What patients call gynecological conditions: A qualitative study

What patients call gynecological conditions: A qualitative study | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL BJOG: An International Journal of Obstetrics and Gynaecology This is a preprint and has not been peer reviewed. Data may be preliminary. 15 May 2025 V1 Latest version Share on What patients call gynecological conditions: A qualitative study Authors : Iyer S 0000-0003-3691-7593 [email protected] , Badillo-Goicoechea E , Glass D , and Huepfel B Authors Info & Affiliations https://doi.org/10.22541/au.174729626.68837907/v1 211 views 183 downloads Contents Abstract Supplementary Material Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract Importance: This study identifies specific language used for common problems seen in gynecology. Objective: To better identify language used by patients for gynecological conditions and understand how these terms may differ between communities. Study Design: observational qualitative study. Setting: An urban academic hospital. Population : Adult female patients (aged 18 and older) seen in the gynecology clinic were included, and those younger than 18 and non-English speakers were excluded. Methods: Interviews using a structured interview guide were conducted. New patients were enrolled in the study until the point of theoretical saturation. Key terms were identified and trends involving symptoms were investigated using natural language processing (NLP) techniques including lemmatization, text similarity, and sentiment. Outcome measures: Terminology gathered from study interviews was described. Results: 30 patients completed the study. Study participants included 12 (40%) Black patients, 9 (30%) White, 4 (13.3%) Hispanic and 3 (10.3%) Asian. Participants were equally distributed in age and most participants had attended some college 26 (86.6%). Almost half of the women had not been pregnant, 14 (46.7%). While many patients used some medical specific terminology, many also used symptoms specific common terms that were more descriptive of their experience. Patients identified “cysts” more commonly than “fibroids” and were concerned about cancer. Overwhelmingly patients identified communication problems between providers and patients resulting in misunderstandings and a lack of trust. Conclusion: By starting with identifying specific language used and expanding to identifying overall themes, we can improve understanding between patients and providers. What patients call gynecological conditions: A qualitative study Iyer S 1 , Badillo-Goicoechea E 2 , Glass, D 3 , Huepfel B 4 1. Shilpa Iyer, MD MPH: University of Illinois at Chicago, Department of Obstetrics and Gynecology, Urogynecology and Reconstructive Pelvic Surgery, Chicago, IL. 2. Elena Badillo-Goicoechea, MS: University of Chicago, Department of Public Health Sciences, Chicago, IL. 3. Dianne Glass, MD PhD: Kaiser Permanente, Department of Obstetrics and Gynecology, Mclean, VA. 4. Bridget Huepfel, BA: University of Chicago, Department of Obstetrics and Gynecology, Chicago, IL. Corresponding Author: Shilpa Iyer, MD MPH University of Illinois at Chicago Department of Obstetrics and Gynecology, Urogynecology and Reconstructive Pelvic Surgery 1201 West Taylor Street [email protected] , 773-597-8945 phone Word count: 249 abstract, 2489 manuscript Short title: Patients Gynecology Terms Abstract Importance: This study identifies specific language used for common problems seen in gynecology. Objective: To better identify language used by patients for gynecological conditions and understand how these terms may differ between communities. Study Design: observational qualitative study. Setting: An urban academic hospital. Population : Adult female patients (aged 18 and older) seen in the gynecology clinic were included, and those younger than 18 and non-English speakers were excluded. Methods: Interviews using a structured interview guide were conducted. New patients were enrolled in the study until the point of theoretical saturation. Key terms were identified and trends involving symptoms were investigated using natural language processing (NLP) techniques including lemmatization, text similarity, and sentiment. Outcome measures: Terminology gathered from study interviews was described. Results: 30 patients completed the study. Study participants included 12 (40%) Black patients, 9 (30%) White, 4 (13.3%) Hispanic and 3 (10.3%) Asian. Participants were equally distributed in age and most participants had attended some college 26 (86.6%). Almost half of the women had not been pregnant, 14 (46.7%). While many patients used some medical specific terminology, many also used symptoms specific common terms that were more descriptive of their experience. Patients identified “cysts” more commonly than “fibroids” and were concerned about cancer. Overwhelmingly patients identified communication problems between providers and patients resulting in misunderstandings and a lack of trust. Conclusion: By starting with identifying specific language used and expanding to identifying overall themes, we can improve understanding between patients and providers. Funding: Internal Keywords: gynecology, language Funding: This study received internal funding from the Department of Obstetrics and Gynecology and no external funding. Introduction Prior studies have shown that at least 25% of women aged 20 years or older suffer from urinary incontinence, fecal incontinence, or pelvic organ prolapse (1). Additionally, uterine fibroids are the most common pelvic tumor found in women and heavy menstrual bleeding affects 10-35% of women of reproductive age (2,3). While gynecological problems are common, many patients do not seek care at all or seek care in the emergency department (3-6). Barriers to seeking care for common gynecological conditions include inadequate understanding and knowledge about these common conditions and limited knowledge of their treatment options (5). Additionally, prior studies have found that low health literacy around gynecological and pelvic floor problems is a barrier to seeking care (3,7). Wiselander and colleagues conducted a qualitative study utilizing patient focus groups and found that physicians’ avoidance of technical names in favor of descriptions such as “bladder has fallen down” or “uterus has fallen down” contributed to patient-provider miscommunication. However, these same patients also found that physicians often used complex language they did not understand (6). Women are also unlikely to reveal symptoms of fecal incontinence in conversation but indicated severe symptoms in a written questionnaire. For example, patients complaining of “diarrhea” were seeking care for fecal incontinence (8). Misunderstanding by both providers and patients can lead to reduced access to care, misdiagnoses, and lower utilization of treatment options. There has been research centered on concordant language (speaking the same language) between providers and patients to improve health care outcomes and patient comfort with varying findings. Some studies found that patients valued language concordance secondary to provider competence (17), while other studies have found that provider-patient language concordance increases patient trust in their health care (18). With English speaking providers and patients there has been little research on specific terms used by patients when describing gynecological problems, patterns of language used in communication, and differences amongst social groups. While past studies have demonstrated that patients may have preferences for specific terms to describe these disorders, data is lacking on specific terms patients may use to refer to gynecologic conditions in their daily lives and communities. Our objective was to perform a qualitative study to better identify the terms patients use to refer to common gynecological conditions including pelvic floor disorders (e.g. urinary and fecal incontinence, pelvic organ prolapse), fibroids, menstrual disorders, and menopause, and understand how these terms may differ between communities. By understanding what terminology patients use and in what context we can then use this information to improve patient-provider communication and reduce barriers to accessing and receiving care. Methods The study was conducted at a large academic hospital in an urban setting. While most patients were recruited from the gynecology clinics, recruitment also included primary care clinics, local social media and flier advertising. Female patients aged 18 and older were included and non-English speakers were excluded. Non-English-speaking patients were excluded from this study because the research staff was unequipped to conduct in-depth interviews in non-English languages. All patients in the study participated voluntarily and were compensated with a $50 gift card. This study received IRB approval (University of Chicago ID# IRB18-1043). Patients attending any gynecology appointments were identified at their appointment. They were given an interest form to complete on paper, or electronically using a QR code link. Patients were then called and invited to participate in a semi-structured interview via telephone or in person interview pending their availability. On the interest form they self-identified their age, race, ethnicity, level of education, if they were working and if so if they worked in the medical field, the number of pregnancies they had if any, and the times and days of the week they would be available for the interview. We tracked all participants by their above demographic factors and sought to equally select from all. Some groups were specifically sought out- such as younger participants- as the study progressed to adequately sample from all demographic groups. We conducted individual semi-structured interviews in person or over the phone. The interview guide was developed in conjunction with the Survey Lab at The University of Chicago and the questions were based on female anatomy. The interview guide (Figure 1) sought to ask non-leading questions to understand and elicit language used by participants and corresponded with seven conditions/anatomical areas of interest including periods, fibroids, bowels, menopause, prolapse, urinary symptoms, and vaginal symptoms. These main topics were chosen by the study authors as common problems experienced by a range of patients. All interviews were recorded and transcribed from a digital recorder using a combination of manual and automated transcription (Otter AI transcription service). Interview themes and keywords were then identified independently from each interview by three study staff through review of the interview transcripts and a final list of themes was then compiled through consensus. If there was a difference in themes identified another theme was added rather than omitting one. New patients were enrolled in the study until the point of theoretical saturation, or when no new themes or ideas were brought up in the interviews, reached after 30 patient interviews, similar to studies in the literature (15,11). In addition to specific terms and themes recorded in the interviews, we also noted several overarching themes described by many participants. Overall, we collected 292 patient forms (43 via paper forms and 249 via QR code use) and contacted 100 patients using our sampling strategy outlined above. Of those, 30 completed an interview. Of those who did not participate in an interview after expressing interest, reasons included difficulty finding time and dissatisfaction with their ability to find a quiet environment for the interview. We also analyzed participant verbal responses to study trends in terms of frequency and sentiment across topics and demographics through a series of steps. Words involving symptoms were identified through a linguistic process known as lemmatization, to then assess trends in their usage with the help of natural language processing (NLP) techniques, overall and across different patient demographic groups. Lemmatization involves grouping together a word’s inflected forms and treating them as a single unit for analysis (16). First, we conducted a basic text cleaning and then conducted lemmatization. Word frequency analysis was then performed overall and by question groups identified ex ante , thematically characterizing our seven conditions/anatomical areas of interest. For each of these areas, the terms in their corresponding key word list were compared to the lemmatized text created from each participants’ responses and the presence or absence of our clinical terms of interest in the answer corpus was tested in a sequential way using four conditions. The first condition tested was whether the exact term was present or not in the interview transcript. The second condition was whether the term was not exactly present, but a synonym of the term was present (e.g. “pain” and “soreness”). The third condition was whether the term was not present, but a syntactically similar term was present. The fourth condition was whether the term was not present, but a semantically similar term was present (e.g. “pain” and “ibuprofen”). For the second and third conditions, a Jaro-Winkler string similarity measure (0-1) was obtained between each word pair, and a range of 0-.75 was set to consider the pair sufficiently similar such that a given clinical term of interest would be considered to have been mentioned. For the fourth condition, the list of terms considered semantically similar to our clinical terms of interest was generated using a Word2Vec language model trained on a publicly available set of clinical notes. Words that had a tendency to appear together were considered semantically similar at a threshold of 0.85 (0-1). In this setting, the word “oncologist”, for instance, would be considered semantically as “cancer”. Once the occurrence of terms was analyzed in conjunction of these four conditions, we tested to see if the proportion of participants who mentioned each term was significantly different between different demographic groups such as premenopausal vs postmenopausal participants using Fisher’s exact test. Fisher’s exact test was used as it suited our data’s binary nature and low sample size. Chi-square analyses or t-tests were also used to compare demographic data between patients. Finally, sentiment analysis was conducted for each term in the answer corpus of each participant, using a pre-trained sentiment model with individual term as the unit of analysis. Statistical analysis was be performed using R programming language (R Foundation for Statistical Computing, Vienna, Austria. URL http://www.R-project.org). All code used is available in a public repository (https://github.com/ElenaBadilloG/GyneConditions). Results Overall, 30 patients were enrolled and completed the study. Study participants who were interviewed included 12 (40%) Black patients, 9 (30%) White, 4 (13.3%) Hispanic and 3 (10.3%) Asian. Participants were equally distributed in age with more patients aged 18-29 than other age groups. Most participants had attended some college or achieved a bachelor’s degree 26 (86.6%). Almost half of the women had not been pregnant, 14 (46.7%). Many participants, 13 (43.4%), who described themselves as unemployed non-students were retired and comprised primarily older participants (Table 1). Under the theme of “period” the most common descriptors included “pain” “cramp” and “bleeding”. Many patients also mentioned “endometriosis” as a specific medical term they use and had heard used by friends and family members. “Work” and “fatigue” were also mentioned and associated with periods. In reference to growths on the uterus, most participants mentioned “cysts” and fewer specifically named “fibroids”. Patients were also worried about “cancer” and “tumor” and used these terms when talking about uterine growths. While menopause was only mentioned 2 times, most described the feelings they experienced or heard about including “bloating”, “hormone”, “mood”, and “headache”. Interestingly, “prolapse” was mentioned as well as specific anatomical terms including “cervix” and ‘uterus”. Many associated prolapse with “birth” and some described a “fall” more so than a “bulge”. In describing incontinence, again many patients described “pee”, “leak”, and “cough”. Several medical terms such as “incontinence”, “urine”, and “urinary” were also used. When describing vaginal symptoms many patients used the term, “vagina” as well as specific symptoms of “itch”, “infection”, “discharge”, and ‘dry”. While we asked about general terms used with family and friends, we noted that many participants referenced their experience with the health care system, specific nurses and doctors they had interacted with. They often used terms specific to the problems they had in the past or were being seen for around the time of the interview (Table 2). When we compared term usage between demographic groups, we found that some terms were consistent between groups, some groups used more technical language, and there were some race-based and age term differences. Overall, we found that subjects with medical backgrounds used more technical/anatomical terms. This is seen clearly in terms like ”prolapse” (60% vs 12%, p=0.041) and ”protruding” (40% vs 4%, p=0.064). Subjects with a medical background were also more likely to use precise anatomical terms like ”uterus” (40% vs 12%) when compared to those without a medical background. While Black participants were more likely to mention ‘cancer’ (31% vs 0%, p=0.026), Non-Black participants were more likely to mention ‘back pain’ (35% vs 7.7%, p=0.10), and ‘pain’ and ‘cramps’ were commonly mentioned by both groups (>50% each). When asked about menopause, most symptoms were reported more by premenopausal women, with ‘back pain’ more commonly used in premenopausal women (30% vs 10%). ‘Mood changes’ were exclusively reported by premenopausal women (15% vs 0%) and ‘pain’ was commonly reported across both groups (65-70%). Overall, ‘pain’ and ‘cramps’ were the consistently most mentioned terms across all groups. Technical or anatomical terms were more often used by those with a medical background regardless of other demographics. Emotional or experiential terms (mood, fatigue) were more common in younger or premenopausal participants (Table 3). We also asked questions about patients experience with the health care system and solicited feedback about improving communication between providers and patients. When asked about communication with their providers, many non-White women expressed that race concordance with their provider would remove some barriers to feeling unheard. Some patients described feeling ashamed to discuss certain gynecology topics or being “shamed” by their provider. Several participants also described feeling as though they were not being listened to. Many women described fear or anxiety about seeking care, reluctance to discuss gynecological problems, worried that their concerns were viewed as minimal, and that no further care would be offered. Many also did research on their own and many did not bring up concerns to their provider opting to “wait it out” or try home remedies. When offering suggestions to improve communication in a health care setting, a couple participants felt that even when told their concern or condition was “normal” they didn’t feel “normal”, and they continued to be worried after they left their provider (Table 4). Main findings In this study we were able to elicit specific language about common gynecological conditions as well as overall themes. Overwhelmingly patients identified that there are communication problems between providers and patients resulting in misunderstandings and a lack of trust. There were several suggestions made by study participants to help improve communication including improved listening by providers and empathy to their lived experience. Strengths and Limitations Strengths of our study include the use of an interview guide to ask non-leading questions about sensitive topics. We conducted in depth interviews where participants answered questions and also spoke about their experiences. We were able to enroll a diverse patient group to capture variation in language and themes. Limitations of our study include that we had difficulty recruiting younger patients and those with a less than college educational attainment. We tried specific targeting with posts on social media forums, the use of a QR code, and posting fliers in community and campus areas, but we continued to have difficulty enrolling younger participants with less than a college level of education. We were unable to conduct this study in languages other than English. Future studies conducted in other languages may elicit different language and region-specific terminology. Because we recruited primarily from the gynecology clinic, we interviewed participants who had some interaction with the health care system. Despite this, many participants spoke about their hesitation to discuss gynecology topics with their providers. Interpretation Prior studies have shown that poor communication leads to poorer patient outcomes (20). There has been a renewed focus on improving patient-provider communication in recent years. The Joint Commission International in 2018 described the link between poor communication and poorer health outcomes. They described several ways to improve patient-provider communication and identify barriers to effective care (21). Discussing specific language use, and variation by groups could add to improvements in communication (22). Future studies investigating language use in non-English speaking groups, and larger studies in different geographic regions could are needed. Conclusion By starting with identifying specific language used and expanding to identifying overall themes, we can start to improve understanding between patients and providers. Coupled with provider education on the role of effective communication with recognition of specific language is gravely needed. Declaration statement Contribution of authorship: SI: conception, planning, data capture, analysis, writing EB: analysis, writing DG: conception, planning, writing BH: planning, data capture, analysis, writing Disclosures: None of the authors have conflicts of interest. The study was approved by the University of Chicago Institutional Review Board (IRB18-1043) January, 2023. Funding: This study received internal funding from the Department of Obstetrics and Gynecology and no external funding. References 1 Mandimika et al. Racial Disparities in Knowledge of Pelvic Floor Disorders Among Community-Dwelling Women Female Pelvic Med Reconstr Surg. 2015 Sep-Oct; 21(5): 287-292. 2 Patient understanding of uterine fibroids and the different surgical approaches to hysterectomy. Belilovets et al. Womens Health Rep (New Rochelle). 2020; 1(1):252-258. 3 Prevalence and knowledge of heavy menstrual bleeding among African American women Marsh et al. Int J Gynaecol Obstet. 2014 Apr; 125(1): 56-59 4 Robinson et al. International Urogynaecology Consultation chapter 1 committee 4: patients’ perception of disease burden of pelvic organ prolapse Int Urogynecol J. 2022 Feb;33(2):189-210. doi: 10.1007/s00192-021-04997-3. Epub 2022 Jan 3. 5 Hatchett et al. Knowledge and Perceptions of Pelvic Floor Disorders Among African American and Latina Women. Female Pelvic Med Reconstr Surg. 2011 Jul; 17(4): 190-194. 6 Wieslander et al. Misconceptions and miscommunication among Spanish-speaking and English-speaking women with pelvic organ prolapse. Int Urogynecol J. 2015 Apr;26(4):597-604. doi: 10.1007/s00192-014-2562-z. Epub 2014 Dec 17. 7 Ossin et al. Shared decision-making in urology and female pelvic floor medicine and reconstructive surgery. Nat Rev Urol 2022 Mar;19(3):161-170. doi: 10.1038/s41585-021-00551-4. Epub 2021 Dec 20. 8 Cichowski et al. Written versus oral disclosure of fecal and urinary incontinence in women with dual incontinence. Int Urogynecol J. 2014 Sep;25(9):1257-62. doi: 10.1007/s00192-014-2393-y. Epub 2014 May 8. 9 Philipp CS et al. Development of a screening tool for identifying women with menorrhagia for hemostatic evaluation. Am J Obstet Gynecol. 2008;198(2):163.e1–e8 10 The North American Menopause Society. Menopause Health Questionnaire. July 2005 11 Iyer et al. Patient perceptions impact progression to third-line therapy for treatment of overactive bladder. J Urol. 2021 Nov;206(5):1240-1247. doi: 10.1097/JU.00000000000001950. Epub 2021 Jun 29. 16. Liu H, Christiansen T, Baumgartner WA, Verspoor K. BioLemmatizer: A lemmatization tool for morphological processing of biomedical text. Journal of Biomedical Semantics . 2012;3(1). doi:10.1186/2041-1480-3-3 17. Binder P, Borné Y, Johnsdotter S, Essén B. Shared language is essential: communication in a multiethnic obstetric care setting. J Health Commun. 2012;17(10):1171-86. 18. Daggett A, Abdollahi S, Hashemzadeh M. The Effect of Language Concordance on Health Care Relationship Trust Score. Cureus. 2023 May 26;15(5):e39530. 19. Patak L, Wilson-Stronks A, Costello J, Kleinpell RM, Henneman EA, Person C, Happ MB. Improving patient-provider communication: a call to action. J Nurs Adm. 2009 Sep;39(9):372-6. 20. Bartlett G, Blais R, Tamblyn R, et al. Impact of patient communication problems on the risk of preventable adverse events in the acute care settings. CAMJ. 2008;178:1555–62 21. Communicating clearly and effectively to patients: How to overcome common challenges in health care. Joint Commision International white paper 2018. https://www.jointcommissioninternational.org 22. Stableford S, Mettger W. Plain language: a strategic response to the health literacy challenge. J Public Health Policy. 2007;28(1):71-93. Figures and Tables Figure 1: Interview guide Table 1: Participant demographic characteristics Table 2: Common terms used by topic Table 3: Variation in terms used by subgroup Table 4: Overall themes from the interviews Supplementary Material File (figure1_interview guide - pelvic floor conditions.docx) Download 3.24 MB File (gyn_terms_tables_bjog.docx) Download 28.80 KB File (strobe_checklist_cross-sectional_gyn terms manuscript.docx) Download 32.62 KB Information & Authors Information Version history V1 Version 1 15 May 2025 Copyright This work is licensed under a Non Exclusive No Reuse License. Collection BJOG: An International Journal of Obstetrics and Gynaecology Keywords general gynaecology medical education qualitative research Authors Affiliations Iyer S 0000-0003-3691-7593 [email protected] University of Illinois Chicago Department of Obstetrics and Gynecology View all articles by this author Badillo-Goicoechea E The University of Chicago Department of Public Health Sciences View all articles by this author Glass D Kaiser Permanente LLC View all articles by this author Huepfel B University of Illinois Chicago Department of Obstetrics and Gynecology View all articles by this author Metrics & Citations Metrics Article Usage 211 views 183 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Iyer S, Badillo-Goicoechea E, Glass D, et al. What patients call gynecological conditions: A qualitative study. Authorea . 15 May 2025. 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