Engaging Women in Pelvic Floor Disorders Research Using the Internet

Abstract

Objectives The objective of this study were (1) to assess the feasibility of using online platforms as recruitment tools for pelvic floor disorder studies and (2) to compare the prevalence of symptoms of incontinence and care-seeking behavior by online platform to previously published prevalence estimates. Methods We conducted a cross-sectional study among women to assess the prevalence of incontinence symptoms, level of bother, and care-seeking behavior. Participants were recruited through Facebook ads, ResearchMatch, or Reddit. The effectiveness of Facebook ads was assessed using the click through rate and an overall completion rate (number of completes over number of times an ad was shown). A nontargeted ad was posted to a Reddit thread in which research opportunities are advertised. For ResearchMatch, investigators sent a recruitment email. Effectiveness of this method was assessed by observing how many women completed the survey compared with the number of women who received it. Results Among the 7361 women who initiated the questionnaire, 6650 (90%) completed it. A majority of participants were recruited through ResearchMatch. Online platforms were successful in recruiting women across a wide age range (ages, 18–93 years). The overall prevalence of incontinence was 46.1% with women 45 years and older having the highest prevalence (64.6%). Common reasons for not seeking care included “not bothersome enough,” “other health problems,” and “being unsure about treatment.” Conclusions Internet-based recruitment was found to be feasible. The prevalence of incontinence was higher than has been reported in other population-based samples. Significant barriers to care exist, and further studies should focus on educational strategies.

Hungarian Women’s Health Care Seeking Behavior and Knowledge of Urinary Incontinence and Pelvic Organ Prolapse: A Cross-Sectional Study

“…In accordance with the present findings, previous studies have found that health care seeking for UI among women was low. 10 , 25 , 26 Based on previous findings, several barriers to care seeking for UI had been identified: increased level of symptom bother, 10 , 25 , 27 , 28 misconceptions and inadequate knowledge about UI, 15 , 25 shame, embarrassment, 27 lack of time, 29 fear of doctor or surgery, 27 , 30 and costs. 10 , 27 The lack of time on the part of the patient and within the framework of health care, fear, embarrassment, and shame can be decreased by using a self-administered questionnaire, for example, the Australian Pelvic Floor Questionnaire 31 , 32 completed during the waiting period can reduce the patient’s embarrassment, the time, and the costs of care.…”

Survey of lower urinary tract symptoms in United States women using the new lower urinary tract dysfunction research Network‐Symptom Index 29 (LURN‐SI‐29) and a national research registry

“…Initial work with online platforms for pelvic floor disorders suggest feasibility. 8 These platforms are prime for studies to further understand the usability and performance of newly developed research instruments in additional populations and to generate novel hypotheses for future research. The objectives of this online bladder health survey were to: (1) determine the feasibility of using ResearchMatch for LUTS research in women; (2) pilot the newly developed LURN-SI-29 in a nonclinical population to determine whether it replicates known associations (convergent validity), and (3) explore novel aspects of bladder health (including terminology, contextual experiences, and adaptive behaviors) in community-based women.…”

“…Online research communities are becoming increasingly common and provide a low‐cost resource to researchers and low burden opportunity for volunteers. Initial work with online platforms for pelvic floor disorders suggest feasibility 8 . These platforms are prime for studies to further understand the usability and performance of newly developed research instruments in additional populations and to generate novel hypotheses for future research.…”