Do Women have Adequate Knowledge about Pelvic Floor Dysfunctions? A Systematic Review

Objective We sought to investigate whether women present adequate knowledge of the main pelvic floor disorders (PFDs) (urinary incontinence – UI, fecal incontinence – FI, and pelvic organ prolapse – POP). Data sources A systematic review was performed in the MEDLINE, PEDro, CENTRAL, and Cochrane databases for publications from inception to April 2018. Selection of studies A total of 3,125 studies were reviewed. Meta-analysis was not possible due to the heterogeneity of primary outcomes and the diversity of instruments for measuring knowledge. The quality of the articles included in the analysis was evaluated with the Newcastle-Ottawa Scale (NOS) adapted for cross-sectional studies. Data collection Two authors performed data extraction into a standardized spreadsheet. Data synthesis Nineteen studies were included, comprising 11,512 women. About the methodological quality (NOS), most of the studies (n = 11) presented a total score of 6 out of 10. Validated questionnaires and designed pilot-tested forms were the most frequently used ways of assessing knowledge. Some studies were stratified by race, age, or group minorities. The most used questionnaire was the prolapse and incontinence knowledge questionnaire (PIKQ) (n = 5). Knowledge and/or awareness regarding PFD was low to moderate among the studies. Urinary incontinence was the most prevalent PFD investigated, and the most important risk factors associated with the lack of knowledge of the pelvic floor were: African-American ethnicity (n = 3), low educational level (n = 4), low access to information (n = 5) and socioeconomic status (n = 3). Conclusion Most women have a gap in the knowledge of pelvic floor muscle dysfunctions, do not understand their treatment options, and are not able to identify risk factors for these disorders.


Introduction
Pelvic floor muscle (PFM) dysfunctions have a negative impact in the quality of life of many women. These dysfunctions mainly include pelvic organ prolapse (POP), urinary incontinence (UI), and fecal incontinence (FI). 1 Female stress urinary incontinence and pelvic organ prolapse (POP) are prevalent conditions and are rarely associated with severe comorbidities, despite the costs and restriction caused to women's lives. 2 The prevalence of POP varies from 2 (symptomatic women) to 50% o(women with clinically insignificant POP). 3 Meanwhile, the prevalence of UI reaches indices varying between 10 and 58% in women living at community settings and 50 to 84% in women residing at long-permanence institutions. 4 Annual health costs related to UI care in the USA exceed 16 billion dollars. Despite the prevalence and the cost for treating PFM dysfunctions, many women do not receive adequate attention. Less than 50% of incontinent women seek for medical treatment. 2 Pelvic floor muscle treatment (PFMT), bladder training, and other conservative approaches are considered the first line of treatment for women who suffer PFM dysfunctions. However, many of these women do not have information or knowledge regarding conservative treatment for PFM disorders. 5 There are studies that have addressed the knowledge of patients regarding these dysfunctions, but with no compiled data on this matter. This increases the chances of successful therapy, changes in life habits, and reductions on disease's symptoma. 2 Thus, our study aimed to perform a systematic review of women's knowledge about the pelvic floor structures (muscles, ligaments, organs), its functions, dysfunctions, and possible conservative treatments for each disorder by measurement through surveys, questionnaires, or any available instrument within the literature.

Methods Eligibility Criteria and Study Selection
The eligibility criteria were scientific articles and juts crosssectional studies (cross-sectional scientifics articles) in English language that investigated women's knowledge regarding the pelvic floor (PF) functions and/or dysfunctions and possible conservative treatments for them. Studies that aimed to focus on health professionals or that were not specifically aiming to understand women's knowledge of the pelvic floor, studies involving pregnant and postpartum patients, those with qualitative designs, or quantitative studies that did not separate data according to gender were excluded from the analysis.

Information Sources and Search
The last literature search was performed on April 2018 and included studies from inception. The consulted databases were: Medline/PubMed, PEDro, Cochrane Central Register of
Controlled Trials and Cochrane Database of Systematic Reviews. The overall search strategy used was (knowledge OR comprehension OR education OR education level) (urinary incontinence OR pelvic organ prolapse OR genital prolapse OR stress urinary incontinence OR urgency urinary incontinence OR mixed urinary incontinence OR cystocele OR rectocele OR apical prolapse OR uterine prolapse OR overactive bladder OR detrusor overactivity) NOT (m?n OR animal Ã ). A detailed example of search strategy (Pubmed) is illustrated in Appendix 1.

Screening and Data Extraction
Data search was performed by authors (J. F. F. and T. D. S.), and if a study was not a common decision to include or exclude, a third author (L. G. O. B.) was included to come to a consensus. A standardized data extraction form was used to collect the following data: authors, year of publication, journal, country of origin, sample, age (years), objectives, outcome measure, and results/conclusions. Data extraction was performed by two independent raters (J. F. F. and T. D. S.).

Outcomes
The primary outcome was knowledge regarding the pelvic floor muscles, ligaments or organs, and related disorders, measured by a questionnaire that could be previously prepared (e.g. incontinence quiz, prolapse and incontinence knowledge questionnaire) or prepared by the authors (previously or not pilot-tested). Knowledge could also be assessed with or without attitude and/or practice (Knowledge, attitude, and practice -KAP) format. Answers for knowledge could be categorical or as continuous variable (e.g. score results).

Risk of Bias Assessment and Quantitative Analysis
Assessment of methodological quality was performed by the Newcastle-Ottawa Scale adapted for cross-sectional studies. This scale was originally developed to assess the quality of observational studies and contains eight items that assesses three domains: selection, comparability and outcome. The score was divided into: good quality (3-5 stars in selection, 1-2 stars in comparability, 2-3 outcome), fair quality (2 stars in selection, 1-2 in comparability and 2-3 in outcome) and poor quality (0-1 star in selection, 0 star in comparability and 0-1 star in outcome). 6,7 As data were extracted and described, heterogeneity between the outcomes did not reach possibility for pooling data and performing subgroup analysis or metanalysis. Results were displayed in tables in a synthesized format.

Results
Characteristics of the Selected Studies and Newcastle-Ottawa Scale Quality Assessment ►Figure 1 shows all the pathways for this systematic review. Database searches identified a total of 3,125 studies with no duplicates, and after excluding title and abstract, 68 studies remained for screening. The reasons for exclusion are explained in the flowchart. Despite having found 19 articles for data extraction, some aspects of these studies were highly heterogeneous, such as sampling, methods of investigating the subjects' knowledge, and knowledge as primary outcome.
There were risk factors that were mostly related to the lack of knowledge of pelvic floor (PF) such as educational level, access to information, socioeconomic status, age and race (►Table 3).

Knowledge about Pelvic Floor Anatomy and Function
Four studies were included, 8,9,11,12 one 11 assessed the knowledge of nulliparous women regarding the pelvic floor functions. It was found that women presented some knowledge regarding some functions of the pelvic floor, such as pelvic floor structure and function, since 93% of women knew about the existence of muscles in this region, and 92% managed to locate this region. However, few of them had knowledge about the role of pelvic floor anatomy on sexual function (6.2-64.3%). Furthermore, most of them did not know how many openings exist in the female pelvic floor. It was concluded that most of the patients (81%) had never received information regarding the pelvic floor.
Arbuckle et al 9 analyzed the prevalence and the knowledge of PFD in adolescents (14-21 years). They have observed that    After stratifying the groups by age and educational level, it was found that, when compared to adolescents, female young adults were more prone to receive education regarding UI, FI, and POP. The same association was found for the group of  women with higher education, who had significantly higher rates of willingness to receiving information (UI ¼ 31.5% vs 8.4%, p 0.0001; FI ¼ 24% vs 5.4%, p 0.0001; POP ¼ 27.6% vs 8.2%, p 0.0001) while teenagers were not aware of most of pelvic dysfunctions. Freitas et al 8 have analyzed the knowledge of Brazilian women about PFM and its relationship with the capacity to contract the PFM. Most of women (55%) presented a low level of knowledge, and 79.7% did not know the PFM functions. Moreover, a low correlation between PFM knowledge and age was found (p ¼ 0.01), and there was a statistically significant difference between the years of education and previous practice of PFMT.

Knowledge about UI
Eight studies 10,15,19,20,22,23,25,26 aimed to investigate women's knowledge about UI, and all of them have shown that women had a low knowledge about UI. Most of the studies have also shown that treatment for UI and associated risk factors for UI were not fully understood by the patients, regardless of age and country of origin. Women perceived some risk factors for UI. Day et al 26 and Keller 25 have found that women described aging as an important factor for UI. Regarding treatment, women did not look for treatment, and the following reasons were pointed out: lack of knowledge, embarrassment, and UI seen as a minor health issue. These findings were similar to another study performed by Cardoso et al, 10 in which knowledge, attitude, and practice regarding UI was investigated in high impact athletes. Despite 70% of them have complained about UI during exercise, 96% did not consider this as a problem worthy of seeking help, and none had ever told her coach about the UI.

Knowledge about POP
One study has only focused on POP. 18 Good et al 18 have found that American women presented a lack of knowledge regarding POP, with 44% of them scoring the questionnaire about this subject. Another study 16 has focused only on uterine prolapse (UP). Shrestha et al 16 have observed knowledge about UP on married women at reproductive age. Half of them have never heard about UP, and within the group that presented some knowledge about UP, only 37.5% presented a satisfactory level. Women that were living in an urban area presented more chance to have knowledge about UP, as well as higher educational level.

Knowledge about UI and POP
Two studies 13,17 have analyzed UI and POP within their objectives, one of which has compared its results with those of control groups. Dunivan et al 13 used a control group formed by women with PFDs, because they assumed they would have better knowledge if informed during consultations, and compared with healthy women and elderly American-Indian women. The former group presented a higher knowledge score when compared to the other groups. Mandimika et al 17 found that approximately one third (32.2%) of the participants reported having a history of UI; however, only 4.6% of all women reported being treated for this condition; Also, 6% of the women reported having a problem with POP, but only 4.0% of them reported having been treated by POP. Moreover, 71.2% of the subjects lacked UI proficiency (< 80% was correct), whereas 48.1% lacked proficiency in POP knowledge (< 50% was correct). Regarding the association of risk factors with UI or POP, educational level was the only factor associated with knowledge about UI.

Knowledge about UI and POP According to Race
Some studies have related the l of treatment seeking for pelvic floor dysfunctions to minority groups. Three studies 14,21,24 assessed the knowledge separating the subjects by racial groups. Mandimika et al 14 found that African-American women were more prone to not having adequate knowledge about UI and the etiology and treatment of POP. Furthermore, women did not know that PFMs could be useful for treating UI. Shah et al 21 identified a higher knowledge level for white women when compared with Asian, Hispanic, and African-American women. Kubik et al 24 perceived that white women presented a higher score on the incontinence quiz questionnaire compared with other racial groups (6.16 AE 2.86 vs 5.46 AE 2.66, p ¼ 0.71) (Hispanic, African-American). Furthermore, higher socioeconomic status (SES) was associated with higher incontinence quiz total score.

Discussion
This systematic review showed that women's knowledge of PFDs was very limited, and that it could be influenced by socioeconomic variables, such as racial groups. All included studies were quantitative, but this evidence was also found on qualitative studies. Anger et al 27 performed a focus group of women with overactive bladder to better understand the experiences and level of understanding related to the problem. As a result, it was found that women had no understanding of the cause of overactive bladder, chronicity, and the rationale for various diagnostic tests.
Women's beliefs may also give them a chance to reflect about the cause of their disease. Melville et al 28 have found that 50% of women suggested an inherent problem with the pelvic floor or bladder as a cause for their symptoms. Obviously, knowledge is connected to the educational and socioeconomic level; thus, cultural aspects are not only the main factor influencing beliefs.
Race is a variable with a possible effect modification. Another point for discussion is that the percentage of surgeries performed for PFDs may be different among racial groups, and this may influence the prevalence of PFDs. If we know that PFDs may differ among racial groups, it will be possible to promote aims focusing on education for this population. 14 Further cohort studies are necessary to understand this variable as we know that cross-sectional studies cannot establish the route of causality between one variable and the outcome.
Only half or less of women with UI discusses their condition with a health professional. 29 Even when health professionals are consulted, there are surprisingly low rates of treatment of women with symptoms of UI. 30 In studies that investigate the reasons why women do not seek treatment for UI, several other themes were identified: shame, belief that incontinence is part of the normal aging process, sensation that they can handle the problem on their own, and low expectations of benefits with treatment. [31][32][33][34] This information is related with the findings of this review, since the studies that focus on the lack of knowledge have identified the lack of search for treatment due to lack of knowledge, embarrassment, and because some women have considered UI as a small problem and a "normal" part of the aging process.
Jácome et al 35 observed a high prevalence (30.2-35.8%) of UI in athletes; however, more than half (61.4%) of the athletes had never talked to anyone about their leakage, and 9 (20.4%) reported having discussed the problem with a friend. And when urine loss occurred, the athletes felt concerned, annoyed, frustrated, and fearful that a new activity might trigger another leakage but with no current impact on their daily lives.
It is important to highlight that patients with chronic diseases, such as overactive bladder and UI, seek different information from patients with acute illnesses, regarding diagnosis and treatments available. Furthermore, a study of patients with heart failure found that patients with good disease control have achieved better functional status, suffer less anxiety, and present fewer reports of depression and better quality of life than patients with low perceived control of disease. 36 Liao et al 37 administered an educational 4-hour program with pelvic muscle training to a cohort of 55 women with UI in Taiwan. The researchers applied a knowledge questionnaire containing 20 statements of yes/no questions as well as an index of severity of UI and self-perceived severity of UI to patients before and 8 weeks after the educational intervention. The participants showed significant improvement of knowledge scores and reported a significant decrease in the severity of UI.
In a study conducted over a decade ago, Branch et al 38 found substantial gaps in knowledge about UI among community-dwelling individuals aged 65 years and concluded that levels of knowledge about UI should be increased to ensure that proper treatment and management are achieved. The lack of knowledge about the pelvic floor in women demonstrates the necessity of creating educational programs for health professionals on this topic.
Stadnicka et al 39 aimed to perform a prophylactic program for Stress Urinary Incontinence (SUI). Through literature review and results of their own investigations, it is concluded that a program for prevention of SUI should include mainly: [1] preparation of health professionals to spread health education among women in the prevention of SUI; [2] the preparation of appropriate educational materials in the form of brochures, leaflets, posters of information on symptoms, causes and prevention of UI indicates that health care available to all women when the disease is suspected or institutions already present, [3] the spread problems related to SUI in the means of mass communication that provide information to a wide audience in order to raise awareness about the significance of this social problem and also in order to break the stereotype associated with this disease, [4] clarifying about the importance of performing exercises for the PFM during pregnancy, and menopause to maintain its own function, and [5] focus on the possibilities of changes in factors that predispose SUI in order to reduce or eliminate these factors.
According to Herbruck, 40 the costs of UI are financially and socially significant to those who are living with its effects. The determination of possible modifiable factors that cause changes in the UI and in the PF is complicated. A reasonable starting point could be counseling patients about the importance of education and awareness of the PF to improve their quality of life. In addition, health professionals in general should get closely involved to the theme in order to provide quality information that improves with reverse in preventive and rehabilitative care female UI. These data confirm the findings of Kang, 20 that suggest that the absence of a sharing decision-making process may contribute for an inadequate interpretation of patient symptoms.
The limitations of this review are, mainly, the heterogeneity of measuring knowledge, the non-stratification of baseline sociodemographic variables, such as education level, and the response bias that is implicit to any study that assesses knowledge; maybe these percentages are worse than the findings from each study. It should be highlighted that the research on the PF knowledge had a specific validated questionnaire, and that the interviews between professional and patients were more objective; thus, future studies could reproduce them.
The knowledge about PFM is important for women to know their own bodies, easing comprehension about their orientations and proposed treatment by health professionals. Communication and information are essential for the treatment of patients with PFDs. Correct information is important to obtain consent from patients about proposed therapy during treatment, the increase of participation, reduction of anxiety, increase of knowledge about the disease, and the satisfaction of the patients with the obtained results, which might increase the chances of therapeutic success. This knowledge about the PF showed to be increased through several programs, such as PFMT, behavioral modification, and educational workshops by physicians, physiotherapists and/or nurses.
According to this review, there is a lack of data on the knowledge of adult women regarding to the physiological role of the PF and the ability to contract the PFM. It is important that women receive information on the PFM function and dysfunction. It is also essential to establish models of preventive and rehabilitation activities to be included in women's care in all health care levels.

Conclusion
Knowledge of the PFM is necessary for the understanding of women over their own bodies, facilitating the understanding of the guidelines and treatments offered by health professionals. Communication and information are essential in the treatment of patients with PFDs. The correct information is important in obtaining the patient's consent on the proposed therapy in treatment, increasing their participation, reducing anxiety, providing knowledge about the disease and assessing the patients' satisfaction with the results.