Misconceptions and Miscommunication among Women with Pelvic Organ Prolapse

Abstract

Introduction and hypothesis

To better understand women’s experience with pelvic organ prolapse (POP) symptoms and to describe factors that prevent disease understanding among Spanish- and English speaking women.

Methods

Women with POP were recruited from female urology and urogynecology clinics in Los Angeles, California and Albuquerque, New Mexico. Eight focus groups were conducted, four in Spanish and four in English. Topics addressed patients’ emotional responses when noticing their prolapse, how they sought support, what verbal and written information was given, and their overall feelings of the process. Additionally, patients were asked about their experience with their treating physician. All interview transcripts were analyzed using Grounded Theory qualitative methods.

Results

Qualitative analysis yielded two preliminary themes: First, women had misconceptions about what POP was as well as its causes and treatments. Secondly, there was a great deal of miscommunication between patient and physician which led to decreased understanding about the diagnosis and treatment options. This included the fact that women were often overwhelmed with information which they did not understand. The concept emerged that there is a strong need for better methods to achieve disease and treatment understanding for women with POP.

Conclusions

Our data emphasize that women with POP have considerable misconceptions about their disease. In addition, there is miscommunication during the patient-physician interaction that leads to further confusion among Spanish and English speaking women. Spending more time explaining the diagnosis of POP, rather than focusing solely on treatment options, may reduce miscommunication and increase patient understanding.

INTRODUCTION

Pelvic floor disorders affect a large proportion of the US population and increase in prevalence with age. In a recent population study the prevalence of at least one symptomatic pelvic floor disorder in women over the age of 20 was 23.7% [1]. The prevalence of symptomatic pelvic organ prolapse (POP) was 2.9%. Wu et al. extrapolated data from the U.S. Census Bureau and the 2005 National Health and Nutrition Examination Survey (NHANES) to estimate the number of women in the U.S. with at least one pelvic floor disorder [2]. They estimated that the number of women with at least one pelvic floor disorder will increase from 28.1 million in 2010 to 43.8 million in 2050. During this time, the incidence of POP will increase by 46%.

The prevalence and bother of pelvic floor disorders varies by ethnicity [3, 4]. According to the 2011 American Community Survey conducted by the U.S. Census Bureau, there are estimated to be over 50.5 million Hispanics or Latinos in the U.S. comprising 16.3% of the population [5]. Further, 13% of the U.S population is foreign-born and of these over half are born in Latin America. The Latina population is growing rapidly in the U.S. and it is estimated that one in four women in the U.S. will be Latina in 2050 [6]. Barriers to medical care have been identified for Latina patients including follow-up of abnormal PAP smears and mammograms [7, 8]. However, it is not known whether such barriers exist for women with POP and whether or not these barriers differ when women are English or Spanish-speaking. A recent population-based cohort study including 2,270 women showed that Latinas (Hispanics) and Caucasians have a 4–5 times higher rate of symptomatic POP compared to African American women [3]. Further, we recently found that bother of pelvic organ prolapse varies with ethnicity. Our study showed that Hispanic and Native American women reporting more bother with stage 2 prolapse compared to non-Hispanic white women [4]. Given the rapid increase in incidence of POP with aging and the growth of the Latina population in the U.S., it is important to communicate effectively with all women with POP. In order to analyze factors affecting disease understanding among both Spanish- and English-speaking women of varying socioeconomic backgrounds, we conducted patient focus groups in two distinct geographic regions in the US.

MATERIALS AND METHODS

Because of limited published information regarding women’s experience with pelvic organ prolapse (POP), qualitative methods were applied for this study. Qualitative research facilitates the exploration of ideas and serves as a foundation for future research. Data analysis using grounded theory differs from other research methods in that it is hypothesis generating, or “emergent” [9]. It aims to understand the research situation, and thereby discover the theory implicit in the data instead of testing a theory [10].

Institutional Review Board approval was obtained from each participating institution. Women with symptomatic pelvic organ prolapse were recruited from a female urology specialty practice at Cedars-Sinai Medical Center (Los Angeles) and from urogynecology clinics at Olive View-UCLA Medical Center (Northern Los Angeles) and the University of New Mexico Medical Center. To ensure that a broad experience of POP was represented, we included women with untreated POP, women using a pessary for prolapse, and women who had recently undergone prolapse surgery. Exclusion criteria were women younger than 18 years of age, women with asymptomatic prolapse, women with dementia, and women who did not speak either English or Spanish. Women with other co-existing pelvic floor disorders, such as stress urinary incontinence and overactive bladder, were included.

Participants were identified by treating physicians and were asked to participate in a 90-minute focus group session. A small honorarium was offered to patients for their time. A trained bilingual moderator used a standardized open-ended script as a guide. Focus groups were audio-taped and transcribed verbatim. Transcriptions in Spanish were translated into English by a bilingual translator. The topics addressed patients’ emotional responses when noticing their prolapse, how they sought support, what verbal and written information was given to them, what treatment options were offered and their overall feelings about the process. Additionally, patients were asked about their experience with their treating physician. Topics for the focus group scripts were created through reviews of the literature and previous experience with patient focus groups [11–14]. Grounded theory methodology, as described by Charmaz, [15] was used to analyze the data. Initial line-by-line coding of transcripts was performed and key phrases were then grouped into preliminary themes. Four investigators separately performed line-by-line coding to minimize subjectivity. Preliminary themes were then combined to develop categories. Emergent concepts became evident after combining the preliminary themes into categories. Preliminary themes were then compared and merged between English and Spanish-speaking groups.

RESULTS

A total of eight focus groups were conducted with up to eight women in each group, totaling 58 subjects. Four groups were conducted in English (two from Cedars-Sinai Medical Center and two from University of New Mexico Medical Center) and four in Spanish (two from Olive View-Medical Center and two from University of New Mexico Medical Center). The focus groups included a wide range of ages and socioeconomic backgrounds. The majority of the English speakers were from the US and the majority of the Spanish speakers from Mexico (Table I). Most women identified their faith beliefs as “Christian” and more than half had an education level of high school or less. Women with a wide range of annual household incomes and employment status were included.

TABLE I.

Focus Group Participant Demographics

PARTICIPANT CHARACTERISTICS	ENGLISH SPEAKING	SPANISH SPEAKING
Total patients, n	25	33
Mean age (range)	63.8 (33–90)	56.6 (46–77)
Country or origin, n (%)
Mexico	0	23 (70)
United States	20 (80)	0
El Salvador	0	5 (15)
Belize	2 (8)	0
Guatemala	0	2 (6)
Canada	1 (4)	0
Chile	0	1 (3)
Dominican Republic	1 (4)	0
Nicaragua	0	1 (3)
Not stated	1 (4)	1 (3)
Religious affiliation, n (%)
Catholic	8 (32)	28 (85)
Christian	8 (32)	4 (12)
Jewish	3 (12)	0
No affiliation	1 (4)	1 (3)
Not stated	5 (20)	0
Highest level of education, n (%)
No schooling or less than high school	0	15 (45)
Some high school	6 (24)	8 (24)
High school diploma	1 (4)	2 (6)
Some college	4 (16)	3 (9)
College degree (Associate/Bachelor)	8 (32)	1 (3)
Graduate or professional	5 (20)	0
Not stated	1 (4)	4 (12)
Total household annual income, n (%)
Less than $10,000	2 (8)	15 (45)
$10,000–29,999	6 (24)	6 (18)
$30,000–49,000	7 (28)	1 (3)
More than $50,000	8 (32)	0
Not stated	2 (8)	11 (33)
Employment status, n (%)
Employed (for wages or self-employed)	11 (44)	9 (27)
Out of work or unable to work	6 (24)	6 (18)
A homemaker	1 (4)	8 (24)
Retired	6 (24)	4 (12)
Not stated	1 (4)	6 (18)

Qualitative analysis yielded several preliminary themes relating to the shame that women with prolapse experienced and their resulting silence, or inability to talk freely about the condition [16]. For this work, we specifically focused on factors that affected patient understanding of their condition and experience communicating with providers. Women had misconceptions about what POP was as well as its causes and treatments. There was also miscommunication between patients and physicians which led to decreased understanding among women about diagnosis and treatment options for their prolapse (Table II).

TABLE II.

Preliminary Themes and Representative Quotes

PATIENT MISCONCEPTIONS	QUOTES FROM PATIENTS
Unaware of what pelvic organ prolapse was	“I did not know that happened to women.” “I did not know anything about it.” “I was scared because I didn’t know what it was.”
Confusing prolapse with bladder or bowel	“when I had the uterus they removed it because the bladder, the bladder was going outside.” “: The doctor says she wants to operate me on the bladder but I don’t want to because it’s the only thing I have.” “ I started with a concern that it was intestinal because I had an intestinal surgery back in the 70’s. And I was having a lot of bowel movement problems. And it ended up protruding, and I couldn’t tell what it was.”
Believing their organs were falling out	“…I could feel that my vagina was opening a lot and something was coming out.” “The bladder and uterus falling and I felt bad.” “My vision was that eventually my guts would be spilling out.”
Afraid the prolapse was cancer or an infection	“…I thought I could get an infection or cancer…and that’s the point at which I went to the doctor.” “…I then told her that my mother had died of cancer of the uterus and that I didn’t want to get cancer therefore I wanted the operation.”
Believe prolapse was caused by heavy lifting, not wearing a girdles, or from sexual intercourse	“I thought it was from lifting the heavy things and from bending over…” “My mom…would tell me not to lift heavy things because…it would get worse” “You need to put a girdle. I wouldn’t do that…and it caught up with me.”

MISCOMMUNICATION ON THE PART OF THE PROVIDER (PATIENT’S PERSPECTIVE)	QUOTES FROM PATIENTS
Did not use the actual name of the diagnosis (only bladder falling) or used complicated language	“That I had the uterus falling and that the uterus was pressuring my bladder.” “…they used complicated words I wouldn’t understand.”
Spent too much time on treatment options and not enough time on explaining the diagnosis	“…she explained for half an hour all the things…but the problem is that I can’t memorize the words she used…” “…well I have already forgotten. It’s cause they tell you so many things that you end up forgetting.”
Lack of use of visual aids	“Yes, models with the anatomy would have helped.” “…because in the beginning you don’t know where the uterus is…” “Any nation that can send a man to the moon can make a model of this so that women can understand. I don’t want to look at a normal body. I want to see a prolapse.”
Lack of written handouts	“That way we could have something to actually take with us.” “Having a brochure… A cheat sheet that you can go back and look at later.

MISCOMMUNICATION OF THE PART OF THE PATIENT	QUOTES FROM PATIENTS
Afraid to ask questions to the provider	“I didn’t know what kind of questions to ask” “I almost felt like I was annoying them with my questions I was asking.”
Afraid to seek outside information from outside sources, such as from friends or family	“You don’t really get any information from other people because they don’t know what you’re talking about.”
Unable or unsure on how to use the internet	“It’s impossible to look at all the websites”
Feeling overwhelmed or confused by the information on the internet	“The amount of information that I was able to get was overwhelming to me”

Patient Misconceptions

Generally, patients had a poor understanding of pelvic organ prolapse, its causes, what specific pelvic anatomy was involved and treatments available. Many women were unaware of what POP was and that it existed as a condition. Once they saw or felt a vaginal bulge, they became frightened and either made an appointment with the doctor immediately or went to the emergency room. This theme was equally common in both English and Spanish-speaking women. Both groups also confused vaginal prolapse with actual herniation of their bowel or bladder. Due to lack of knowledge of anatomy, women often confused uterine or vaginal prolapse with the descent of the bladder or rectum: “the bladder was going outside.” This even led to one woman refusing prolapse surgery, as she did not want her bladder removed. Both English- and Spanish-speaking women also tended to view pelvic organ prolapse and urinary incontinence as one condition exemplified by comments such as “…I didn’t want to be walking around smelling like urine.”

Further, patient’s lack of awareness that POP existed and misconceptions about the symptoms also caused fear in many women. For example, since one of the first symptoms women with POP felt was a protruding “ball” or mass that would bleed, many women feared that they had developed cancer. Due to “smell” or “itching” it was also a common misconception that the POP was either currently an infection or would lead to an infection. This theme existed in both English and Spanish-speaking women, but appeared more commonly among women in the Spanish-speaking focus groups. In addition, women often blamed themselves for causing the prolapse and had misconceptions that it was caused by heavy lifting done early in life, not wearing a girdle, or sexual intercourse. Some women did correctly attribute the risk factor of child birth to the development of POP, but none attributed POP to aging or obesity. It was more common for Spanish-speaking women to attribute POP to heavy lifting than English-speaking women.

Miscommunication: Physician side

Many women stated that the physicians did not use the actual name of the diagnosis, i.e. “pelvic organ prolapse” or “vaginal prolapse,” and rather used descriptions of the condition, such as your “bladder has fallen down,” or “uterus has fallen.” On the other hand, it was also common for patients to say that their physician used complicated language that they did not understand. Many women stated that they preferred simple language. It was also common for women to state that they were given too much information about treatment options, while too little time was spent on explaining the diagnosis. Thus they were confused about what treatment to choose when they did not fully understand what actually needed to be treated. These two themes were much more common among the Spanish-speaking compared to the English-speaking women. It is possible that the lack of knowledge of the exact diagnosis in combination with complicated language and language barriers led to confusion and decreased disease understanding in this group.

Both English- and Spanish-speaking women had poor understanding about their pelvic anatomy. Many wished that their physician had used a visual aid (pelvic model or picture) to explain the anatomy and exact appearance of their prolapse. If a pelvic model or picture was used during the consultation, women expressed that it had been extremely helpful. Women also felt overwhelmed with the amount of new information given to them during the consultation with the physician. All groups felt that a written handout or brochure with pictures would have been very helpful to take home after the visit as a reminder of what was said, although this was more commonly mentioned in the English-speaking focus groups.

Miscommunication: Patient side

It was common for patients to be afraid to ask their providers questions, even though they had poor understanding of their disease. Some women felt so overwhelmed with all the information given by the physician that they did not even know what to ask or where to start. Some women were concerned that they were annoying the physician when they asked questions, and thus did not ask for clarification.

In addition to being afraid to ask the physician questions, patients were also reluctant to confide in family or friends about their disease and ask questions. They either did not believe that family and friends would have an understanding about prolapse, or they were embarrassed to discuss their disease. Often patients confided in a close family member such as their husband or daughter. Being afraid to ask questions to the provider and being afraid to seek outside information from outside sources, such as from friends or family were common themes in both English- and Spanish-speaking focus groups.

Finally, many patients expressed difficulty using the internet to seek information about prolapse. Some women did not have a computer or did not know how to access the internet, while other women with internet access stated that they felt overwhelmed with the number of websites and with the amount of information. English-speaking women were more likely to mention the internet during the focus group interviews than Spanish-speaking women.

Patient misconceptions and miscommunication between physicians and patients both appeared to lead to decreased understanding about the diagnosis and treatment options for POP. There was in general a low level of knowledge about pelvic floor disorders and anatomy among women who participated in the focus groups. In addition, Spanish-speaking women were more likely to believe that the prolapse was cancer or would lead to an infection. Women were reluctant to discuss symptoms with health care professionals and family members and they often felt overwhelmed with information, either because the exact name of the diagnosis was not used or because the provider used too complicated language. Both English-and Spanish-speaking women felt that pelvic models and pictures of anatomy were helpful in explaining the diagnosis and both groups wanted patient handouts to read after the consultation. The concept emerged that there is a strong need for better methods to achieve disease and treatment understanding among women with POP.

DISCUSSION

Through focus groups composed of both Spanish and English-speaking women with symptomatic pelvic organ prolapse, we noted that there were major patient misconceptions leading to confusion and fear. There appeared to be a general lack of public awareness about pelvic organ prolapse as a disease process. This caused women to panic and either urgently visit their physician or the emergency room. The very limited knowledge about pelvic organ prolapse as a condition is consistent with another focus group study including community-dwelling African American and Latina women and their knowledge and opinions about pelvic floor disorders (PDFs). [11] We found that there were low levels of knowledge about PFDs and a reluctance to discuss symptoms with health care professionals and family members. Our data also showed that there was a common misconception among women that the vaginal bulge was cancer, would lead to infection, or would lead to evisceration. Women commonly blamed themselves for causing their condition by lifting heavy objects, not wearing a girdle, or engaging in sexual intercourse. We previously identified similar misconceptions among aging women with overactive bladder (OAB) who participated in focus groups. [12, 13] These women had a general lack of understanding of the etiology of OAB, and believed that OAB was a natural part of aging and something they had to accept. [12] Similar to our current study, the patients in the OAB group confused their disease with other pelvic floor disorders. [12] Women with severe OAB also blamed themselves for their condition and felt that a psychological weakness caused them to lose control over their condition. [13]

It is unclear if the general lack of awareness of pelvic floor conditions we identified was due to low health literacy and a resultant lack of understanding of pelvic anatomy. We previously performed patient interviews before and after physician encounters with Spanish-speaking women with urinary incontinence (UI) and POP who attended a Los Angeles County urogynecology clinic. Health literacy was assessed using validated questionnaires. Patients with low health literacy lacked understanding of their diagnosis before and after the physician encounter and felt overwhelmed with the information given to them. [14] On the other hand, a similar study performed with insured, English-speaking women with UI and POP revealed that despite high health literacy levels, there was a persistent lack of understanding of anatomy and cause of their symptoms. [17] Causes of poor understanding of POP are multi-factorial and likely include low health literacy, language barriers, shame, and a taboo regarding speaking about the vagina among older generations and certain ethnic groups. It may be more acceptable to use “bladder prolapse” or “bladder problems” instead of saying “vaginal prolapse.” Clearly more public education is needed in this area.

Data from our focus groups also revealed miscommunication from the physician side leading to decreased disease understanding. It was common for the physician to not use the actual diagnostic term of “prolapse”, but rather to use descriptive terms, such as “your uterus has fallen.” On the other hand, patients commonly said that the physician used complicated language that they did not understand. To improve disease understanding, we believe that the physician should tell the patient what their diagnosis is, such as uterine or vaginal prolapse, but should also explain what it means in simple terms. It may be helpful for the physician to ask the patient to explain in their own words (“teach back’) what their understanding is after the discussion to assess understanding and giving the patient a chance to ask questions. Asking the patient to bring a family member to the appointment may also be helpful, since the family member can take notes and ask questions without feeling overwhelmed. Due to poor understanding of their pelvic anatomy, women with POP may find it extremely helpful if physicians use a pelvic model or picture to describe what normal anatomy is and which organs are involved. Since women were overwhelmed with the amount of new information given to them during the physician encounter, a written handout or brochure in the patient’s language explaining what POP is would likely increase disease understanding. Finally, patients felt that the physician spent too much time on treatment options and not enough time explaining the diagnosis. A similar finding was noted in patient interviews before and after physician consultations for patients with UI and POP with marginal health literacy. [14] It is likely that lack of public awareness of female pelvic anatomy and POP leads to more time required to educate patients about prolapse so that they can then make informed treatment decisions. In addition, pelvic floor disorders are complicated and may be difficult to understand for general health care providers. This may also contribute to the patient-physician miscommunication prior to the patient reaches the subspecialist.

We found that Spanish-speaking women have additional barriers to communication. They were more likely to have misconceptions about what pelvic organ prolapse was, such as cancer or that it would lead to an infection. Spanish-speaking women were also more likely to hold misconceptions about causes of prolapse, such as that it was caused by heavy lifting done early in life, not wearing a girdle, or sexual intercourse. It is possible that these misconceptions were exacerbated by low health literacy. Although we did not measure health literacy in the participants of this study, we have previously measured health literacy in Spanish-speaking women at the urogynecology clinic at Olive View-UCLA Medical Center and in English-speaking women at the female urology specialty clinic at Cedars-Sinai Medical. [17, 14] We found that Spanish-speaking women at the urogynecology clinic at Olive View-UCLA Medical Center had marginal or low health literacy while English-speaking women at the female urology specialty clinic at Cedars-Sinai Medical had high health literacy. Finally, Spanish-speaking women have to rely on translators unless the provider speaks Spanish. This can provide an additional barrier to disease-understanding. We previously conducted interviews with translators and Spanish-speaking women, and found that both physicians and translators had poor knowledge of pelvic floor vocabulary and often used “Spanglish” a contrived mixture of both Spanish and English to communicate. [18]

Finally, data from our focus groups showed several areas of patient miscommunication. It was common for the patients to be afraid to ask questions of the physician, even though they had poor understanding of their disease. It appeared that women were afraid to bother physicians with questions. It is also possible that women felt overwhelmed and did not know what to ask, or that they did not want to reveal their lack of understanding due to embarrassment. Since many women felt overwhelmed with the internet, the physician may ask the patient if she or other family members have access to the internet. The physician can then recommend internet sites with clear and accurate information about POP.

The strength of this study is that qualitative methods were used to interpret patients’ views and to provide means for analyzing data not readily extracted from patient charts. We also included a wide variety of women with symptomatic POP in our study from two distinct geographic regions with varied ages, educational levels, and income levels. We made a special effort to include a large number of Spanish-speaking women so that the data would also represent views from a large group of Latinas living in the U.S, and we did reach saturation in our focus groups. However, there are some inherent weaknesses in this study. Patients who agree to participate in a focus group may not be representative of the entire population of women with POP. For example, some women stated that they came to the focus groups in order to meet other women with similar problems. In addition, recall bias may have affected how the women described their experience with POP during the focus groups. Finally, discrepancies and biases in data analysis may arise with qualitative methods, though the data was analyzed separately by four investigators to minimize this limitation.

In summary, our data emphasize that women with pelvic organ prolapse have considerable misconceptions about their disease. In addition, there is miscommunication during the patient-physician interaction that leads to further confusion. It is important for the physician to spend more time explaining the diagnosis of pelvic organ prolapse rather than focus solely on treatment options. In addition, using visual aids and providing handouts may increase patient understanding.