Studies suggest that people with cystic fibrosis (CF) experience urinary incontinence (UI) at higher rates than the general population. Although the cause is not entirely understood, “coughing causes repeated high pressure on the pelvic floor…[and] altered respiratory mechanisms and abnormal posture may also cause imbalance within the muscle of the pelvic floor and thereby compromising continence.”¹ Despite the higher risk for UI among people with CF, there remains a deficiency in screening, reporting, and treatment.

My encounter with UI began in my twenties, a period marked by silent suffering and misconstrued symptoms. During my routine obstetrics-gynecology visit, I mentioned my symptoms, only to have them dismissed because I had not given birth. The leakage during coughing, laughing, and sexual intimacy negatively impacted my quality of life. It never occurred to me that my CF could be the reason. I did my best to self-manage by using bulky pads and reducing triggers. But by my forties, the toll of UI had become too conspicuous to disregard.

During a medical appointment, the stress during pulmonary function testing (PFT) caused leakage, and my embarrassment led to my failure to report that I leaked urine with exertion. The stigma surrounding UI compounded my sense of isolation; however, a pivotal virtual meeting on incontinence in 2020 introduced me to a community of women sharing similar struggles. During the meeting, 22 out of 24 women with CF reported experiencing urine leakage.² Seeking assistance from a urogynecologist helped me understand that treatments are available. Afterward, I shared the information I gathered at the meeting and my diagnosis with my CF provider. His shock highlighted this knowledge gap of UI in CF care.

Figure. Cystic fibrosis patient proposed a quality improvement project to help others who experience urinary incontinence.

To raise awareness and prevent others from suffering silently, I proposed a Quality Improvement (QI) initiative addressing UI at my Adult CF Clinic in Dayton, Ohio (Figure). Drawing from my personal experiences, I highlighted the prevalence of UI within the CF community and the need for robust data. Often described as stress urinary incontinence, researchers estimate that up to 76% of women and 15% of men with CF experience UI.³ The problem becomes more common with age, and the CF population is aging, with 59% over 18.⁴ Of those, 4586 were 40 and older in 2021.⁵ Still, studies indicate UI can start in childhood, with rates in adults and children with CF higher than the general population. Interestingly, researchers find no direct correlation between lung function, body mass index, and UI incidence in this population.⁶ Underreporting may be quite common, with 44% of the children in one study having told neither their parents nor their doctor about the problem.⁷ In another study, only 49% of respondents thought UI was an important topic, and only 37% had discussed it with their doctor annually.⁸ Embarrassment and a lack of knowledge regarding treatment options may partially explain this lack of reporting. Coughing, laughing, recurring exacerbations, and physical activity can trigger incontinence, as can PFT and airway clearance therapy (ACT).⁶ In fact, between 16% and 42% of patients reported incontinence-related limitations on ACT.³ UI encountered during PFT and ACT may alter patient effort and adherence, negatively impacting pulmonary health.

This QI initiative aimed to improve the detection and management of UI in patients by implementing a UI questionnaire, offering a urology referral, and providing education. Screening occurred during intake at every in-person visit, enhancing the normalcy of this topic. In lay terminology, the screening question, added to our electronic medical record, asks, “Are you experiencing changes in your urinary and bowel habits, such as leaking when you cough, laugh, or perform your PFTs? (YES or NO).” Prioritizing symptom recognition over technical terminology aimed to enhance comprehension. Respiratory therapists were instructed to offer patients the opportunity to use the restroom before PFT. Voiding before PFT encouraged patients to expend their maximum effort in testing without worrying about bladder leakage. Providers acknowledged that the topic was outside their specialty, that discussions might be uncomfortable, and that patients may not want to discuss it. Still they felt that providing statistics and resources was valuable. The QI team easily implemented the tool, which caused little disruption to the clinic flow.

Out of 86 CF patients, our QI initiative screened 73 individuals, achieving an 85% participation rate. Seven patients (10%) in this group screened positive for UI. Following this screening, 4 patients were referred to urology for further evaluation and management, and 1 patient declined referral. Two were undecided about pursuing treatment. Positive patient feedback highlighted the initiative’s impact: “I just thought this was a normal part of aging or from having kids—I didn’t think that it could be CF-related.” Another person shared, “It is great to know I can get help if needed.” The favorable response from patients and health care providers, coupled with the results of this QI initiative, demonstrate a need to export this screening tool to other specialty practices and CF centers.

My primary objective was to enhance awareness of urinary incontinence in cystic fibrosis and advocate for routine screening, even if only one additional patient screened positive. I believe my initiative has effectively elevated awareness of UI among CF patients and fostered routine screening practices within clinical settings. Addressing UI as a preventative or maintenance measure enables patients to receive timely interventions, enhancing their quality of life and optimizing respiratory therapy outcomes.