From April 2019-May 2019, 126 women seeking UI treatment at our institution’s Urology department were eligible for study enrollment. Among these, 107 women declined for reasons including the following: schedule conflicts with support group meeting times, lack of general interest in study participation, and/or travel constraints. The standard of care group initially consisted of 10 women, with 1 participant excluded due to lack of follow up, leaving a remainder of 9 control participants for analysis. Support group participants originally consisted of 8, with 1 participant excluded from analysis because they were unable to attend all support group sessions, leaving a remainder of 7 support group participants who attended all three sessions.
Quantitative Questionnaire Results
The validated questionnaires measured primary outcomes (MESA, UDI-6, OAB-SAT-q, PGI-S, PGI-I, SQoL-F, PHQ-9, IPAQ) and were analyzed with repeated measures of ANOVA models in an intention-to-treat manner. In the PHQ-9 results, the “level of difficulty performing daily tasks” differed between control and intervention participants (p<0.05); control group participants reported performing tasks with less difficulty than support group participants. When comparing the control to intervention groups, there were no statistically significant changes in pre to post intervention scores for any of the validated questionnaires.
Qualitative Support Group Transcript Results
Grounded theory methodology was used to assess innate themes within transcripts and surveys. Several dominant themes emerged from the support group transcriptions. The most frequently identified codes identified during support group discussion included references to UI as a chronic disease, “secrecy of condition,” and social constraints of toileting, as seen in Table 2. “Secrecy of the condition” refers to the support group participants' reported desire to keep their UI a secret from their friends and family members.
The codes were synthesized to identify innate themes within the transcripts. Themes that emerged included an appreciation of support group participation; urinary incontinence as a gendered issue; desire for comprehensive and personalized care; urinary incontinence causing shame, secrecy, and humiliation; lack of public awareness of diagnosis and treatment; the history of negative provider interactions; and preference for physician-led education. Representative quotes illustrating these themes are included in Table 3. Of these, the four most dominant themes included the following:
Appreciation of support group and continued interest in attending sessions
Participants experienced solidarity after support group attendance. Participants were appreciative of the opportunity to express their experience in managing UI with others. Moreover, the reported level of comfort remained constant throughout support group sessions, with a self-reporting level of comfort averaging 4.5 out of 5. The last support group session concluded with a written free-response section for participants to share how their experience could have been improved. All participants noted additional support group sessions would have been beneficial. 100% of participants (n=8) were interested in attending additional sessions if offered in the future.
Urinary incontinence as a gendered issue
Women expressed their feelings that UI affects women more severely than men in their personal and professional lives. Support group participants believed UI management was more difficult to treat than male UI. More than half of the support group participants preferred female urologists (n=7) and believed male providers “lacked relatability” to female health challenges.
Lack of public awareness of diagnosis and treatment
Patients reflected on beliefs regarding the lack of public awareness of UI. Others discussed frustration about needing to teach family and friends about UI management. One participant contrasted the relative ease of breast cancer discussion with friends and family against the shame she felt discussing UI. Participants overwhelmingly believe more education regarding UI should be readily available to the public to decrease stigma and shame.
History of negative provider interactions
Support group participants were prompted to share experiences managing UI in the healthcare setting. More than half of the support group participants (n=6) shared negative past experiences managing UI at previous health institutions. All support group participants (n=8) shared at least one negative experience with a urologist or gynecologist in UI management. Variations in the amount of education received from their provider regarding their diagnosis were expressed amongst support group participants. Some participants (n=4) recalled receiving educational pamphlets at some point in their healthcare journey and referred to them as informational. The remaining support group participants (n=4) did not recall receiving education pamphlets from providers. Participants were asked to identify an individual or provider they felt most comfortable discussing UI. 75% (n=6) patients identified their spouse, while the remaining 25% (n=2) identified their provider.