The following is based on presentations made in a plenary session at the annual Society of Urodynamics, Female Pelvic Medicine & Urogenital Reconstruction meeting held this year in San Diego, California.

Why are so many of the conditions under the care of urologists considered quality of life conditions not prioritized by patients, clinicians, researchers, payers and society?

Stigmatized pelvic conditions related to bodily functions that are not be “talked about” are identified as personal failures, “facts of life” or even treated as not important by some medical care providers. These conditions are deprioritized by being labeled “benign” or “quality of life” conditions. These conditions are considered to be nuisances, caused by prioritized conditions such as diabetes, cardiovascular, neurological and mental health conditions, despite evidence that these pelvic conditions could cause or exacerbate these prioritized conditions. Our research reflects this more traditional way of thinking and stymies our ability for truly innovative discoveries that will improve the lives of individuals who suffer with these conditions.

Trying to change this thought process is an immense challenge that starts with having a broad framework to organize our thinking about the “downstream” impacts of these noncancerous pelvic conditions (NPCs).

Before describing the framework, it is helpful to first clarify the term noncancerous pelvic health. We know that urological conditions often coexist and in many cases are impacted by reproductive, sexual and rectal/colon conditions. Among pelvic conditions, not only does the pathophysiology often overlap, but so does the “sensitive” nature of these conditions and the perceived importance, or lack thereof, of these conditions. Terms we use—urology, urogynecology, genitourinary, urogenital—all miss out on important aspects of pelvic health (sexual/genital, rectal/colon, male/female). Thus below we refer to these conditions as NPCs, an imperfect acronym that is meant to be inclusive (covering all conditions related to urological, reproductive, sexual and colorectal health) while also focusing exclusively on noncancerous conditions.

Based on a National Institute of Diabetes and Digestive and Kidney Diseases-sponsored workshop held in October 2019, we constructed a conceptual framework for how to think about downstream burdens of NPCs, ie burdens that result from NPCs rather than the more typical approach of examining upstream factors that impact NPC severity and treatment (see Figure).¹ This work benefited from being a collaborative effort that involved nurses, primary care providers, urologists and many other disciplines.

Figure. Framework for the hidden burden of NPCs, referred to in the paper as noncancerous genitourinary (GU) conditions (NCGUCs). See Brady et al 2021 for more details.¹ QoL, quality of life. Reproduced with permission of Elsevier.

As researchers and scientists, many of us may be more accustomed to focusing on “upstream” causes of these conditions. With upstream research, we are interested in understanding how the world around us may cause or worsen these conditions. The hope is to identify risk factors that we can mitigate or factors predictive of health that we can encourage or support. With downstream burdens, however, the focus is not on what causes these conditions, but how these conditions impact (or burden) the self as well as society. For example, urinary incontinence can lead to social isolation, loneliness and depression. Focusing on the downstream burden demonstrates how NPCs represent a paradigm shift in conceptualizing the significance of NPCs, signaling that NPCs are more than just an annoyance, but instead are serious health conditions that deserve more attention as public health priorities.

The framework consists of 2 broad sections: one that focuses on the downstream impacts of NPCs on biology and the other that focuses on the downstream impacts of NPCs on social-ecology, starting with the mind/individual, through interpersonal relationships, organizations, the community, society and even the ecosystem (eg the negative impact of diaper use on the environment). This broader framework takes clinicians outside of their training and comfort zone and is inclusive of social determinants of health.

For clinicians with interests outside of the pelvis, not only can the pelvis cause/exacerbate issues elsewhere in the body (as alluded to above with mental health), but pelvic dysfunction can serve as an early warning sign for dysfunction elsewhere in the body. For example, it is relatively well known that erectile dysfunction can be an early warning sign of cardiovascular dysfunction. Thus in both cases, whether causal of dysfunction elsewhere or an early manifestation of dysfunction elsewhere, more attention and care to NPCs could lead to better health outcomes through the body.

The conceptual framework should be viewed as a starting point, not an end, in describing and organizing these downstream burdens. There is much still to understand about how NPCs impact the biology of an individual as well as the various levels of social ecology.

So, what can be done going forward? We recommend improving upon the “story” using the conceptual framework as an organizing tool. This will involve additional research to fully understand the burdens and the social determinants associated with NPCs. We need to train and engage interested parties in advocacy techniques. Additionally, we need to determine our goals: the “ask.” NPCs span a variety of professional societies (American Urological Association; American Urogynecologic Society; International Continence Society; International Urogynecological Association; International Society for the Study of Women’s Sexual Health; Society of Gynecologic Surgeons; Society of Urodynamics, Female Pelvic Medicine & Urogenital Reconstruction; Society of Women in Urology and many more!) and interest groups. Although scientifically these groups may be diverse and may not often work together, we all would benefit from a concerted effort in determining how best to improve funding support for NPCs. We should continue to extend scientific outreach to physicians outside of urology, including primary care and other nonsurgical specialties.

Expanding our understanding of social determinants of health and developing policies to effectively address these social needs remains an unmet need for NPCs. Recognizing that NPCs can and do have significant downstream burdens emphasizes that they should be viewed as serious public health priorities that require more attention. It is up to all of us to continue advocating for our patients and highlighting their unmet needs to expand research efforts and ultimately help people live a healthy life.