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A Qualitative Exploration of Women With Cystic Fibrosis and Urinary Incontinence - Beyond the Abstract

Urinary incontinence (UI) is an often overlooked aspect of the lives of many, that disproportionately affects women, and is especially common in those with medical comorbidities including those with chronic cough. Cystic Fibrosis (CF) is one such condition that has seen significant medical advancements with increased life expectancy but continues to overlook aspects of care including sexual and reproductive health.

The prevalence of UI in people with CF ranges from 30-76%, but there is a lack of in-depth, qualitative data that explores the experiences of women with CF and UI. As we look to improve the care of not only those with CF, but also other chronic, childhood medical conditions, we interviewed women with CF and UI to understand their experiences, attitudes, and preferences toward UI symptoms and treatment.

Twenty-six women aged 18 years or older, from across the United States of America, were enrolled in our study if they had CF and reported UI (by answering affirmatively to the question “Have you experienced urinary incontinence?”). Participants completed semi-structured, individual telephone interviews investigating their experiences with UI and CF. We asked participants to reflect on their experiences with CF and UI care exploring UI symptoms, care-seeking, treatment history, potential treatment preferences, and the role of their CF provider in their UI care.

After analysis, key themes included the following:

  1. Most women with CF and UI report low bother from symptoms likely related to stress UI, and highly effective modulator therapy (HEMT) has greatly improved UI symptoms and decreased bother.
  2. Most women with CF and UI had previously discussed UI symptoms with family and/or peers but had not sought care due to stigma or low priority.
  3. Women with CF and UI had minimal knowledge about UI in general and how it relates to CF.
  4. Most desired broad screening for UI from their CF team and improved multidisciplinary care.
  5. Highly effective UI treatment options with low-time commitment and easily accessible resources are desired.
This information can now be used to improve screening for UI not only among CF care teams but also for those suffering from many chronic conditions that may start in childhood. Understanding an individual’s symptoms, bother, and goals of treatment will only lead to improved quality of life and trust in the healthcare team.

Written by:

  • Megan Bradley, MD, Department of Obstetrics, Gynecology and Reproductive Sciences, Division of Urogynecology, University of Pittsburgh School of Medicine, Pittsburgh, PA
  • Laura Vargas, University of Pittsburgh School of Medicine, Pittsburgh, PA
  • Traci Kazmerski, MD, MSc, Division of Adolescent and Young Adult Medicine, Department of Pediatrics, University of Pittsburgh Medical Center, Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA
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