Int Urogynecol J DOI 10.1007/s00192-014-2562-z
ORIGINAL ARTICLE
Misconceptions and miscommunication among Spanish-speaking and English-speaking women with pelvic organ prolapse Cecilia K. Wieslander & Alexandriah Alas & Gena C. Dunivan & Claudia Sevilla & Sara Cichowski & Sally Maliski & Karyn Eilber & Rebecca G. Rogers & Jennifer T. Anger
Received: 12 August 2014 / Accepted: 23 October 2014 # The International Urogynecological Association 2014
Abstract Introduction and hypothesis Limited data exist on women’s experience with pelvic organ prolapse (POP) symptoms. We aimed to describe factors that prevent disease understanding among Spanish-speaking 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 is as well as its causes and treatments. Second, 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 findings 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-speaking 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.
C. K. Wieslander (*) Obstetrics and Gynecology, Olive View-UCLA Medical Center, 14445 Olive View Drive, Rm 6D112, Sylmar, CA 91342, USA e-mail: [email protected]
C. Sevilla Surgery, Division of Urology, University of California Los Angeles, Los Angeles, CA, USA
Keywords Disease understanding . Focus groups . Grounded theory . Pelvic organ prolapse . Qualitative research
e-mail: [email protected] A. Alas Obstetrics and Gynecology, Cedars-Sinai Medical Center, Los Angeles, CA, USA e-mail: [email protected] G. C. Dunivan : S. Cichowski : R. G. Rogers Obstetrics and Gynecology, University of New Mexico Health Center, Albuquerque, NM, USA G. C. Dunivan e-mail: [email protected]
S. Maliski UCLA School of Nursing, University of California Los Angeles, Los Angeles, CA, USA e-mail: [email protected] K. Eilber : J. T. Anger Surgery, Division of Urology, Cedars-Sinai Medical Center, Los Angeles, CA, USA
S. Cichowski e-mail: [email protected]
K. Eilber e-mail: [email protected]
R. G. Rogers e-mail: [email protected]
J. T. Anger e-mail: [email protected]
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Introduction Pelvic floor disorders (PFDs) 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 PFD in women over the age of 20 years was 23.7 % [1]. The prevalence of symptomatic pelvic organ prolapse (POP) was 2.9 %. Wu et al. extrapolated data from the US Census Bureau and the 2005 National Health and Nutrition Examination Survey (NHANES) to estimate the number of women in the US with at least one PFD [2]. They estimated that the number of women with at least one PFD 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 PFDs varies by ethnicity [3, 4]. According to the 2011 American Community Survey conducted by the US Census Bureau, there are estimated to be over 50.5 million Hispanics or Latinos in the US comprising 16.3 % of the population [5]. Further, 13 % of the US population is foreign-born and of these over half were born in Latin America. The Latina population is growing rapidly in the US and it is estimated that one in four women in the US 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 between English-speaking and Spanish-speaking women. A recent population-based cohort study including 2,270 women showed that Latinas (Hispanics) and Caucasians have a four to five times higher rate of symptomatic POP compared with African American women [3]. Further, we recently found that the bother of POP varies with ethnicity. Our study showed that Hispanic and Native American women reported more bother with stage 2 prolapse than non-Hispanic white women [4]. Given the rapid increase in the incidence of POP with aging and the growth of the Latina population in the US, it is important to communicate effectively with all women with POP. In order to analyze factors affecting disease understanding among both Spanish-speaking 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 POP, qualitative methods were applied in 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” (http://www. icology.co.uk/groundedtheory.html). It aims to explain the
research situation, and thereby reveal the theory implicit in the data instead of testing a theory [9]. Institutional Review Board approval was obtained from each participating institution. Women with symptomatic POP 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. Since we were interested in each patient’s understanding of her condition and her experience of prolapse symptoms, we did not collect data on what specific treatments the patient had undergone. Exclusion criteria were women younger than 18 years, women with asymptomatic prolapse, women with dementia, and women who did not speak either English or Spanish. Women with other coexisting PFDs, such as stress urinary incontinence (UI) and overactive bladder (OAB), were included. Participants were identified by treating physicians and were asked to participate in a 90-min 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 audiotaped and the discussions were 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 [10–13]. Grounded theory methodology, as described by Charmaz [14], 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-speaking 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
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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 1). 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. There were some important differences between the English-speaking and Spanish-speaking groups, including higher levels of education and income among the English-speaking women. Qualitative analysis yielded several preliminary themes relating to the shame that women with POP experienced and their resulting silence, or inability to talk freely about the condition [15]. For this work, we specifically focused on
Table 1 Demographics of the focus group participants Participant characteristics
English-speaking
Spanish-speaking
Total patients, n Age (years), mean (range) Country of origin, n (%) Mexico United States El Salvador Belize Guatemala Canada Chile Dominican Republic Nicaragua Not stated
25 63.8 (33 – 90)
33 56.6 (46 – 77)
Religious affiliation, n (%) Catholic Christian Jewish No affiliation Not stated Highest level of education, n (%) No schooling or less than high school Some high school High school diploma Some college College degree (Associate/Bachelor) Graduate or professional Not stated Total household annual income, n (%) Less than $10,000 $10,000 – 29,999 $30,000 – 49,000 More than $50,000 Not stated Employment status, n (%) Employed (for wages or self-employed) Out of work or unable to work Homemaker Retired Not stated
0 20 (80) 0 2 (8) 0 1 (4) 0 1 (4) 0 1 (4)
23 (70) 0 5 (15) 0 2 (6) 0 1 (3) 0 1 (3) 1 (3)
8 (32) 8 (32) 3 (12) 1 (4) 5 (20)
28 (85) 4 (12) 0 1 (3) 0
0 6 (24) 1 (4) 4 (16) 8 (32) 5 (20) 1 (4)
15 (45) 8 (24) 2 (6) 3 (9) 1 (3) 0 4 (12)
2 (8) 6 (24) 7 (28)
15 (45) 6 (18) 1 (3)
8 (32) 2 (8)
0 11 (33)
11 (44) 6 (24) 1 (4) 6 (24) 1 (4)
9 (27) 6 (18) 8 (24) 4 (12) 6 (18)
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factors that affected patient understanding of their condition and experience communicating with providers. Women had misconceptions about what POP is 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. Patient misconceptions Generally, patients had a poor understanding of POP, its causes, what specific pelvic anatomy was involved and treatments available. Many women were unaware of what POP is and that it exists 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 Englishspeaking 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-speaking and Spanish-speaking women also tended to view POP and UI as one condition exemplified by comments such as “…I didn’t want to be walking around smelling like urine.” Further, patients’ 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-speaking 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. Preliminary themes on patient misconceptions and representative quotes are presented in Table 2.
Table 2 Patient misconceptions Misconception
Quotes from patients
Unaware of what pelvic organ prolapse is
“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.” “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 70s. And I was having a lot of bowel movement problems. And it ended up protruding, and I couldn’t tell what it was.” “…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.” “…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.” “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.”
Confusing prolapse with bladder or bowel
Believing their organs were falling out
Afraid the prolapse was cancer or an infection
Believe prolapse was caused by heavy lifting, not wearing a girdle, or from sexual intercourse
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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,” but 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 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 than among 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-speaking and Spanish-speaking women had a 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 the exact appearance of their prolapse. If a pelvic model or picture was used during the consultation, women stated 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 had been said, although this was more commonly mentioned in the English-speaking focus groups. Preliminary themes on miscommunication on the part
of the physician and representative quotes are presented in Table 3. Miscommunication: patient side It was common for patients to be afraid to ask their providers questions, even though they had a 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 of the provider and being afraid to seek outside information from outside sources, such as friends or family were common themes in both English-speaking and Spanishspeaking 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. Preliminary themes on miscommunication on the part of the patient and representative quotes are presented in Table 4.
Table 3 Miscommunication on the part of the physician (patients’ perspective) Miscommunication
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.” “…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.” “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.” “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.”
Spent too much time on treatment options and not enough time on explaining the diagnosis
Lack of use of visual aids
Lack of written handouts
Int Urogynecol J Table 4 Miscommunication on the part of the patient Miscommunication
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.” “You don’t really get any information from other people because they don’t know what you’re talking about.” “It’s impossible to look at all the websites.” “The amount of information that I was able to get was overwhelming to me.”
Afraid to seek outside information from outside sources, such as from friends or family Unable or unsure on how to use the internet Feeling overwhelmed or confused by the information on the internet
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 PFDs 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 healthcare 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 Englishspeaking 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-speaking and English-speaking women with symptomatic POP, we noted that there were major patient misconceptions leading to confusion and fear. There appeared to be a general lack of public awareness about POP as a disease process. This caused women to panic and either urgently visit their physician or the emergency room. The very limited knowledge about POP as a condition is consistent with another focus group study including community-dwelling African American and Latina women and their knowledge and opinions about PFDs [10]. We found that there were low levels of knowledge about PFDs and a reluctance to discuss symptoms with healthcare professionals and family members. Our findings 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 have previously identified similar misconceptions among aging women with OAB who participated in focus groups [11, 12]. 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 [11]. Similar to our current study, the patients in the OAB group confused their disease with other PFDs [11]. Women with severe OAB also blamed themselves for their condition and felt that a psychological weakness caused them to lose control over their condition [12]. It is likely that some of the patient misconceptions of POP are induced by caregiver miscommunication. For example, it is not uncommon for patients to say that they had been told by a physician that they have “bladder prolapse,” that they need to have “a bladder lift” or that their “rectum is falling out.” Patients may also be told postoperatively “not to do heavy lifting in the future” in order to prevent prolapse recurrence. We feel it is important that physicians and caregivers be specific about what organs are actually prolapsing, i.e. vaginal prolapse, in order to minimize patient misconceptions and patient–provider miscommunications. 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 have previously performed patient interviews before and after physician encounters in Spanish-speaking women with 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 [13]. 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 [16]. Causes of poor understanding of POP are multifactorial 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
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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 to give 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 [13]. 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, PFDs are complicated and may be difficult to understand for general healthcare providers. This may also contribute to the patient–physician miscommunication prior to the patient reaching the subspecialist. We found that Spanish-speaking women have additional barriers to communication. They were more likely to have misconceptions about what POP is, such as cancer or that it would lead to an infection. Spanish-speaking women were also more likely to hold misconceptions about the 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 study participants, 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 [16, 13]. We found that the Spanish-speaking women
had marginal or low health literacy while the Englishspeaking women had high health literacy. Finally, Spanishspeaking women have to rely on translators unless the healthcare provider speaks Spanish. This can provide an additional barrier to disease understanding. We have previously conducted interviews with translators and Spanish-speaking women, and found that both physicians and translators had a poor knowledge of pelvic floor vocabulary and often used “Spanglish” a contrived mixture of both Spanish and English to communicate [17]. 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 a 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 analyze data not readily extracted from patient charts. We also included a wide variety of women with symptomatic POP 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 US, and we did reach saturation in our focus groups. However, there are some inherent weaknesses in this study. First, the demographics of the Spanish-speaking and English-speaking groups had several differences, such as the levels of education and income. We believe that geographic location of where the focus groups were conducted contributed to the variation in patient demographics. Patients recruited from Cedars Sinai Medical Center were recruited from a private female urology practice and were English speaking, and had higher levels of education and income. Patients from Olive View-UCLA Medical Center were Spanish speaking, and had lower levels of education and income. Similar differences were noted between Spanish-speaking and English-speaking patients from the four focus groups at University of New Mexico. We believe that the diversity of the patients included in the study strengthens this qualitative research. In addition, patient numbers were too small to analyze differences quantitatively. The time frame in which we conducted all the focus groups at the different sites were the same, so it is unlikely that the timing of the focus groups had any effect on the analysis. Patients who agree to participate in a focus group may not be representative of the entire population of women
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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 were analyzed separately by four investigators to minimize this limitation. In summary, 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. It is important for the physician to spend more time explaining the diagnosis of POP rather than focus solely on treatment options. In addition, using visual aids and providing handouts may increase patient understanding.
Funding sources Funded by a National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Patient-Oriented Research Career Development Act Award (1 K23DK080227, J.T.A.) and an American Recovery and Reinvestment Act (ARRAO) Supplement (5K23DK080227, J.T.A.), Supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences through grant number UL 1-RR031977 Conflicts of interest C.K. Wieslander: none. A. Alas: investigator for Pfizer. C.G. Dunivan: member of AUGS educational committee. C. Sevilla: none. S. Cichowski: none. S. Maliski: none. K. Eilber: Speaker’s Bureau for Astellas, investigator for Boston Scientific and American Medical Systems, consultant for American Medical Systems. R.G. Rogers: Editor for the International Urogynecology Journal, Special Editor for Obstetrics & Gynecology, receiving royalties from Up to Date and textbook, member of ACOG Executive Board, DSMB chair for the TRANSFORM trial, receiving NIH funding. J.T. Anger: none.
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3. Whitcomb EL, Rortveit G, Brown JS, Creasman JM et al (2009) Racial differences in pelvic organ prolapse. Obstet Gynecol 114(6): 1271–1277 4. Dunivan GC, Cichowski SB, Komesu YM, Fairchild PS, Anger JT, Rogers RG (2014) Ethnicity and variations of pelvic organ prolapse bother. Int Urogynecol J 25:5–59 5. U.S. Census Bureau (2010) Profile of general population and housing characteristics: 2010.2010 demographic profile data. http://factfinder2.census.gov/faces/tableservices/jsf/pages/ productview.xhtml?pid=DEC_10_DP_DPDP1. Accessed 2 November 2014 6. Day JC (1996) Population projections of the United States by age, sex, race and Hispanic origin: 1995–2050. U.S. Bureau of the Census, Current Population Reports, P25-1130. U.S. Government Printing Office, Washington, DC 7. Percac-Lima S, Aldrich LS, Gamba GB, Bearse AM, Atlas SJ (2010) Barriers to follow-up of an abnormal Pap smear in Latina women referred for colposcopy. J Gen Intern Med 25(11):1198– 1204 8. Press RCO, Sciacca RR, Giardina EG (2008) Racial/ethnic disparities in time to follow-up after an abnormal mammogram. J Womens Health (Larchmt) 17(6):923–930 9. Glaser BG (1992) Basics of grounded theory analysis: emergence vs forcing. Sociology Press, Mill Valley 10. Hatchett L, Hebert-Beirne J, Tenfelde S, Lavender MD, Brubaker L (2011) Knowledge and perceptions of pelvic floor disorders among African American and Latina women. Female Pelvic Med Reconstr Surg 17(4):190–194 11. Anger JT, Nissim HA, Le TX et al (2011) Women’s experience with severe overactive bladder symptoms and treatment: insight revealed from patient focus groups. Neurourol Urodyn 30:1295–1299 12. Smith AL, Nissim HA, Le TX, et al (2011) Misconceptions and miscommunications among aging women with overactive bladder symptoms. Urology 77:55–59 13. Sevilla C, Wieslander CK, Alas AN, Dunivan GC, Khan AA, Maliski SL, Rogers RG, Anger JT (2013) Communication between physicians and Spanish-speaking Latin American women with pelvic floor disorders: a cycle of misunderstanding? Female Pelvic Med Reconstr Surg 19(2):90–97. doi:10.1097/SPV. 0b013e318278cc15 14. Charmaz K (2002) Qualitative interviewing and grounded theory analysis. In: Gubrium JF, Holstein J (eds) Handbook of interview research: context and method. Sage, Thousand Oaks, CA, pp 675– 694 15. Dunivan GC, Anger JT, Alas AN et al (2014) Pelvic organ prolapse: a disease of silence and shame. Female Pelvic Med Reconstr Surg 20(6):322–327 16. Kiyosaki K, Ackerman AL, Histed S et al (2012) Patients’ understanding of pelvic floor disorders: what women want to know. Female Pelvic Med Reconstr Surg 18:127–142 17. Khan AA, Sevilla C, Wieslander CK, Moran MB, Rashid R, Mittal B, Maliski SL, Rogers RG, Anger JT (2013) Communication barriers among Spanish-speaking women with pelvic floor disorders: lost in translation? Female Pelvic Med Reconstr Surg 19(3):157–164. doi: 10.1097/SPV.0b013e318288ac1c
ORIGINAL ARTICLE
Misconceptions and miscommunication among Spanish-speaking and English-speaking women with pelvic organ prolapse Cecilia K. Wieslander & Alexandriah Alas & Gena C. Dunivan & Claudia Sevilla & Sara Cichowski & Sally Maliski & Karyn Eilber & Rebecca G. Rogers & Jennifer T. Anger
Received: 12 August 2014 / Accepted: 23 October 2014 # The International Urogynecological Association 2014
Abstract Introduction and hypothesis Limited data exist on women’s experience with pelvic organ prolapse (POP) symptoms. We aimed to describe factors that prevent disease understanding among Spanish-speaking 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 is as well as its causes and treatments. Second, 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 findings 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-speaking 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.
C. K. Wieslander (*) Obstetrics and Gynecology, Olive View-UCLA Medical Center, 14445 Olive View Drive, Rm 6D112, Sylmar, CA 91342, USA e-mail: [email protected]
C. Sevilla Surgery, Division of Urology, University of California Los Angeles, Los Angeles, CA, USA
Keywords Disease understanding . Focus groups . Grounded theory . Pelvic organ prolapse . Qualitative research
e-mail: [email protected] A. Alas Obstetrics and Gynecology, Cedars-Sinai Medical Center, Los Angeles, CA, USA e-mail: [email protected] G. C. Dunivan : S. Cichowski : R. G. Rogers Obstetrics and Gynecology, University of New Mexico Health Center, Albuquerque, NM, USA G. C. Dunivan e-mail: [email protected]
S. Maliski UCLA School of Nursing, University of California Los Angeles, Los Angeles, CA, USA e-mail: [email protected] K. Eilber : J. T. Anger Surgery, Division of Urology, Cedars-Sinai Medical Center, Los Angeles, CA, USA
S. Cichowski e-mail: [email protected]
K. Eilber e-mail: [email protected]
R. G. Rogers e-mail: [email protected]
J. T. Anger e-mail: [email protected]
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Introduction Pelvic floor disorders (PFDs) 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 PFD in women over the age of 20 years was 23.7 % [1]. The prevalence of symptomatic pelvic organ prolapse (POP) was 2.9 %. Wu et al. extrapolated data from the US Census Bureau and the 2005 National Health and Nutrition Examination Survey (NHANES) to estimate the number of women in the US with at least one PFD [2]. They estimated that the number of women with at least one PFD 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 PFDs varies by ethnicity [3, 4]. According to the 2011 American Community Survey conducted by the US Census Bureau, there are estimated to be over 50.5 million Hispanics or Latinos in the US comprising 16.3 % of the population [5]. Further, 13 % of the US population is foreign-born and of these over half were born in Latin America. The Latina population is growing rapidly in the US and it is estimated that one in four women in the US 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 between English-speaking and Spanish-speaking women. A recent population-based cohort study including 2,270 women showed that Latinas (Hispanics) and Caucasians have a four to five times higher rate of symptomatic POP compared with African American women [3]. Further, we recently found that the bother of POP varies with ethnicity. Our study showed that Hispanic and Native American women reported more bother with stage 2 prolapse than non-Hispanic white women [4]. Given the rapid increase in the incidence of POP with aging and the growth of the Latina population in the US, it is important to communicate effectively with all women with POP. In order to analyze factors affecting disease understanding among both Spanish-speaking 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 POP, qualitative methods were applied in 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” (http://www. icology.co.uk/groundedtheory.html). It aims to explain the
research situation, and thereby reveal the theory implicit in the data instead of testing a theory [9]. Institutional Review Board approval was obtained from each participating institution. Women with symptomatic POP 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. Since we were interested in each patient’s understanding of her condition and her experience of prolapse symptoms, we did not collect data on what specific treatments the patient had undergone. Exclusion criteria were women younger than 18 years, women with asymptomatic prolapse, women with dementia, and women who did not speak either English or Spanish. Women with other coexisting PFDs, such as stress urinary incontinence (UI) and overactive bladder (OAB), were included. Participants were identified by treating physicians and were asked to participate in a 90-min 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 audiotaped and the discussions were 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 [10–13]. Grounded theory methodology, as described by Charmaz [14], 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-speaking 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
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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 1). 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. There were some important differences between the English-speaking and Spanish-speaking groups, including higher levels of education and income among the English-speaking women. Qualitative analysis yielded several preliminary themes relating to the shame that women with POP experienced and their resulting silence, or inability to talk freely about the condition [15]. For this work, we specifically focused on
Table 1 Demographics of the focus group participants Participant characteristics
English-speaking
Spanish-speaking
Total patients, n Age (years), mean (range) Country of origin, n (%) Mexico United States El Salvador Belize Guatemala Canada Chile Dominican Republic Nicaragua Not stated
25 63.8 (33 – 90)
33 56.6 (46 – 77)
Religious affiliation, n (%) Catholic Christian Jewish No affiliation Not stated Highest level of education, n (%) No schooling or less than high school Some high school High school diploma Some college College degree (Associate/Bachelor) Graduate or professional Not stated Total household annual income, n (%) Less than $10,000 $10,000 – 29,999 $30,000 – 49,000 More than $50,000 Not stated Employment status, n (%) Employed (for wages or self-employed) Out of work or unable to work Homemaker Retired Not stated
0 20 (80) 0 2 (8) 0 1 (4) 0 1 (4) 0 1 (4)
23 (70) 0 5 (15) 0 2 (6) 0 1 (3) 0 1 (3) 1 (3)
8 (32) 8 (32) 3 (12) 1 (4) 5 (20)
28 (85) 4 (12) 0 1 (3) 0
0 6 (24) 1 (4) 4 (16) 8 (32) 5 (20) 1 (4)
15 (45) 8 (24) 2 (6) 3 (9) 1 (3) 0 4 (12)
2 (8) 6 (24) 7 (28)
15 (45) 6 (18) 1 (3)
8 (32) 2 (8)
0 11 (33)
11 (44) 6 (24) 1 (4) 6 (24) 1 (4)
9 (27) 6 (18) 8 (24) 4 (12) 6 (18)
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factors that affected patient understanding of their condition and experience communicating with providers. Women had misconceptions about what POP is 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. Patient misconceptions Generally, patients had a poor understanding of POP, its causes, what specific pelvic anatomy was involved and treatments available. Many women were unaware of what POP is and that it exists 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 Englishspeaking 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-speaking and Spanish-speaking women also tended to view POP and UI as one condition exemplified by comments such as “…I didn’t want to be walking around smelling like urine.” Further, patients’ 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-speaking 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. Preliminary themes on patient misconceptions and representative quotes are presented in Table 2.
Table 2 Patient misconceptions Misconception
Quotes from patients
Unaware of what pelvic organ prolapse is
“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.” “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 70s. And I was having a lot of bowel movement problems. And it ended up protruding, and I couldn’t tell what it was.” “…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.” “…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.” “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.”
Confusing prolapse with bladder or bowel
Believing their organs were falling out
Afraid the prolapse was cancer or an infection
Believe prolapse was caused by heavy lifting, not wearing a girdle, or from sexual intercourse
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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,” but 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 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 than among 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-speaking and Spanish-speaking women had a 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 the exact appearance of their prolapse. If a pelvic model or picture was used during the consultation, women stated 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 had been said, although this was more commonly mentioned in the English-speaking focus groups. Preliminary themes on miscommunication on the part
of the physician and representative quotes are presented in Table 3. Miscommunication: patient side It was common for patients to be afraid to ask their providers questions, even though they had a 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 of the provider and being afraid to seek outside information from outside sources, such as friends or family were common themes in both English-speaking and Spanishspeaking 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. Preliminary themes on miscommunication on the part of the patient and representative quotes are presented in Table 4.
Table 3 Miscommunication on the part of the physician (patients’ perspective) Miscommunication
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.” “…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.” “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.” “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.”
Spent too much time on treatment options and not enough time on explaining the diagnosis
Lack of use of visual aids
Lack of written handouts
Int Urogynecol J Table 4 Miscommunication on the part of the patient Miscommunication
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.” “You don’t really get any information from other people because they don’t know what you’re talking about.” “It’s impossible to look at all the websites.” “The amount of information that I was able to get was overwhelming to me.”
Afraid to seek outside information from outside sources, such as from friends or family Unable or unsure on how to use the internet Feeling overwhelmed or confused by the information on the internet
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 PFDs 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 healthcare 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 Englishspeaking 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-speaking and English-speaking women with symptomatic POP, we noted that there were major patient misconceptions leading to confusion and fear. There appeared to be a general lack of public awareness about POP as a disease process. This caused women to panic and either urgently visit their physician or the emergency room. The very limited knowledge about POP as a condition is consistent with another focus group study including community-dwelling African American and Latina women and their knowledge and opinions about PFDs [10]. We found that there were low levels of knowledge about PFDs and a reluctance to discuss symptoms with healthcare professionals and family members. Our findings 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 have previously identified similar misconceptions among aging women with OAB who participated in focus groups [11, 12]. 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 [11]. Similar to our current study, the patients in the OAB group confused their disease with other PFDs [11]. Women with severe OAB also blamed themselves for their condition and felt that a psychological weakness caused them to lose control over their condition [12]. It is likely that some of the patient misconceptions of POP are induced by caregiver miscommunication. For example, it is not uncommon for patients to say that they had been told by a physician that they have “bladder prolapse,” that they need to have “a bladder lift” or that their “rectum is falling out.” Patients may also be told postoperatively “not to do heavy lifting in the future” in order to prevent prolapse recurrence. We feel it is important that physicians and caregivers be specific about what organs are actually prolapsing, i.e. vaginal prolapse, in order to minimize patient misconceptions and patient–provider miscommunications. 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 have previously performed patient interviews before and after physician encounters in Spanish-speaking women with 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 [13]. 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 [16]. Causes of poor understanding of POP are multifactorial 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
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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 to give 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 [13]. 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, PFDs are complicated and may be difficult to understand for general healthcare providers. This may also contribute to the patient–physician miscommunication prior to the patient reaching the subspecialist. We found that Spanish-speaking women have additional barriers to communication. They were more likely to have misconceptions about what POP is, such as cancer or that it would lead to an infection. Spanish-speaking women were also more likely to hold misconceptions about the 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 study participants, 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 [16, 13]. We found that the Spanish-speaking women
had marginal or low health literacy while the Englishspeaking women had high health literacy. Finally, Spanishspeaking women have to rely on translators unless the healthcare provider speaks Spanish. This can provide an additional barrier to disease understanding. We have previously conducted interviews with translators and Spanish-speaking women, and found that both physicians and translators had a poor knowledge of pelvic floor vocabulary and often used “Spanglish” a contrived mixture of both Spanish and English to communicate [17]. 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 a 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 analyze data not readily extracted from patient charts. We also included a wide variety of women with symptomatic POP 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 US, and we did reach saturation in our focus groups. However, there are some inherent weaknesses in this study. First, the demographics of the Spanish-speaking and English-speaking groups had several differences, such as the levels of education and income. We believe that geographic location of where the focus groups were conducted contributed to the variation in patient demographics. Patients recruited from Cedars Sinai Medical Center were recruited from a private female urology practice and were English speaking, and had higher levels of education and income. Patients from Olive View-UCLA Medical Center were Spanish speaking, and had lower levels of education and income. Similar differences were noted between Spanish-speaking and English-speaking patients from the four focus groups at University of New Mexico. We believe that the diversity of the patients included in the study strengthens this qualitative research. In addition, patient numbers were too small to analyze differences quantitatively. The time frame in which we conducted all the focus groups at the different sites were the same, so it is unlikely that the timing of the focus groups had any effect on the analysis. Patients who agree to participate in a focus group may not be representative of the entire population of women
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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 were analyzed separately by four investigators to minimize this limitation. In summary, 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. It is important for the physician to spend more time explaining the diagnosis of POP rather than focus solely on treatment options. In addition, using visual aids and providing handouts may increase patient understanding.
Funding sources Funded by a National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Patient-Oriented Research Career Development Act Award (1 K23DK080227, J.T.A.) and an American Recovery and Reinvestment Act (ARRAO) Supplement (5K23DK080227, J.T.A.), Supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences through grant number UL 1-RR031977 Conflicts of interest C.K. Wieslander: none. A. Alas: investigator for Pfizer. C.G. Dunivan: member of AUGS educational committee. C. Sevilla: none. S. Cichowski: none. S. Maliski: none. K. Eilber: Speaker’s Bureau for Astellas, investigator for Boston Scientific and American Medical Systems, consultant for American Medical Systems. R.G. Rogers: Editor for the International Urogynecology Journal, Special Editor for Obstetrics & Gynecology, receiving royalties from Up to Date and textbook, member of ACOG Executive Board, DSMB chair for the TRANSFORM trial, receiving NIH funding. J.T. Anger: none.
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