A random sample of 18,609 of the 99,920 registered female and transgender volunteers between the ages of 18-100 received the request to participate in the survey. Of 18,609 volunteers emailed, 2,144 agreed to participate and 1,747 (ages 18-88 years) completed the survey for a response rate of 9.4% of those contacted, and a completion rate of 81.5% of those who agreed. The response rate to EpiLUTS was 59.6%.
Table 1 shows participant demographics and LUTS characteristics among ResearchMatch volunteers compared with participants in EpiLUTS. ResearchMatch participants had a mean age of 44 years, most had completed some post-high school education, and were White/Caucasian, making the sample younger, more highly-educated with similar racial/ethnic diversity to the EpiLUTS population. Self-reported health, distribution of comorbid conditions and body mass index (BMI) were similar between the two studies while menopausal status and parity were not. ResearchMatch respondents were less likely to be postmenopausal and had lower parity consistent with their younger age. ResearchMatch respondents reported a high prevalence and bother from LUTS similar to EpiLUTS.
Table 2 shows bivariate analysis of participant characteristics and LURN-SI total scores and sub-scores. LURN-SI 29 total scores ranged from 0 to 77; median score (25th%, 75th%) was 17 (11, 26). Notably, the Nocturia sub-score had the highest median score of 29 (14, 57). LURN-SI 29 sub-scores as well as total score increased with age, BMI, medical comorbidity, parity, menopausal status, urinary symptom bother and each decrement in self-reported health, and varied with education and race, thus providing evidence of convergent validity.
Several novel areas of bladder health were evaluated with our survey and may be important in future studies; these include:
(1) Respondents used over 30 different terms to describe urine leakage. Preferred terms included: “Had an accident” (24.0%), “Peed on myself” (22.3%) and “Urinary Incontinence” (19.7%). Less preferred terms: “Urine accident” (3.0%) and “Accidental urine loss” (5.6%). 4% of participants used “Other” terms (e.g. piddle, dribble, drips, drops, sneeze pees, weak bladder, old lady bladder, mommy bladder).
(2) 24.7% of women reported that they experienced bladder pressure during certain activities (10.4% during jumping, 8.5% during running, 5.7% during fast walking, 5% during yoga, 4.6% during hard landings).
(3) 12.9% of participants avoided physical activity and 15.2% interrupted a workout due to LUTS.
(4) Adaptive behaviors were employed during exercise by 32.7% of participants (pad use 18.7%, dark clothing 8.6%, frequent toilet use 16.3%, sitting down to exercise 3.4%).