The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) began a survey in 2002 of residents in the Boston metropolitan area about their urologic symptoms and how those symptoms affect their daily lives. NIDDK aimed to estimate the prevalence of health problems such as IC, urinary incontinence, benign prostatic hyperplasia, prostatitis, hypogonadism, and impaired sexual function.

The reason NIDDK conducted a symptom-based survey is because some of the conditions the study was designed to assess, such as IC, aren’t well recognized. Because there is no definitive test and because the symptoms are variable, patients don’t always recognize they have IC, and doctors don’t always diagnose it. Furthermore, some patients don’t get a diagnosis or appropriate treatment because they lack access to healthcare.

In four diverse Boston area neighborhoods, researcher interviewed some 6,000 men and women, ages 30 to 79, in their homes. One third of the randomly sampled population was African American; one third, Hispanic; and one third, Caucasian.

The investigators conducted a two-hour, in-home, bilingual field interview of all eligible participants, looking at symptoms and asking questions about lifestyle, physical activity, alcohol use, nutrition, demographics, and morbidity. They also conducted a detailed inventory of medications, both prescribed and over-the-counter, and took two non-fasting blood samples for hormone, cholesterol, and lipid levels.

In 2006, when researchers first reported results from the survey, ideas began to change about IC’s prevalence, especially in men. At the American Urological Association’s (AUA’s) annual meeting in 2008, investigators presented some early analyses of the survey. The message on a number of urologic problems, including IC, was that physicians see only the tip of the iceberg—a small proportion of patients with the disorders. Most remain below the surface because the symptoms are not conspicuous, because inadequate health insurance discourages patients from going to doctors, or because of incorrect diagnosis.

Data discussed in one of the presentations indicated that nearly seven percent of women have symptoms of PBS—mild, moderate, or severe (likely IC)—but that only a very small proportion were getting medications. The impact of urinary symptoms on people’s lives is great. For both men and women, the effect of urologic symptoms on their mental health was bigger than any other health problem. For women, the effect of PBS symptoms was as bad as that of diabetes and worse than cancer, stroke, arthritis, or chronic lung disease. The effect on men of prostatitis was even worse—in fact, worse than any other urologic or nonurologic condition. For women, the effect of IC on mental health was worse than any other condition—urologic or not.

Following quickly after the meeting was publication in AUA’s Journal of Urology of BACH study results relating IC to other conditions and medications that might be positive and negative risk factors. The published study indicated that the proportion of men with IC was much higher than previously thought. IC symptoms were only two to three times more common in women than in men in the survey.
Although some results from the BACH survey have been published, researchers can learn more from this survey. The data and the biological samples have been stored for future studies. Researchers can request samples or data from the NIDDK Repository.


Revised Tuesday, May 12th, 2015