Uncovering the Hidden Burden of Benign Genitourinary Conditions

Event Details

Background

Benign urologic conditions (BUCs)—including urinary tract infections, urologic chronic pelvic pain syndrome, erectile dysfunction (ED), conditions associated with lower urinary tract symptoms (e.g., urinary incontinence, frequency, urgency, nocturia), and urinary stone disease (USD)—are common. Existing epidemiological data suggest that BUCs may play a role in development of obesity, diabetes, depression, and hypertension and may be early manifestations of systemic conditions (e.g., ED and cardiovascular disease; nocturia and chronic kidney disease). Yet BUCs are rarely considered in the context of overall health or recognized as potential factors on the casual pathway of research on these conditions. As a result, the true burden of BUCs remains hidden. We lack the data to understand the total burden on these conditions in terms of combined prevalence; economic costs; and physical, mental, and social health consequences. Ability to understand this burden is complicated by (1) low recognition and diagnosis of BUCs (with the exception of USD) in the clinical setting, as patients often don’t seek care; (2) lack of an existing comprehensive measure to screen for patients with BUCs; and (3) a history of studying BUCs in silos—with each condition or symptom group studied separately from the others.

Meeting Objectives

The purpose of the workshop is to convene an interdisciplinary group of researchers and health professionals—including urologists and urogynecologists working in traditional benign urologic condition (BUC) silos, primary care providers, measurement and data scientists, basic scientists, economists, policy experts, public health professionals, and others—to answer key questions, including the following:

• What data are needed to understand the hidden burden of BUCs?
• How can these data be captured in a feasible manner to build a complete picture of the burden of BUCs? Are new tools needed for the data capture?

Registration Deadline

September 27, 2019

Agenda

October 7, 2019

8:30 a.m. - 8:35 a.m.

Welcome Remarks
Griffin P. Rodgers, M.D., MACP, Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

8:35 a.m. - 8:45 a.m.

Setting the Stage: Meeting Overview and Objectives
Tamara Bavendam, M.D., M.S., NIDDK

8:45 a.m. - 8:55 a.m.

Raising the Profile of Genitourinary (GU) Conditions
Wanda Jones, Dr.P.H., Office of the Assistant Secretary for Health

8:55 a.m. - 9:25 a.m.

Background on Physiology of Conditions
Richard Lee, M.D., M.B.A., Weill Cornell College of Medicine

9:25 a.m. - 10:00 a.m.

Patient and Caregiver Perspectives

10:00 a.m. - 10:15 a.m.

Break

Lightning Panel of Agency Roles

10:15 a.m. - 11:30 a.m.

Agency for Healthcare Research and Quality
Arlene Bierman, M.D., M.S.

U.S. Environmental Protection Agency (EPA)
David E. Meyer, Ph.D.

Health Resources and Services Administration
Joan Weiss, Ph.D., RN, CRNP

Office of Women’s Health, U.S. Department of Health and Human Services
Dorothy Fink, M.D.

Office of Research on Women’s Health, National Institutes of Health (NIH)
Lisa Begg, Dr.P.H., RN

Eunice Kennedy Shriver National Institute of Child Health and Human Development
Donna Mazloomdoost, M.D.

National Institute on Aging
Marcel Salive, M.D., M.P.H.

National Institute of Nursing Research
Karen Huss, Ph.D., RN, ANP-BC, FAAN, FAAAAI, FAHA

NIDDK
Ziya Kirkali, M.D.

End Lightning Panel of Agency Roles

11:30 a.m. - 11:50 a.m.

How Do We Conceptualize the Hidden Burden?
Sonya Brady, Ph.D., University of Minnesota

11:50 a.m. - 12:55 p.m.

Lunch

Panel: Components of Burden

12:55 p.m. - 1:15 p.m.

Prevalence of GU Conditions
Brian Matlaga, M.D., M.P.H., Johns Hopkins University

1:15 p.m. - 1:35 p.m.

Methodologic Challenges of Understanding Economic Burden
Todd Wagner, Ph.D., Stanford University

1:35 p.m. - 1:55 p.m.

Quality of Life and Social Impacts
Christine K. Bradway, Ph.D., RN, CRNP, FAAN, University of Pennsylvania

1:55 p.m. - 2:15 p.m.

Environmental Burden
David Meyer, Ph.D., EPA

2:15p.m. - 2:35 p.m.

Increased Risk of Comorbid Conditions
Ted Johnson, M.D., Emory University

2:35 p.m. - 3:15 p.m.

Discussion

End Panel: Components of Burden

3:15 p.m. - 3:20 p.m.

Charge to Breakout Groups
Jenna Norton, M.P.H., NIDDK

3:20 p.m. - 3:40 p.m.

Break

3:40 p.m. - 5:30 p.m.

Breakout Groups: What Do We Measure Across Each Burden Domain? (Select One)

1. Prevalence—Emphasize Underreported Conditions and Underrepresented People
2. Quality of Life/Social Impacts on Patients and Caregivers
3. Economic Costs
4. Environmental Burdens
5. Comorbid Conditions Impacted by Benign Urologic Conditions

5:30 p.m. - 6:00 p.m.

Adjourn

6:00 p.m.

Networking Dinner (Details Yet to Be Finalized)

October 8, 2019

8:00 a.m. - 9:30 a.m.

Breakout Group Reports
(15 minutes per group and brief comments/discussion)

9:30 a.m. - 9:45 a.m.

Break

Measuring Urologic Conditions in Diverse Specialty Research

9:45 a.m. - 10:00 a.m.

Obesity and Diabetes
Leslee Subak, M.D., Stanford University School of Medicine
Nicole Ehrhardt, M.D., The George Washington University

10:00 a.m. - 10:15 a.m.

Cardiology
Jason Lazar, M.D., State University of New York, Downtown Medical State

10:15 a.m. - 10:30 a.m.

Mental Health
C. Neill Epperson, M.D., University of Colorado

10:30 a.m. - 10:45 a.m.

Geriatrics
Lona Mody, M.D., University of Michigan

10:45 a.m. - 11:00 a.m.

Discussion

End Measuring Urologic Conditions in Diverse Specialty Research

11:00 a.m. - 11:20 a.m.

Measurement Science and Application in Benign GU Conditions
Kathryn Flynn, Ph.D., Medical College of Wisconsin

11:20 a.m. - 1:15 p.m.

Working Lunch—Breakout Groups
How Do We Measure Across Each Burden Domain? (Select One)

1. Prevalence—Emphasize Underreported Conditions and Underrepresented People
   1. Can we measure urinary tract infections, stones and urologic chronic pelvic pain syndrome sufficiently via administrative data from the electronic health record?
   2. What existing data can we gather from the National Health and Nutrition Examination Survey (other surveillance efforts) for underdiagnosed conditions?
   3. Do we need or could we develop a comprehensive measure to screen for all GU conditions?
   4. What existing measures can we leverage?
2. Quality of Life/Social Impacts on Patients and Caregivers
3. Economic Costs
4. Environmental Burdens
5. Comorbid Conditions Impacted by Benign Urologic Conditions

1:15 p.m. - 2:45 p.m.

Mapping the Path Forward as a Group
Tamara Bavendam, M.D., NIDDK
Jenna Norton, M.P.H., NIDDK
Sonya Brady, Ph.D., University of Minnesota

2:45 p.m. - 3:00 p.m.

Closing Remarks

3:00 p.m.

Adjournment