Hypothesis / aims of study
Despite the impact of lower urinary tract symptoms (LUTS) including urinary incontinence (UI) on quality of life (QoL), delays in health care seeking in those with these conditions have been well described. In a previous Canadian epidemiological study on the prevalence of LUTS, 93.7% of the entire sample (those with and without bladder symptoms) felt that people with incontinence should seek medical advice, but only 41.4% knew what help was available; 48.9% of the participants with UI or LUTS had sought health care . These findings are discrepant from previous studies, with most citing prevalence of health care seeking between 33 to 42% . Qualitative studies have described some of the barriers associated with seeking health care, including the belief that it is a normal part of aging or natural result of childbirth, or a lack of awareness about available treatments.
The aim of this study was to further explore, in a nationally representative sample, health care seeking behaviours of men and women with UI, including awareness of treatments, what health care was sought and from whom, reasons health care was sought, resources used for information, and incontinence as a taboo subject.
Study design, materials and methods
A nationally representative adult (18 years and above) sample (age, region, sex) of 1000 people were surveyed by random digit dialling during May 2017. The sample included 211 participants who experienced urinary symptoms, either overactive bladder (OAB), stress urinary incontinence (SUI) or both. A 20-minute questionnaire based upon the previous EPIC  survey with additional questions on awareness, access, barriers to care, stigma and healthcare experience was administered to this sample. Resulting data were coded, entered into a database and analysed using SPSS v25 (IBM,Cary, Ind.). Descriptive statistics were used to illustrate the data, comparisons were made using parametric or non-parametric statistics according to the underlying distribution of the data. The margin of error associated with a probability-based sample of 1,000 is +/-3.1%, 19 times out of 20.
Of the 1000 people initially contacted, 78.4% had heard the term “incontinence” (84.2% of women 72.1% of men); 47.7% defined it as an “inability to hold one’s bladder” and 26.5% as “involuntary urine leakage”. In searching for information on their urinary symptoms, 13.6% first used a Google search, 12.6% consulted a friend or family member, and 11.8% asked a family doctor. 3.8% used social media. In this sample 35.6% of 1000 believed incontinence to be normal, 90.6% believed old age to be a cause, 80.8% weak muscles, 72.9% childbirth, and 77.2% prostate problems. 93.7% of respondents felt that people with incontinence should seek medical advice, but only 41.4% knew what help was available or what could be done for symptoms (54.3% of women, 27.4% of men).
Of the 211 participants with urinary symptoms (OAB, SUI or both), 48.9% had initiated a discussion with a health care professional (HCP), 44.1% of males and 50.4% of females. 86.2% had discussed with a doctor, and another 5.4% with a nurse or pharmacist. 43.7% had discussed their symptoms within the last year. Open-ended responses to why the participant brought up the discussion with a HCP included comments on degree of bother or annoyance, feeling that their symptom was abnormal, worry, worsening of symptoms, effect on quality of life, and wanting to know possible treatment options. Of the 103 participants who responded to the follow-up question ‘what did the HCP tell you that you had?’, 12 were told it was ‘normal’ or ‘due to aging’ by their consulted HCP, this was more likely to occur in women than men (11 vs.1). 7.8% said they would have sought help sooner if they’d known that things could be done to improve their condition, 7.8% if they’d realised sooner that this was a medical condition, and 5.8% if they’d known about treatment options.
Regarding the taboo of urinary symptoms, respondents believed they would be more comfortable talking about incontinence than a sexually transmitted infection (50.5% vs. 23.4%), addiction (42.5% vs. 32.8%), or decreased sexual desire (48.9% vs. 24.7%), though less comfortable than talking about depression (31.1% vs. 43.3%). These differences did vary by gender and age group.
Interpretation of results
In this sample, 48.9% of those with urinary symptoms (stress urinary incontinence, overactive bladder or both) had sought health care, which is higher than in previous studies. Reasons for health care seeking included degree of bother, impact on quality of life, or perception that the symptom was not normal. Despite this, over one third of the total sample believed urinary incontinence to be normal, and 90.6% believed old age to be a cause. This perception was apparently also held by HCPs, as 11 people were told that their urinary symptom was “normal” or “due to their age”. More participants initially looked for information using a Google search or family member/friend than their family doctor. There is an acknowledgement that urinary symptoms represent an important medical condition with almost all participants, regardless of presence urinary symptoms, believing that people should seek help for their symptoms.
Despite only half of participants with urinary symptoms seeking treatment, and less than half of the population representative sample being aware of treatment options, these numbers represent an improvement from previous studies. This may indicate success in increasing the awareness of UI and LUTS by public service campaigns, local workshops, and HCP knowledge. In this sample, UI was less of a taboo subject than has been posited in previous studies. This may also reflect increased awareness and opens opportunities for Canadians to continue the discussion.