Public understanding of female genital anatomy and pelvic organ prolapse (POP); a questionnaire-based pilot study

Health literacy is defined as “the extent to which people are able to understand and act upon health information” [1]. It has been shown to affect health-seeking behaviour, engagement with treatment, preparedness for surgery, patient satisfaction and litigation [2‐6]. Specifically in surgical patients, poor health literacy has been shown to reduce adherence to perioperative instructions and is associated with poor outcomes [7].

The recent Independent Medicines and Medical Devices Safety Review (Cumberlege Report) included extensive investigation of healthcare provision for women affected by mesh complications in the UK. One of the key themes highlighted in this report was failure of informed consent [1, 5]. A key factor of informed consent is understanding of the condition and also the normal anatomy and physiology.

Concerns have repeatedly been raised that women do not receive adequate information, counselling and choice prior to surgical intervention for pelvic organ prolapse (POP) [8‐10]. POP has been described as a “disease of shame and silence” in which many women feel uncomfortable discussing their condition with friends, family and also healthcare professionals [11, 12]. If women are to participate in shared decision-making for POP interventions, there first needs to be a basic understanding of normal anatomy and pathophysiology of the disease process. Furthermore, complex treatment options must be discussed at an understandable level to facilitate discussion. However, the level of health literacy regarding healthy female genital anatomy in the general population is unclear, and approximately half of self-reported health-related quality of life questionnaires of pelvic floor dysfunction (PFD) are above the advised readability levels [13]. In an effort to improve patient understanding, the National Institute for Health and Care Excellence (NICE) also published Decision Aids to help patients decide which prolapse or incontinence treatment options best suit them as individuals [14‐16]. However, these do not address basic anatomical structures.

Women can have poor understanding of PFD despite high health literacy scores [17]. Women are also less likely to understand the actual condition of POP than the possible treatments available [12]. It has been suggested that this is because more time is spent, by healthcare professionals, discussing the treatment rather than the condition itself [12] or due to patients’ struggle to grasp certain diagnostic terms [18]. However, it may also be due to poor background understanding of female genital anatomy among the public in general.

In this study we aimed to examine the general public’s knowledge of normal external female genital anatomy and their understanding of pelvic organ prolapse in comparison to their understanding of other general medical or gynaecological conditions. We hypothesised that males may understand less about these topics and thus included them in our study.

A secondary aim was to compare such knowledge and understanding between those attending a general outpatients department (OPD) (males and females) and specialist urogynaecology (UG) clinics (females only).

Participants were asked to complete the questionnaire (ethical approval reference: 17/NW/0215) on their own and reassured that it was not a test. The questionnaire (S1) had undergone content validation through internal peer review. It recorded participants’ demographics (age, gender, education, occupation, ethnicity, main language spoken, number of children), whether they had been treated for prolapse and understanding of external female anatomy, general medical/gynaecological conditions and POP.

Descriptive statistics were used to summarize participant demographics.

One hundred ninety-one participants returned the questionnaire (31 from UG clinic, 160 from OPD, of which 20 were males). Out of the 171 female participants, 20 (12%) had previously been treated for POP, while 12 (7%) did not know if that was the case. Table 2 summarizes participants’ demographics.

Our study has demonstrated that people attending urogynaecology and general outpatient clinics have poor understanding of female external genital anatomy and prolapse. Women identified more anatomical structures than men; however, the actual number of structures identified was small (median 1 for women and 0 for men). There was obvious confusion between the urethra and clitoris and other common misconceptions included the “cervix” being one of external female genital “holes”.

To our knowledge, this is the first study that explores understanding of female genital anatomy and POP among the general public, both male and female, in the UK. Our study also attempted to confirm the degree of understanding with secondary questions and compared the level of understanding with other medical conditions.

For female external genitalia, just 9% of participants labelled all seven correct, with urethra and clitoris correctly identified by 51% and 63%, respectively. Similarly, a study of 278 women in the USA recruited from a women’s clinic reported correct identification of female external anatomical structures by 67% of participants, with the urethra and clitoris identified by 55% and 57%, respectively [21], which are consistent with our findings. Similar to our findings, the highest identification rates from their study were for the anus (90%) and vagina (84%), albeit our rates were lower, 67% and 71%, respectively. However, their participants were presented with options to choose from to label the diagram. In our study, no options were given; hence, one might expect a lower result and possibly ours represents a more accurate assessment of true knowledge.

We also found far fewer people had an understanding of prolapse compared to the conditions diabetes or stroke. However, fibroids were even less frequently understood, suggesting there is poor knowledge of women’s health issues in general. A study by Weinman et al. in the USA supports this finding. They reported that only 40% of the general public (n = 133) correctly identified the site of an ovary on a female body diagram [22]. Another by Lekovic et al. demonstrated that women who had had a previous hysterectomy had similar understanding of physiological functions of female reproductive organs as those who had not, and in both groups, over half of the participants thought pre-menopausal women who have had a total hysterectomy continue to have periods afterwards and that the uterus was the organ producing oestrogen [23]. This is concerning as it implies that women may undergo operations for conditions they do not understand.

We expected that women attending UG would have more understanding of female genital anatomy due to their presenting condition and/or from attending a general practice consultations. However, there was no difference between female OPD and UG participants. This may represent an unmet need of women’s education regarding normal female genital anatomy in general.

Higher education and white ethnicity were positively associated with a greater number of correct anatomical labels. These may reflect other sociodemographic variables, which may lead to exposure to better education at school. This requires further exploration and highlights a particular need for education in particular cross sections of the community.

In our study, 53% understood “prolapse” and 50% had heard of at least one POP term. This is in keeping with other studies in the USA which found that among women attending primary-care gynaecologic clinics (n = 376), 52% knew the term “pelvic organ prolapse”, although those were yes/no questions and the participants actual understanding was not confirmed [24]. As with the study of anatomical knowledge, one of the strengths of our study was using free-text responses to test participants understanding of concepts of each disease.

Only 35% of participants mentioned bulge symptoms in relation to POP, while 24% listed another symptom without mentioning bulge. This is an important finding because clinically the only symptom that can be reliably associated with POP is the presence of a vaginal bulge. We found that the majority of women believed that women who develop a prolapse should seek immediate or urgent medical care. This may be due to the misconceptions that a lump could represent cancer, a misconception which Wieslander et al. found in their study [12].

POP understanding was positively associated with increasing age, white ethnicity and increasing number of correct anatomical labels, making the latter the only modifiable factor for POP understanding and showing that efforts to improve health literacy in gynaecology may benefit from targeting younger women using accessible, culturally appropriate methods across diverse populations.

We had planned initially 200 questionnaires to be distributed as part of purposive sampling with even distribution among age groups across both departments. However, in reality the number of 18–25 years old attendees of the UG department was extremely limited, so only one participant was recruited in this group. We suggest future studies to specifically address this age group’s understanding of the topic.

One of the significant limitations of our study is that it is a single-centre study conducted in one country. It does however expand current knowledge from studies conducted in other countries as explained above. However, such studies were confined to women attending gynaecology practices rather than also assessing general outpatients as we did in this study.

This study classified gynaecological anatomy as ‘female’ and assumed that comparisons in health literacy between male and female participants were based on genders assigned at birth. Further work should explore health literacy among transgender people with gynaecological anatomy, who may face additional challenges to shared decision making across multiple clinical settings.

We found 88 diagrams were left blank, and reasons for not labelling the diagram were not ascertained within the questionnaire. Because these were excluded from the analysis, this study may under-estimate the public’s lack of knowledge in this regard.

Another limitation was participant health literacy scores were not formally assessed using validated tools. However, our questionnaire asked about knowledge of common medical conditions for which most people are expected to have some understanding. In our questionnaire, ethnicity was recorded in the form of a free-text question, and participants were to describe their ethnicity the way they felt represented them; however, this made it difficult to then categorize the data since a mixture of ethnicities and nationalities was reported. Thus, we had to exclude some participants who reported on nationalities rather than ethnicities in the primary analysis.

Another limitation was that participants were not supervised while completing their questionnaires. Participants were advised not to discuss answers with others or look up answers and were reassured that the questionnaire was not a test and their responses were confidential. Nevertheless, it is possible that participants could have discussed answers with others or looked them up using electronic devices. Nevertheless, if this occurred then even with access to smart devices, understanding of both female genital anatomy and POP was poor.

We demonstrated poor public knowledge of external female genital anatomy and understanding of POP in both the UG and OPD settings. Female gender, higher education and white ethnicity were associated with better external female genital anatomy knowledge. POP understanding increased with increasing age, white ethnicity and increased number of correct anatomical labels. Based on these results, the only modifiable factor for such understanding was education/anatomical knowledge.

Future research should focus on effective interventions to breakdown taboos, expand knowledge and thereby empower women to be able to participate in meaningful shared decision making with clinicians.