Exploring the prevalence of urinary incontinence in multi-ethnic refugee women in Maricopa county, Arizona

The study received approval from the local Institutional Review Board (IRB No. 18-008435). This study was performed in accordance with institutional guidelines. An important first step of this study was acquiring consent from community leaders for survey administration within three public refugee community spaces throughout Maricopa County. Within these spaces, all women 18 years old and older who identified as Middle Eastern, Asian, or African refugees were invited to participate. Pregnant women and those who had given birth in the last three months were excluded. Written informed consent was obtained from all participants before data collection. The researchers followed the principles of the 1964 Declaration of Helsinki.

In this cross-sectional study, female refugee participants were provided with a 20-item questionnaire between July 2021 and November 2021. Participants were given the option of completing the questionnaire in English, Arabic, Burmese, Somali, or Swahili. Study personnel assisted in administering the paper questionnaires. After completion, participants were given a $20 gift card and were encouraged to recruit other members of their communities to participate.

The 20-item questionnaire was translated into Arabic, Burmese, Swahili, and Somali through certified translation companies. The original questionnaire included the Urogenital Distress Inventory-6 (UDI-6), modified UDI-6 questions that further simplified its language, and questions relating to discussions with healthcare providers. Unfortunately, due to a technological error in survey access, an older version of the questionnaire without the UDI-6 was administered to the majority of participants.

For this study, UI was identified by an affirmative response to any of the 6-item Urogenital Distress Inventory (UDI-6) questions or the report of at least one episode of stress or urgency incontinence per month on the questionnaire. The prevalence of UI was estimated in this way. The demographics and frequency of discussing UI symptoms with healthcare providers was also summarized in descriptive statistics (see Tables 1 and 2).

Of the 58 participants, 74% were aged between 18 and 50 years with the remaining 26% of participants over 50 years. Additionally, 79% of participants reported having one or more children.

The sample prevalence of UI was 0.50 [95% CI (0.37, 0.63)]. Of the women who endorsed symptoms of UI, 22.5% reported symptoms of stress incontinence, and 44.9% reported symptoms of urge incontinence. Still, 45 participants (91.8%) reported that they did not use a diaper or pad for UI symptoms.

82.8% of participants reported that they had never discussed these urinary symptoms with their healthcare provider. Furthermore, 77.6% of these women had never been asked about these symptoms by a healthcare provider, although 59.6% of participants reported that they would feel comfortable having these discussions.

There was no significant difference found in age, region of origin, parity, marital status, or income between those with UI and those without. Furthermore, there was no significant difference in income, employment status, health insurance, or years lived in the U.S. between those who were comfortable discussing UI with healthcare providers and those who were not.

More surprising was that 82.8% of participants reported that they had never discussed these urinary symptoms with their healthcare provider. This percentage is higher than the finding in the literature that 25–45% of women with UI symptoms have sought care for these symptoms [18, 19]. Furthermore, the high percentage from this sample cannot be fully attributed to the stigma or embarrassing nature of the UI symptoms, since 59.6% of participants felt comfortable discussing these symptoms with their provider. Rather, there may be additional cultural barriers that make it difficult to bring up these discussions. Instead, they may need to be invited into the discussion. The finding that 77.6% of participants were never asked about these symptoms by a healthcare provider was similar to other findings in the literature indicating that 61.6% of women with UI were not asked about their symptoms by their healthcare provider [20].

A study describing mental health as another prevalent issue in refugee populations recommends broaching these more sensitive topics by taking the time to make the patient comfortable and initiating direct conversations [21]. To address gaps identified in our study, we propose that this recommendation be expanded to conversations about UI. Physicians have a unique opportunity to provide education about an otherwise delicate topic and refugee women may welcome a direct discussion about their urinary symptoms in a private setting. It would be of interest to better categorize any existing challenges to initiating these questions from the perspective of physicians.

Due to the study’s small sample size, we were unable to assess differences between ethnic groups. Furthermore, it would have been beneficial for all participants to have utilized a validated tool such as the UDI-6 to measure the prevalence of urinary incontinence more accurately as well as quantify the symptoms that bother them. Another important consideration for any study involving a sensitive topic such as UI is that there is a risk of respondent bias. Participants in this study were at particularly high risk, since most participants required assistance reading the questionnaire and instead took it orally with the help of research personnel. Additionally, there is a risk for selection bias given that all participants were present at a community center. Participants who were homebound or uncomfortable with being in public may have responded to questions differently. Furthermore, participants recruited by word of mouth may have recommended the study to others whom they knew had UI, deepening the selection bias. Certainly, further exploration is needed on this topic to better understand this gap in healthcare.