Study design, materials and methods
This study is a secondary analysis of electronic survey data collected from adult men and women with anal incontinence about their condition and care seeking experiences. The invitation to participate in the electronic survey was distributed via an electronic mailing list of a company that markets a containment device specifically for anal incontinence; details of survey distribution have been previously described (1). The primary goal of initial data collection was to validate an instrument to quantify barriers to care seeking for anal incontinence among women specifically. The goal of this analysis is to characterize and compare care seeking experiences of adult men and women with anal incontinence, since responses from men were excluded from the instrument validation.
Descriptive analyses characterized respondents' demographics, anal incontinence severity, and rates of and delays in care seeking, using Chi-squared testing to compare categorical variables and t-testing to compare continuous variables between women and men. Similar analyses compared prevalence of specific barriers to care seeking and experiences with care seeking between women and men in the subset of respondents who had previously sought care. A P-value of .05 was considered statistically significant.
Among 1,677 click-throughs, 736 (44%) entered and 548 (75%) completed the survey (458 women, 90 men). The sample was predominantly non-Hispanic white (424/548, 90%) and well-educated, with 376/473 (80%) having attended at least some college; 219/548 (46%) were retired. The majority (329/472, 70%) perceived themselves to be in good, very good, or excellent health; mean Vaizey score was consistent with moderate to severe symptoms: 13.4 (SD 5.3) overall, 13.5 (SD 5.3) in women and 12.7 (SD 5.2) in men, p=.22. The duration of anal incontinence symptoms was similar in women and men, with 36 (7%) having symptoms for less than 1 month; 106 (20%) 1 month to 1 year; 251 (46%) 1 – 5 years; and 151 (28%) more than 5 years (p=.71).
Table 1 reports rates of reported barriers to care seeking for anal incontinence faced by respondents, stratified by sex. Men were statistically significantly more likely to endorse the following barriers: belief that a healthcare provider cannot help with symptoms; belief that symptoms are a normal part of aging; not wanting to pay a co-pay for something that I can manage myself; having symptoms under control; and lack of interference with life. Women were significantly more likely to endorse barriers including: worry about having an accident away from home; fear of surgical treatment; hoping symptoms will go away on their own; and perception that discussion with a healthcare provider would be discouraging. Healthcare provider sex did not represent a barrier to care seeking for anal incontinence for most respondents. Overall, 53% (246/463) respondents did not have a gender preference for their provider. Among those who did, 41% (16/39) of male respondents preferred a male provider and 8% (3/39) preferred a female provider; 45% (190/424) of female respondents preferred a female provider and 2% (8/424) preferred a male provider (p<.001).
Overall, 277/548 (53%) percent of respondents had previously sought care for their anal incontinence: 230/458 (53%) women and 47/90 (54%) men, p=.81. Only 101/524 (19% overall, 15% of men and 20% of women) had ever been asked about anal incontinence by a healthcare provider, and only 43/524 (8%) had ever seen information about anal incontinence in a healthcare provider’s office. The length of time respondents waited prior to discussing their anal incontinence symptoms with a healthcare provider did not differ between men and women (Table 2). Men were more likely than women to report that a healthcare provider did not provide any information about treatment options, and significantly less likely to be told that effective treatments exist.
Interpretation of results
In this sample of over 500 adults with anal incontinence, condition severity and rates of care seeking were similar between men and women. While many barriers were similar in men and women, there were specific barriers to care seeking that differed by sex. While men endorsed more barriers related to normative thinking and limited life impact, women endorsed more barriers related to fear, avoidance, and discouragement. Men were more likely than women to report belief that a healthcare provider could not help as a barrier to care seeking, which is not surprising, given that they were more likely than women to be given no information when discussing their symptoms with a healthcare provider, and less likely to be told that effective treatments exist.
The high rate of care seeking in this sample (>50%) may be a result of their condition severity, since symptom severity correlates with care seeking, coupled with our recruitment strategy using a convenience sample from a voluntary email list of individuals who have purchased containment products for anal incontinence.
While the small number of male compared to female respondents is a limitation, we still had 90 men participate, and thus were able to make meaningful comparisons.
Overall, men and women with anal incontinence seek care at similar rates and after experiencing symptoms for a similar duration of time. While many barriers are common to both men and women, barriers related to normative thinking and limited life impact are more common in men, while barriers related to fear, avoidance, and discouragement are more common in women. These findings suggest that interventions to help facilitate care seeking for anal incontinence should target men and women differently. Further, men are less likely to be given information about treatments for anal incontinence by their healthcare provider, and are significantly less likely to be told that effective treatments exist, suggesting that interventions targeting providers of male patients with incontinence may be indicated to improve outcomes of care seeking attempts.