmc.com/view/sexual-dysfunction-in-patients-with-pulmonary-fibrosis