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. Author manuscript; available in PMC: 2022 Apr 1.
Published in final edited form as: Urology. 2020 Mar 18;150:227–233. doi: 10.1016/j.urology.2020.03.011

Laying the Foundation for Bladder Health Promotion in Women and Girls

Ariana L Smith 1, Leslie M Rickey 2, Sonya S Brady 3, Cynthia S Fok 4, Jerry L Lowder 5, Alayne D Markland 6, Elizabeth R Mueller 7, Siobhan Sutcliffe 8, Tamara G Bavendam 9, Linda Brubaker 10
PMCID: PMC7501176  NIHMSID: NIHMS1584127  PMID: 32197984

Executive Summary

Prevention strategies have been effective in many areas of human health, yet have not been utilized for lower urinary tract symptoms (LUTS) or bladder health (BH). This commentary outlines LUTS prevention research initiatives underway within the NIH-sponsored Prevention of Lower Urinary Tract Symptoms Research Consortium (PLUS). Prevention science involves the systematic study of factors associated with health and health problems, termed protective and risk factors, respectively. PLUS is enhancing traditional prevention science approaches through use of: 1) a transdisciplinary team science approach, 2) both qualitative and quantitative research methodology (mixed methodology), and 3) community engagement. Important foundational work of PLUS includes development of clear definitions of both BH and disease, as well as a BH measurement instrument that will be validated for use in the general population, adolescents, and Latinx and Spanish-speaking women. The BH measurement instrument will be used in an upcoming nationally-representative cohort study that will measure BH and investigate risk and protective factors. PLUS investigators also developed a conceptual framework to guide their research agenda; this framework organizes a broad array of candidate risk and protective factors that can be studied across the life course of girls and women.1 As PLUS begins to fill existing knowledge gaps with new information, its efforts will undoubtedly be complemented by outside investigators to further advance the science of LUTS prevention and BH across additional populations. Once the BH community has broadened its understanding of modifiable risk and protective factors, intervention studies will be necessary to test LUTS prevention strategies and support public health efforts. LUTS providers may be able to translate this evolving evidence for individual patients under their care and act as BH advocates in their local communities.

INTRODUCTION

As clinicians, we know that patients with mild symptoms have a better chance of improvement compared to those with severe longstanding symptoms. This is true in virtually every area of health care, including treatment of lower urinary tract symptoms (LUTS) in women and girls – think about the woman with urgency who is just starting to experience leakage a few times per month, compared to the woman presenting for the first time wearing absorbent products for leakage day and night. LUTS are increasingly recognized as a public health issue due to their high prevalence, significant individual burden, and substantial societal impact. The majority of LUTS research and clinical practice has focused on treatment options for the most severely affected segment of the population. This is in fact just the tip of the iceberg, as there are millions of women living with LUTS who do not seek advice or treatment.2,3 Clinical management has focused almost exclusively on detection, diagnosis, and treatment of LUTS without attention to the potential for improving health through LUTS prevention and promotion of bladder health (BH). Therefore, the evidence base for prevention or detection of early symptoms is lacking. This commentary describes the anticipated benefits of LUTS prevention and BH promotion, the clinician’s role in these two efforts, and ongoing transdisciplinary, scientific activities within the NIH-sponsored Prevention of Lower Urinary Tract Symptoms Research Consortium (PLUS).

Prevention strategies have been effective in many areas of health, notably cardiovascular health (“heart healthy” campaigns), oral health (use of fluoride to reduce dental disease), lung cancer incidence (smoking prevention and cessation campaigns), and overall healthy living habits (community interventions).4 BH is a nascent area of scientific investigation. Although clinicians who diagnose and treat LUTS are not expected to be front-line prevention providers, they should have knowledge of this work, as well as provide support and advocacy for LUTS prevention research and implementation initiatives.

THE CLINICIAN ROLE

LUTS clinicians are often tasked with treating patients with complex or refractory LUTS. How many of those women could have had a different BH trajectory with earlier identification of risk factors or symptoms? Or reduced their risk through improved education about healthy behaviors? Figure 1 illustrates the intended impact of a LUTS prevention strategy, in contrast to the current clinical strategy, with a resultant shift in the population toward increased BH over time.

Figure 1.

Figure 1.

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Intended impact of a prevention strategy: Prevention efforts will shift the population toward increased bladder health and reduced lower urinary tract symptoms.

In addition to an appreciation for the importance and need for LUTS prevention research, clinicians have the opportunity to promote both primary prevention (prior to the onset of symptoms) and secondary prevention (in the early stages of symptom onset) in their clinical practice. Prevention could have an important impact given that 14% of continent women will develop at least monthly leakage over two years5 and 30% with monthly leakage will progress to weekly leakage over a similar time period.6 Although our current knowledge of prevention strategies is limited, clinicians can reinforce the role of fluid intake, pelvic floor and general musculoskeletal health, avoidance of prolonged urine holding, and obesity on LUTS, and expand these messages when new risk and protective factors are identified. As clinicians who treat not only LUTS, but also a variety of conditions involving the urinary tract (e.g. hematuria, stones, urinary tract infections, urinary tract malignancy), LUTS experts have the opportunity to disseminate prevention information to a wide range of women with no or mild LUTS. Furthermore, by taking the time to understand patients’ environment (e.g., work-related constraints on fluid intake and voiding) and how it affects their behaviors, risk of LUTS, symptoms, and treatment response, LUTS experts may be able to provide more effective patient-centered education and care.

THE SCIENTIFIC RIGOR NEEDED FOR PREVENTION RESEARCH

PLUS is applying principles of prevention science to better understand risk and protective factors for LUTS and BH. An underlying premise of prevention science is the need to understand what leads to poor health in order to develop strategies to preserve health and prevent health problems.7,8 Prevention science involves the systematic study of factors associated with health and health problems, termed protective and risk factors, respectively.7,8 Risk factors are attributes, characteristics, or exposures that increase the likelihood that an individual will develop a health condition. In contrast, protective factors enhance health and lessen the likelihood that a health condition will occur in response to risk factors.

When undertaking a comprehensive research approach, prevention scientists conduct etiologic studies to identify not only risk and protective factors at the individual level (e.g., knowledge, attitudes, behaviors), but also determinants of these factors at different levels of the social context (ecology) that surrounds individuals (e.g., close interpersonal groups such as family and peers; institutions such as schools, workplaces, and health care systems; and broader influences such as one’s neighborhood, community, and society; see Figure 2 for an example).7–9 Prevention scientists also conduct etiologic studies to identify risk and protective factors that represent different facets of biology (e.g., multi-organ systems, cellular function, molecular function, genomic substrate).9 Health status is determined, in part, by the interaction of biologic factors with one’s social context (ecology) and behaviors.9 In the clinical setting, a lack of response to treatment may not be because the treatment did not work, but rather because it did not work well enough to overcome other contributing factors to the health problem. In addition to considering a broad array of risk and protective factors, etiologic research is greatly enhanced by a life course developmental approach that considers the timing of exposure to risk and protective factors throughout the life course10.

Figure 2:

Figure 2:

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Recurrent urinary tract infections as an example of social ecological influences on bladder health. Selected candidate risk and protective factors.

To build the body of evidence for potential risk and protective factors, multiple studies of increasing methodologic rigor (e.g., retrospective case-control studies, cohort studies) are needed.11 As the evidence base grows, prevention scientists conduct systematic literature reviews to determine whether candidate risk and protective factors are strongly, consistently, and plausibly linked to LUTS and BH;12 whether previous prevention or intervention efforts have demonstrated the feasibility of modifying these factors; and whether modifying these factors resulted in improved health. These considerations are important before investing time and resources into developing and testing methodologically rigorous health promotion or prevention interventions. Dissemination of resulting findings is intended to impact health promotion programs, practices, and policies, in turn benefiting the health of populations across the life course.

PLUS is enhancing traditional prevention science approaches in several ways to broaden the impact of its work (Figure 3). First, the consortium is transdisciplinary. While clinicians who treat LUTS are essential partners, PLUS includes broad expertise ranging from community stakeholders to scientists specializing in urology, female pelvic medicine and reconstructive surgery, pediatric/adolescent medicine, reproductive medicine, midwifery, women’s studies, sexual and gender minority health, gerontology/geriatrics, infectious diseases, behavioral medicine, psychology, psychiatry, preventive medicine, neuroendocrinology, clinical and social epidemiology, prevention science, medical sociology, community-engaged research, community health promotion, measure development, and biostatistics. Second, consortium members are committed to using mixed methods, including qualitative methodology. By capturing the lived experience of girls and women through focus groups, PLUS has enhanced our understanding of BH/LUTS beyond the evidence derived from traditional means, such as theory, literature reviews, and clinical and epidemiologic observations.13 Third, consortium members are committed to a community-engaged approach to research. In addition to community stakeholder members within the PLUS Consortium, community partners recruited through PLUS research centers are assisting in pragmatic, yet vital, aspects of measure development (e.g., clarity of items), study design (e.g., optimal recruitment and retention strategies), and dissemination (e.g. public messaging). The continual engagement of PLUS with community stakeholders will also allow us to more easily implement and disseminate our findings to girls and women in the community as the evidence base matures. Ultimately, our scientific contributions may also influence the advocacy efforts of others, including readers of this commentary, to more easily mobilize resources, influence systems, and serve as catalysts for changing programs, practices, and policies.14–16

Figure 3.

Figure 3.

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Enhanced methodological approach and key activities employed by PLUS in the development of foundational work and preparation for a population based cohort study on bladder health.

PLUS PROGRESS

Figure 3 depicts key activities employed by PLUS in the development of foundational work and preparation for a population based cohort study on bladder health. These activities are further described below.

Understanding Bladder Health

An initial key PLUS effort was to develop a BH definition for research purposes: “A complete state of physical, mental, and social well-being related to bladder function and not merely the absence of LUTS. Healthy bladder function permits daily activities, adapts to short-term physical or environmental stressors, and allows optimal well-being (e.g., travel, exercise, social, occupational, or other activities).” This definition is consistent with the World Health Organization’s definition of health, in that it acknowledges that health is not merely the absence of disease (i.e., BH is not solely the absence of LUTS) and emphasizes the healthy bladder’s ability to adapt to short-term physical, psychosocial, and environmental challenges.17 It also served as the foundation for developing definitions of healthy bladder function (storage, emptying, and a novel bioregulatory function)18 to complement existing LUTS definitions.19 PLUS developed the concept of a ‘bioregulatory’ function to recognize the role that the bladder plays in protection from pathogens, chemicals, and malignancy.17,18 Developing comprehensive definitions of healthy bladder function was critical to inform the development of a BH instrument for future BH promotion and LUTS prevention research initiatives.

To complement our definitions of healthy bladder function, PLUS investigators completed a systematic review and meta analysis of noninvasive measurements of healthy bladder function (e.g., day/nighttime frequency, uroflowmetry parameters, postvoid residual) in healthy women. Overall, this review was limited in its ability to generate precise normative reference estimates, particularly in sub-groups defined by age, due to the low number of studies identified, poor/unclear definitions of “healthy,” and inconsistent reporting of parameters, leading to estimates with wide confidence intervals and high heterogeneity.20 Thus, the important metrics that LUTS clinicians use to evaluate LUTS are not well described in healthy populations across the lifecourse. Our ongoing analyses using existing studies will be used to further refine these values.

PLUS investigators have also used data from the Boston Area Community Health (BACH) Survey, a population-based, longitudinal study of community-dwelling residents, to begin to quantify the spectrum of BH in the general female population. Using information on LUTS and bladder-specific well-being (e.g., interference in daily activities), PLUS investigators found a wide distribution of BH and that only 1 in 5 women might be considered to have “optimal” BH based on the absence of LUTS and diminished well-being.21

In addition to systematic reviews and secondary data analyses, PLUS conducted focus groups across 7 diverse U.S. geographic regions to better understand women’s and girls’ perspectives of BH. PLUS investigators found a wide range of terms and significant discordance between medical and lay terminology to describe bladder function, as well as differing views of bladder problems and health across a diverse, community-based sample of adolescent and adult women.22 These findings have important clinical implications, as discordance likely limits clear understanding and successful communication between women, healthcare providers, and researchers.

Identifying a broad array of risk and protective factors

PLUS developed a conceptual framework to guide its research agenda by encouraging the study of factors across all levels of biology and social context. This multi-level determinant approach will expand our targets for intervention beyond individual biology and in turn provide the foundation to optimally impact BH promotion among diverse populations. Another key component of PLUS work includes the application of a life-course approach23 and the inclusion of women across the age spectrum in order to consider the changing behavioral, biologic, and environmental factors that may impact BH over their lifespan. As an example, PLUS investigators used qualitative research methodology to better understand US adolescent and adult cisgender women’s lived experiences accessing toilets in schools, workplaces, and public spaces. This work identified that women’s public toilet access was restricted by “gatekeepers” (e.g., teachers, bosses, workplace policies) and that self-restricting toilet use was based on internalized norms to prioritize school/work responsibilities over a biologic need to urinate, as well as the lack of cleanliness of public toilets.24 Relatedly, clinicians often hear work-related concerns from patients with LUTS, particularly their lack of freedom to void when needed; however, little is known about BH and occupation type. A recent PLUS rapid review and meta-analysis found that LUTS prevalence varied across broad occupational groups; however given the paucity of work in this area, additional studies with more detailed occupation information are needed.25

Measuring BH and candidate risk and protective factors (current and future work)

To further describe the distribution of BH from a population-based perspective, PLUS developed a BH measurement instrument that was refined using cognitive interviewing techniques. This novel tool is currently being validated in the general population with plans for validation in adolescents as well as Latinx and Spanish-speaking women.

Once the BH instrument is finalized as the Bladder Health Scale, it will be used in a prospective observational study of adolescent girls and women across various ages and geographical regions. This nationally-representative cohort study will focus on identifying a broad array of risk and protective factors for LUTS and BH using new measurement tools developed by PLUS. Biospecimens will be collected to provide further insight into BH and risk and protective factors (e.g., the urinary microbiome).

The planned population-based study will also provide the foundation to further our knowledge of girls’ and women’s BH beliefs and the context around toileting and toileting behaviors in various physical environments. The PLUS Consortium is developing quantitative items to assess girls’ and women’s knowledge, attitudes, and beliefs about BH; how bowel function may impact BH; and how the toileting environment may impact BH behaviors. PLUS also plans to measure individual toileting behaviors, bladder symptoms, and voiding patterns in “real” time with a novel mobile health application called “Where I Go.” Information from this user-friendly app will fill an important BH knowledge gap by enabling researchers to better measure an individual woman’s access to and autonomy to use a toilet and the compensatory behaviors she may use based on her environment. This information can be used to identify appropriate targets for future prevention interventions on a population level.

THE FUTURE OF BLADDER HEALTH AND LUTS PREVENTION RESEARCH

As studies of BH and LUTS prevention progress, we anticipate insights into degrees of health, not unlike degrees of symptoms or disease. This will offer clinicians the opportunity to more accurately measure patient outcomes and frame their interventions in terms of “return to health,” including appropriate assessments across the life course. In addition, clinicians can anticipate the discovery of new risk and protective factors for LUTS and BH that are modifiable and amenable to intervention. As this work progresses, we envision that intervention studies will generate evidence that has the potential to inform programs and policies, including the approach to BH education and pragmatic matters such as toilet design and bathroom access in public places, workplaces, and schools. Equally important, PLUS research will identify the best ways to disseminate PLUS findings to the principal beneficiaries – girls and women – and implement strategies. Finally, researchers studying benign urinary tract conditions may find the PLUS conceptual framework beneficial when framing research questions by considering the multi-level determinants that expand targets for intervention beyond individual biology. PLUS efforts will undoubtedly be complemented by those from the broader research community to further advance the science of LUTS prevention and BH across a wide array of populations.

CONCLUSION AND TAKE HOME MESSAGES

BH research can benefit from transdisciplinary collaboration to advance the science and ultimately the well-being and quality of life of girls and women. PLUS is unique in its focus on prevention science and guidance by a broad conceptual framework to optimize risk and protective factor identification for women across the lifespan from childhood to older age. Prevention science recognizes that an individual’s environment impacts her/his behaviors, emergence or progression of disease, and effectiveness of recommended prevention strategies and therapies. Successful prevention and treatment strategies must consider individual behaviors as well as social, community, and broader societal factors that may modify an individual’s risk of LUTS.

Readily available literature on the potential for LUTS progression and eventual health impact may start to change the perception that LUTS are merely an annoyance. Strategic opportunities to screen for LUTS and modifiable risk factors (e.g., diabetes, obesity, smoking) among girls and women in the community and primary care clinics may also enhance LUTS prevention efforts. Finally, LUTS clinicians can be advocates for BH, whether we work to ensure that children and adults have access to safe, clean bathrooms in their schools, workplaces, and public spaces, or educate community members about prevention and early intervention for LUTS. Given the aging population and the increased prevalence and severity of LUTS with age, LUTS clinicians can make important contributions to community health though education and advocacy efforts. Ultimately, clinicians have the unique ability to integrate science and humanity to craft personalized patient-centered plans that include consideration of their patients’ distinct beliefs, behaviors, and environments when implementing LUTS prevention and BH promotion strategies.

Acknowledgements

The Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium is supported by the National Institutes of Health (NIH) through cooperative agreements (grants U01DK106786, U01DK106853, U01DK106858, U01DK106898, U01DK106893, U01DK106827, U01DK106908, U01DK106892). Additional support is provided by the National Institute on Aging, NIH Office of Research on Women’s Health, and NIH Office of Behavioral and Social Sciences Research. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of NIH.

Participating research centers at the time of this writing are as follows:

Loyola University Chicago – 2160 S. 1st Avenue, Maywood, Il 60153–3328

Linda Brubaker, MD, MS, Multi-PI; Elizabeth R. Mueller, MD, MSME, Multi-PI; Colleen M. Fitzgerald, MD, MS, Investigator; Cecilia T. Hardacker, RN, MSN, Investigator; Jeni Hebert-Beirne, PhD, MPH, Investigator; Missy Lavender, MBA, Investigator; David A. Shoham, PhD, Investigator

University of Alabama at Birmingham – 1720 2nd Ave South, Birmingham, AL 35294

Kathryn L. Burgio, PhD, PI; Cora E. Lewis, MD, MSPH, Investigator; Alayne D. Markland, DO, MSc, Investigator; Gerald McGwin, PhD, Investigator; Camille P. Vaughan, MD, MS, Investigator; Beverly Williams, PhD, Investigator

University of California San Diego – 9500 Gilman Drive, La Jolla, CA 92093–0021

Emily S. Lukacz, MD, PI; Sheila Gahagan, MD, MPH, Investigator; D. Yvette LaCoursiere, MD, MPH, Investigator; Jesse N. Nodora, DrPH, Investigator

University of Michigan – 500 S. State Street, Ann Arbor, MI 48109

Janis M. Miller, PhD, MSN, PI; Lawrence Chin-I An, MD, Investigator; Lisa Kane Low, PhD, CNM, Investigator

University of Minnesota, Scientific and Data Coordinating Center (SDCC) – 3 Morrill Hall, 100 Church St. S.E., Minneapolis MN 55455

Bernard L. Harlow, PhD, Multi-PI; Kyle Rudser, PhD, Multi-PI; Sonya S. Brady, PhD, Investigator; John Connett, PhD, Investigator; Haitao Chu, MD, PhD, Investigator; Cynthia S. Fok, MD, MPH, Investigator; Todd Rockwood, PhD, Investigator; Melissa Constantine, PhD, MPAff, Investigator

University of Pennsylvania – Urology, 3rd FL West, Perelman Bldg, 34th & Spruce St, Philadelphia, PA 19104

Diane K. Newman, DNP, ANP-BC, FAAN PI; Amanda Berry, PhD, CRNP, Investigator; C. Neill Epperson, MD, Investigator; Kathryn H. Schmitz, PhD, MPH, FACSM, FTOS, Investigator; Ariana L. Smith, MD, Investigator; Ann E. Stapleton, MD, FIDSA, FACP, Investigator; Jean F. Wyman, PhD, RN, FAAN, Investigator

Washington University in St. Louis - One Brookings Drive, St. Louis, MO 63130

Siobhan Sutcliffe, PhD, PI; Aimee James, PhD, MPH, Investigator; Jerry Lowder, MD, MSc, Investigator

Yale University - PO Box 208058 New Haven, CT 06520–8058

Leslie Rickey, MD, PI; Deepa Camenga, MD, MHS, Investigator; Shayna D. unningham, PhD, Investigator; Toby Chai, MD, Investigator; Jessica B. Lewis, PhD, MFT, Investigator

Steering Committee Chair: Mary H. Palmer, PhD

NIH Program Office: National Institute of Diabetes and Digestive and Kidney Diseases, Division of Kidney, Urologic, and Hematologic Diseases, Bethesda, MD

NIH Project Scientist: Tamara Bavendam MD, MS; Project Officer: Ziya Kirkali, MD; Scientific Advisors: Chris Mullins, PhD and Jenna Norton, MPH;

Footnotes

Financial Disclosures:

ALS: None

LMR: CAB for UroCure, LLC; Renovia Inc; ArmadaHealth

SSB: None

CSF: Author for UptoDate

JLL: None

ADM: None

ERM: Boston-Scientific Advisory Board, Ethicon/Butler-Snow Legal Expert, Up To Date

Royalties

SS: None

TGB: none

LB: Editorial stipends from JAMA, Female Pelvic Medicine and Reconstructive Surgery, and Up to Date

For the Prevention of Urinary Tract Symptoms (PLUS) Research Consortium

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Contributor Information

Ariana L. Smith, Department of Surgery, University of Pennsylvania’s Perelman School of Medicine, Philadelphia, PA.

Leslie M. Rickey, Department of Urology, Yale University School of Medicine, New Haven, CT.

Sonya S. Brady, Department of Epidemiology and Community Health, University of Minnesota School of Public Health, Minneapolis, MN.

Cynthia S. Fok, Department of Urology, University of Minnesota, Minneapolis MN.

Jerry L. Lowder, Department of Obstetrics and Gynecology, Washington University, St Louis, MO.

Alayne D. Markland, Department of Medicine, University of Alabama at Birmingham and the Birmingham/Atlanta Geriatric Research, Education, and Clinical Center, Birmingham, AL.

Elizabeth R. Mueller, Departments of Obstetrics and Gynecology & Urology, Stritch School of Medicine, Loyola University Chicago, Chicago IL.

Siobhan Sutcliffe, Department of Surgery, Washington University, St. Louis, MO.

Tamara G. Bavendam, National Institutes of Health, Bethesda, MD.

Linda Brubaker, Department of Obstetrics, Gynecology and Reproductive Sciences, UC San Diego, San Diego, CA.

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