Patients’ motives and considerations on treatment decision-making for heavy menstrual bleeding: a qualitative study

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Oderkerk, R.G. Singotani, L. Zuidema, E.J.E. Hijden, P.M.A.J. Geomini, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4381693/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 02 Aug, 2024 Read the published version in BMC Women's Health → Version 1 posted 9 You are reading this latest preprint version Abstract Background Several treatment modalities for heavy menstrual bleeding are available. However, many women report being unsatisfied in their search for an appropriate and effective treatment. The aim of this study is to gain insights in the experienced impact of HMB and the motives and considerations of women during the decision-making process for different treatment options for heavy menstrual bleeding. Methods An interpretative qualitative study was performed, using in-depth interviews. In total, 14 semi-structured interviews were conducted with patients who consulted a physician for treatment of heavy menstrual bleeding. Participants were recruited via the Dutch Patient Federation (N = 10) or via the outpatient clinic in the Máxima Medical Centre (N = 4). The interviews were conducted by phone or online between February 2020 and March 2021. In the interviews three topics were addressed: 1) participants experience with heavy menstrual bleeding, 2) patient experience with treatment journey and 3) elaborating on alternative treatments for heavy menstrual bleeding. A thematic content analysis was conducted. Results Fourteen participants aged between 30 and 59 years old were interviewed. Three main themes emerged; “Considerations in taking the first step to seek help”, “Various sources of information can contribute, confuse or frighten decision-making process” and “A physician’s support and understanding is needed to guide the decision-making process”. Conclusion Our results show that women's considerations and decision making strongly depend on the obtained information and experience, the relationship with the physician, the influence of the social environment, the pre-visit expectations/ desires, the fear of treatment complications and uncertainty of the effect of the treatment. It’s a physicians roll to create a trusting and open atmosphere during consultation. Patient-centered communication is helpful to share knowledge, and gain inside into a patient’s hopes, fears and worries. Heavy Menstrual Bleeding qualitative study treatment decision-making BACKGROUND Heavy menstrual bleeding (HMB) has had many definitions over time, but now is defined as experiencing excessive menstrual bleeding that interferes with women’s physical, emotional, social and material quality of life. HMB affects roughly 30% of European women in reproductive age ( 1 , 2 ). Among women with HMB, only one in two seeks consultation from a physician, of which 70% receive treatment ( 2 ). Most reported reason to refrain from seeking help is unawareness of the disease and its treatment options ( 2 ). HMB is also perceived as embarrassing due to social stigmas associated with menstruation and beliefs left over from their mothers ( 3 ). There are several treatment options available for the treatment of HMB. Usually, the first step in treating HMB is a medical treatment such as the combined oral contraceptive (COC) or inserting progesterone via an intra-uterine system. The levonorgestrel releasing intra-uterine device (LNG-IUD) is a hormonal contraception and is proven as an effective treatment for HMB as it induces atrophy of the endometrial tissue ( 4 , 5 ). Endometrial ablation/resection (EA) is a good alternative for women with no further child wish. This treatment aims to stop endometrial growth by ablating the endometrial tissue and superficial myometrium ( 6 ). A hysterectomy is usually offered as the most effective option; however, it is a major and definitive procedure to treat HMB. Given the various treatment options for HMB, with each treatment having its own risks and benefits, women may be overwhelmed by so many options ( 7 , 8 ). Therefore, it is important to counsel women about the different treatment options, taking the patients preferences into account. A (shared) decision-making process involves sharing and discussing the best available evidence with patients and support them to weigh options, to enable informed decisions ( 9 ). Patient-centered communication can help to discover and intergrade patients' wishes, feelings, illness beliefs, concerns, expectations, and preferences during consultation ( 10 ). Previously published studies, summarized in the review of Zandstra et al (2017), specifically examined women’s preferences on the kind of (shared) decision-making. They concluded that information packages did not influence treatment choice, however structured interviews and computerized decision aids, which were integrated with patient preferences, were beneficial for treatment choice, reducing disagreement, and increasing patient satisfaction ( 7 ). However, the reviewed studies did not elaborate on the specific motives and experiences in the decision-making process that led to the decision for a treatment choice. Therefore, we performed this interpretative qualitative study to gain insights in the experienced impact of HMB and the motives and considerations of women during the decision-making process regarding treatment options for HMB. METHODS Study aim and design To gain insights in the experienced impact of HMB and the motives and considerations of women during decision-making for different treatment options for HMB, an interpretative qualitative study was performed, using in-depth interviews. Participants Participants were recruited using purposive sampling through the Netherlands Patient Federation (NPF) and Máxima Medical Centre (MMC). A specific questionnaire was developed to recruit NPF panel members. Participants recruited through the MMC received an information leaflet. All women that showed interest in the study, participated in an interview. Initially, only women experiencing HMB and treated with an LNG-IUD or EA were included. Criteria were broadened after five interviews, including women treated with oral (hormonal) medication and hysterectomy as well. Women who never consulted a physician for treatment of HMB were excluded. Participants were recruited until saturation was reached. Data collection Semi structured, in-depth interviews were conducted between February 2020 and March 2021 and lasted approximately 30 to 90 minutes. The majority of interviews were held during the COVID-19 pandemic and were carried out online or by phone. All interviews were conducted by two female researchers (RGS and TJO). RGS was a researcher at Talma institute with a background of qualitative research; TJO is a researcher and medical docter who was presents at all interviews for medical questions. Both researchers were introduced at the beginning of the interview. Fieldnotes were made during the interview. A topic list was used as a guide during the interviews. The topic list was developed based on the definition for impact by the Organization for Economic Cooperation and Development (OECD) and inspired by two models for treatment decision-making ( 11 – 13 ). Questions were developed to reconstruct patient journeys and gain insights on the motives and considerations of participants during the decision-making process regarding treatment options. Topics that were discussed included: symptoms and impact, treatment options and choice, communication and information and efforts and contributions in decision-making. The topic list included questions such as “What was the most important goal you wanted to achieve when visiting the gynecologist?”. The process of data collection and analysis was iterative, as the process alternated during the research. After five interviews, experiences varied and data saturation was not reached. Therefore, more interviews were conducted. Additionally, an option grid explaining advantages and disadvantages of the various treatment options was added to the topic guide to discuss treatment options for HMB. All interviews were audiotaped and transcribed verbatim. Data was collected until no new themes emerged. Data analysis A thematic content analysis was conducted using the revised six steps of thematic analysis as described by Braun & Clarke (2019)( 14 ). In the first phase, the researchers (TJO and RGS) familiarized themselves with the data by re-reading the transcripts. In the second phase, TJO and RGS independently fragmented and coded the transcripts inductively. The researchers familiarised themselves with the data set by reading and re-reading. They coded the first interviews independently and generated an initial list of codes. Memos about contradictions or additional questions were added. The initial list of codes and memos was discussed and if necessary, some alterations were made. In the third phase, the codes were sorted into initial themes. Patterns among the codes were identified by constant comparison. The themes were visually represented in a thematic map. In the fourth phase, the themes were reviewed, discussed and revised with two other researchers (MD and LZ). In the fifth phase, the themes were refined and used as a framework for the remaining interviews. If new patterns and themes emerged, these were added to the existing map. MAXQDA version 2021 (VERBI Software 2021) was used to organize all data ( 15 ). In the last phase, narratives were written up together with data extracts, and contextualized using literature. Rigor To enhance credibility, we sent a summary as member check of the interview to participants. Participants agreed and made no changes or suggestions. The topic list was discussed by two researchers after each interview to ensure dependability. A thick description is provided to describe the context of each participant (see Table 1 ). Lastly, to ensure confirmability, three (TJO, RGS, LZ) researchers developed themes based on the interviews. These were confirmed by MHD (peer debriefing). Ethical considerations The study protocol was approved by the Medical Ethics Review Committee of Máxima MC. Study procedures followed were in accordance with the Declaration of Helsinki. The study aim was explained to participants prior to the interview. Informed consent of all participants was obtained. Confidentiality was assured, using restricted access to the data and deidentification of the transcripts. Interview data was stored on a secured online Research Drive. RESULTS Patient characteristics Fourteen participants, aged 30–59, were interviewed. Most participants experienced symptoms of HMB for more than five years. Additionally, participants received different treatments for their symptoms. Most participants were treated with LNG-IUD or COC, and few with an EA or hysterectomy. See Table 1 for a complete overview of the general characteristics of the participants. Table 1 Baseline characteristics of the participants (n = 14) Age group (years) Nationality Highest level of education Duration of symptoms (years) Symptoms reported Received treatment(s) 1 40–44 Hungarian/ Dutch University 5–10 HMB, Fatigue LNG-IUD 2 55–59 Dutch University > 15 HMB COC, LNG-IUD, EA 3 50–54 NA NA > 15 HMB, Met COC, EA, OT 4 45–49 Dutch University 5–10 HMB, Dys COC, LNG-IUD, EA + LNG-IUD 5 55–59 Dutch HPE < 5 HMB COC, LNG-IUD 6 50–54 Dutch HPE 15 HMB, PMS, Dys, Fatigue COC, LNG-IUD 8 55–59 Dutch University 10–15 HMB, Met, Dys, PMS COC 9 35–39 Dutch SVE 5–10 HMB, PMS OT 10 30–34 Dutch SVE 5–10 HMB, Met, PMS COC, OT 11 50–54 Dutch NA 10–15 HMB, Fatigue COC 12 50–54 Dutch University > 15 HMB COC 13 50–54 Dutch University > 15 HMB COC, LNG-IUD, OT, HE 14 40–44 Dutch HPE < 5 HMB COC, OT, HE LNG-IUD = Levonorgestrel releasing intra-uterine device, COC = Combined Oral Contraceptive, EA = Endometrial ablation, HE = Hysterectomy, OT = Other treatments such as (contraceptive injection, Implanon, Hormone therapy, NuvaRing, Tranexamic acid), HMB = Heavy Menstrual Bleeding, Dys = dysmenorrhea, PMS = pre-menstrual syndrome, Met = Metrorrhagia, NA = No Available data, HPE = Higher professional education, SVE = senior Secondary Vocational Education Based on the analysis of the interviews, three main themes and fourteen subthemes emerged. Theme 1: Considerations in taking the first step to seek help Despite the impact of severity of bleeding on their daily life, participants often find it difficult to seek help for HMB. Some participants explained they hoped for a natural solution, like menopause, and most participants prefer not to be treated with hormones. 1.1 Impact on daily life and coping strategies Participants described their menstruation as heavy, illustrating this by examples of the amount, unexpectedness or duration of blood loss, and the impact on their daily lives. “Sometimes I was bleeding for 6–7 weeks in a row and then I wasn’t for 3 months, and then I was again for a day. I could not make any sense of it” (Participant 3) Participants mentioned that staining and leaking from HMB had major impact on their daily lives. Several participants explained how heavy bleeding at night impacted their sleep, as they had to wake up every few hours to change menstrual products. Moreover, some participants explained how HMB made them feel ‘dirty’, or ‘unfresh’. “Judo is a full contact sport, and if you don’t feel fresh, it is very difficult to be close to others. So that really bothered me for a very long time” (Participant 14) Adequate coping strategies to deal with HMB were found by the participants. For example, participants used different menstrual products simultaneously, such as a tampon and a sanitary pad. Others explained the need to bring an extra pair of clothes to work or when traveling outside. “I’ve had to uh, uh, change pads and tampons every hour, so- And then uh, I always had extra clothes with me. So, so um, I just couldn’t do anything. I couldn’t leave {the house}, so to speak. I couldn’t even work anymore. Yes, I was there, but um, with an eh, with a pack of sanitary pads and tampons in front of me.” (Participant 13) For several participants, the major impact of HMB on their daily life motivated them to seek medical help. Often participants described a change in complaints or a personal limit that was reached, leading them to visit their GP for help. “Even at night I had a tampon in and I had a sanitary napkin in and even then, my whole bed was destroyed. I just had to get new mattresses, because you just leak through. And then you're like now something has to be done.” (Participant 2) 1.2 Seeking help is hindered by embarrassment Few participants found it embarrassing to go to the GP to talk about their menstrual complaints and expose their bodies. They found it very unpleasant to undergo vaginal examinations, especially when they are menstruating. This is a reason for participants to delay seeking help. “But I always think that it is the most um, well I really go to a doctor a lot, but um, this kind of appointments, I find, I find it embarrassing. I don't know. It makes me feel uncomfortable as a woman.” (Participant 8) 1.3 Resistance towards hormones plays a crucial role Several participants expressed that hormone treatments contributed to their rejection or withdrawal from treatment. Many participants indicated that hormones caused side effects, such as mental health issues (mood swings and depression). Participants also expressed that hormonal treatments do not always reduce blood loss and premenstrual symptoms. Furthermore, many participants mentioned that taking hormones does not feel natural. "Nausea, vomiting, headaches. Yes, headache and- Look, swollen breasts and belly you always have. But it was like when I took the pill that it got much worse.” (Participant 7) 1.4 Menopause as a solution Other participants hoped for the menopause as a natural solution. Many participants dealt with the symptoms for many years, so waiting for menopause was also considered as an alternative to the other non-invasive or surgical treatments. Some participants said that they would take the final years of blood loss for granted until they reach menopause and the bleeding stops. Theme 2: Various sources of information can contribute, confuse or frighten decision-making process Different sources of information contribute to a participant’s knowledge of different treatment options and therefore their decision-making. These sources include one’s own experience, experience or opinions of others, online information, and information and opinions provided by the physician. Sometimes knowledge also causes fear or uncertainty for a particular treatment or result. 2.1 Information provided by physicians The information received by the participants varied enormously. Some participants were well prepared for the risks and benefits of a treatment, while others were completely overwhelmed by post-operative complications or side effects. Specifically, most participants reported that they were not prepared for the abdominal pain after EA. “"I was just given a leaflet, and it just says how the treatment works and not what might happen afterwards. Yes, they tell you that you could have less blood loss and that you are going to have that novasure treatment. (...). I just read the leaflet about how or what the treatment itself entails.” (Participant 3) 2.2 Social environment steers and confuses decision-making process In the interviewee's environment, there were many differing opinions and experiences about the different treatments for HMB. Some participants reported negative experiences from their social environment about certain treatments. These experiences contributed to a patient’s decision whether to opt for that specific treatment. In particular, there were many varying stories about side effects of the LNG-IUD, side effects of hormones and pain after EA. "No, because I have two friends who had IUDs and they got pregnant with twins. So that didn't work out either. And they weren't yet, they did not have a desire to have children, (...) So you always have to weigh up what you can and can't do and the experiences of others. And that's what you actually do it with." (Participant 10) 2.3 Motives to acquire information themselves Another source of knowledge can be from self-acquired information. Participants explained to have the need to look up stories and experiences on the Internet. Some information contains negative experiences about treatments gone wrong, but there are also stories about the positive effects of treatments. However, many participants said that they were mainly looking for information on how the treatment would proceed, so that they would be well prepared. "Certainly not because not all the stories you read are equally positive. Hey, it's, it's also, there are some horror stories, I might be too down-to-earth for that. Of course, it depends on each person and what is your pain threshold. And what do you think is a lot and what kind of things do you mind? So, you have to filter that. And there were very few positive stories, about how well things are going. So you don't find those either.” (Participant 4) 2.4 Past experiences influences decision-making One's own previous experience with a particular treatment also plays a major role in the decision-making process. Many participants mentioned a negative experience with, for example, the side effects of hormones, making them reluctant to choose a treatment containing hormones. However, other participants had good experiences with hormones (oral contraceptive pill of the LNG-IUD), which made them feel positive about this treatment and ultimately made the choice of treatment easy. “Only the second time it really backfired. I kept getting my periods, I kept having a lot of trouble with my legs, my back, my breasts, my stomach, those migraine attacks. Nothing helped. So, I had the Mirena [LNG-IUD] removed.” (Participant 7) 2.5 Some sources of information increases fear for worsening Some participants considered treatment as a solution to their complaints, while other participants saw the treatment as an obstacle. Participants mentioned fear of complications as a consideration to reject a specific treatment. For example, participant five mentioned the following regarding EA: “ Yes, because with me it was the fear that it was going to stick together [adhesions] I am afraid then you don’t have insights into it. That was not an option for me, also.” (Participant 5) Furthermore, all participants suffered from the symptoms of HMB and wished for improvements in their quality of life. Some participants were afraid of worsening of the symptoms or the possibility that the treatment would not relief their symptoms. “ I mean, if you go for a treatment, then, of course you want your problem to be solved in the end, but also you don't want a new problem to arise. Or another problem or, or the same problem in, in- Yes, that, you don't want that. You want your problem to be solved in the end.” (Participant 9) The potential effects of the treatment on their daily life were also a consideration. For example, abdominal pain after an EA and not being able to continue with daily activities were considered as disadvantages of EA. Other participants did not prefer a hysterectomy. This treatment was seen as invasive and painful, and it required longer recovery time. “Um, well the pain um, I was um, very afraid of it anyway. And I had heard stories about other people who had been in a lot of pain. So I was, I thought, very exciting. And the period afterwards of eh, I'm quite a busy bee. And then the six weeks of doing nothing and, eh, in principle not being allowed to lift a carton of milk, I really dreaded that.” (Participant 14) The participants who had a hysterectomy expressed that taking a short break from daily activities due to the surgical procedure was as a slight setback. “ Um, so those advantages did far outweigh the disadvantages for me. The disadvantages are that you just have a long recovery, it's quite an operation and I was a bit worried about that. But um, it's also been a tough journey in the end, because it was a tough ok, but um, yes, it's the best decision I could have made, I think.” (Participant 13) Theme 3: A physician’s support and understanding is needed to guide the decision-making process For the patient's final choice of treatment, the decision moment together with the physician is very important. A physician's attitude is very important to the patient in this situation. It is important that the physician listens to the patient expectation of a treatment. 3.1 The importance of the feeling of being heard Participants emphasized the importance of the relationship with their treating physician in their decision-making. To them, being heard and taken seriously during consultation was important for their appraisal of the relationship. “When the internist took me seriously about the anemia, that really made me feel supported” (Participant 12) Although some participants were appreciative of the relationship, others did not feel heard by their physician. Some participants mentioned that the physician did not notice their symptoms of HMB at first. Others mentioned that their physician did not take their pain seriously, which made some participants feel like their complaints were “trivial”. All these factors led to a feeling of not being heard by a physician. “Well, I think I had a really bad stomachache 7 to 14 days {after treatment}. And if you indicate that and they {physician} say: 'yes, that's part of it'. Then I think: this is not part of it, I believe I took ibuprofen 600mg and then three to four a day. Then I think: I don't think this is normal. There was something wrong with that. Well, that was not picked up. I regret that.” (Participant 2) 3.2 Expressing one’s own choice is important Participants mentioned the importance of expressing one's own treatment preference. They expressed that an open relationship with their physician made it easier to express their wishes. Participants expressed that they appreciated being given the time to consider different treatments and make a shared decision. In contrast, in a relationship in which a physician is very directive, little space is left for a patient’s own choice. “Well, I actually wanted to go for Novasure {endometrial ablation} then, but then they thought I was too young for that. Then I was about forty and then they thought I was too young for that, while, I knew myself that I had no desire to have children, eh, I had no partner at that time” (Participant 11) 3.3 Prevailing opinion of the physician The participants often expressed that the treating physician strongly suggested which treatment the participant should undergo. Consequently, not all treatment options were presented to the patient. In particular, the option to perform a hysterectomy was often not discussed or was very quickly discarded for various reasons. "Yes, too young and all that, and we can always try other treatments. I say, yes other treatments, I don't see the point. If someone suffers so much, and not just for a moment but for a number of years. I don't want to have children, never have and never will. And it's the patient's wish, "Oh, I don't mind having my uterus removed. I don't see the point in it not being allowed or being possible. Because then I think, as a patient, I am actually being hindered in my choice, because they have already made a choice for me not to do it. While they do mention it as an option to be able to do it, ultimately”. (participant 3) 3.4 Trusting the physician matters Participants also mentioned that trust in the relationship with the physician is key. Some participants fully trusted their physicians and let them decide. “No, I didn’t have eh, no I didn’t have myself oh, I think, if I go to the gynecologist, he must know what is best” (Participant 10) Nevertheless, other participants mentioned distrusting their physician or their competence. Some reasons to distrust a physician were: inattentive to symptoms, rumors about certain physicians or a general practitioner (GP) refusing to refer a patient to a gynecologist. For some participants, this resulted in avoiding appointments with their physician. “Only I think she missed him {the myoma} the first time, because she did say, yes, I can see something, but then I have to get the other ultrasound machine and well. She didn’t then.” (Participant 12) 3.5 Expectations for treatment steers the decision When asking their initial preferences for treatment, some participants indicated they preferred the least invasive treatment such as hormonal contraception. Other participants preferred simple treatments like LNG-IUD. One participant mentioned preferring an LNG-IUD opposed to the COC, since it does not require taking a pill every day. In contrast, some participants considered hormonal contraception (taking a pill daily) as a simple treatment. “ And I'm always used to discussing with my doctor um, about well the, what options I have and um, um, you're not going to do the most drastic thing. So, I did have my mother as an example who eh, eh, lost her eh, uterus around her forties eh, because of those heavy periods. So, you discuss that then, but that's a, quite a procedure. So eh, I thought eh, I'll first go for an eh, option that eh, was less eh, invasive. And um, the pill was then a very obvious option.” (Participant 8) The majority of the participants suffered from HMB for several years and desired a mild or regular menstruation, or no menstruation at all. The participants emphasized that the burden of their complaints affected their daily life. Expected effects of treatment such as a decrease in blood loss and more control over their own life were mentioned as considerations for treatment. Many participants preferred a hysterectomy and considered it as a definitive solution. Participants mentioned ‘getting rid of all the symptoms’ or no more blood loss as advantages of a hysterectomy. Some of the participants had no desire to have more children and considered the uterus as unnecessary. One participant mentioned that if premenstrual symptoms would decrease as a result of a hysterectomy, she would prefer a hysterectomy. “ Coming from me, I would have said: take out the whole uterus and be done with it. I would have said the same thing 10 years ago, gee, I don't mind if it's taken out. “(Participant 3) DISCUSSION The aim of this study was to gain insights in the experienced impact of HMB and the motives and considerations of women during the decision-making process regarding treatment options for HMB. The three main themes that emerged are “Considerations in taking the first step to seek help” (Theme 1), “Various sources of information can contribute, confuse or frighten decision-making process” (Theme 2) and “A physician’s support and understanding is needed to guide the decision-making process” (Theme 3). The burden of HMB on daily life were an important reason to seek for help, but differed enormously between the participants. This is in agreement with Chapple et al. (1999) who found that symptoms which “started to disrupt their lives’ were commonly the trigger to seek medical help and differ between women”( 16 ). This seeking of help is a stepping stone, first the menstrual bleeding needs to be perceived as ‘abnormal’ and then to decide whether seeking medical help is legitimate. The interviews revealed some participants had a negative connotation towards hormone-containing treatment, mainly due to the perception of administered hormones not being natural. The study of den Brink et al. confirms this finding, as further explained below( 17 ). Women's knowledge about the treatments comes from a variety of sources, such as the Internet, their own experiences, those of others, and the opinions of their physicians. The opinions and experiences of people in the social environment contribute a great deal to the choice of treatment. In the study of Vuorma et al., proximally one in three women (17–34%) felt like they were not sufficiently informed by the physicians on the benefits and complications of the different treatment options for HMB. Preferences regarding treatment were most strongly associated with women's pre-visit preferences ( 18 , 19 ). Many participants considered treatment for HMB as an obstacle, as they fear side effects, complications and disruption of daily life. Participants were also afraid that treatment would worsen their symptoms. Therefore, many participants favored the least invasive and least risky treatment. This finding is also in line with the results of van den Brink et al. (2018) ( 17 ). They studied women’s preferences for treatment of HMB and concluded that the presence of hormones, the (ire)reversibility of the treatment and the effect on irregular bleeding were important in making a decision regarding treatment options ( 17 ). In our study, participants mentioned the presence of hormones as a reason for not choosing a specific treatment. Nevertheless, the study of Brink et al. does not elaborate on the specific motivations of women during the decision-making process. The experienced relationship with a physician played a major role in the participant’s treatment decision-making. Participants expressed that the feeling of being heard, trust in the physician and being able to express one’s own choice were important in the appreciation of the relationship. Experiences of participants varied, some valued the relationship with their physician, while others felt distrust towards their physician. The opinion of physicians seems to dominate the decision-making process. Eising et al. (2018) explored key factors for successful support in patients with Von Willebrand disease, faced with HMB ( 20 ). Their research found that a precondition for support is a good relationship with a physician: a trusting relationship, where information can be shared. The findings in this study are in line with findings from Eising et al. (2018). According to the research of Skea (2004), 75% of the women who underwent a hysterectomy for HMB preferred to make the decision together with their physician. Four percent of the women preferred the physician to make the decision, and 2% wanted to make their own decision ( 17 ). The participant’s desired outcome of the treatment varies from still have a mild menstruation by undergoing a simple treatment and to a definitive solution by an invasive treatment like a hysterectomy. The participants had different expectations towards the treatment such as expected invasiveness of the treatment or effectiveness of the treatment. Expectations like these steered the final treatment decision. Kennedy et al. conducted a randomized controlled trial to evaluate the effect of structured preference elicitation interviews during the decision-making process for treatment of HMB ( 20 , 21 ). The first group received a video explaining the different treatment options, while the second group also met with a research nurse. Concluding, women who got the chance to elaborate their preferences, less often underwent hysterectomy after two years of follow up. Also, satisfaction rates were higher and health care costs were lower in the group of women who were seen by the research nurse. This is consisting with the results of our article. This highlights the importance of understanding woman's motivations and considerations when deciding on a treatment. A helpful tool to counsel the advantages and disadvantages of the various treatment options in the consulting room is the use of an option grid, commonly used in the Netherlands. This card briefly explains the success rates of the various HMB treatments as mentioned above, as well as the benefits and harms. Strengths and limitations A strength of this study is that by using in-dept interview methods we were able to foster a safe environment to gain the participants’ trust to share their experiences. Another strength of this study is that we interviewed women who had experienced HMB over a variety of years and were therefore at varying stages of the disease with a variety of treatment experiences. We aimed to ensure transferability by providing thick description of each participant. We used impact in the topic list which gave us many empathetic insights from the participants. Additionally, the topic list was discussed by two researchers after each interview and adapted after five interviews, thereby ensuring dependability. Finally, participants received a summary of the results, as form of a member check. Our study was limited to the experiences and considerations of women who received treatment of HMB. Experiences of women who have never sought medical consultation or consulted a physician but refrained from treatment were not included. Since we recruited respondents through questionnaires and flyers, it is possible that self-selection bias occurred. ( 21 ) It is possible that we only interviewed participants who were comfortable with sharing their stories, leading to a bias in the data. It is also possible that the panel members who participated in this study were more assertive and aware than the average patient. Amongst the participants, there is diversity in terms of age, education level, years of experience with HMB and type of treatment. Unfortunately, there is little variation in nationality. As a result, topics such as culture and religion and whether these factors play a role in considerations for treatments are not included. The data was retrospectively collected, which may have increased the possibility of recall bias. Women who consulted a physician five years prior to the interview were eligible for our study. Recall bias was minimized by recruiting women through the patient clinic of MMC who were in the midst of their treatment. Motives and considerations regarding the received treatment may be influenced by the effectiveness of the received treatment, the moment in the patient journey and previous experiences of treatments for HMB. Recommendations Our results suggest that a patient’s treatment decision is influenced by the attitude and communication of their physician. The findings of this study allow for the formulation of a few recommendations. Most significantly, it is critical to foster an environment of open communication during consultations so that the patient feels at ease with the physician. Patient-centered communication is a helpful communication tool to use during consultation ( 10 ). It acknowledges the entire person, their personality, life history, and social structure in order to develop a shared understanding of the problem, treatment goals, and barriers to those goals. This allows us to gain an understanding of the motivations for a certain belief, experience, or knowledge from the perspective of women. It is also important to consider that shame and discomfort may play a role in the decision to consult a physician. Participants of this study particularly valued being informed about all possible treatments for HMB, including the advantages and disadvantages of each treatment. The option grid is a helpful tool to use during the decision-making process. In future research, we recommend a prospective study with a long follow-up following women from the onset of their patient journey to investigate all possible factors influencing treatment decisions. CONCLUSION This study provides insights into patients’ motives and considerations during decision-making for treatments of HMB, but also in the long and confusing journey some participants experienced. The first obstacle to overcome for women with HMB is to decide that help is needed (again). Main considerations in the decision-making process include obtained information and experience, relationship with the physician, influence of the social environment, pre-visit expectations/ desires, fear of treatment complications and uncertainty of treatment effect. It is the role of the physician to create a trusting and open atmosphere during consultation. Patient-centered communication is helpful to share knowledge, and gain insight into a patients’ hopes, fears and worries. Additionally, it is essential to offer the patient comprehensive information to support informed decision-making. Abbreviations HMB = heavy menstrual bleeding LNG-IUD = levonorgestrel-releasing intra-uterine device EA = endometrial ablation NPF = Netherlands Patient Federation (Dutch patient federation) COC = combined oral contraceptive Declarations Ethics approval and consent to participate The study protocol was approved by the Medical Ethics Review Committee of Máxima MC corresponding number N20.025 / L20.027. The study aim was explained to participants prior to the interview. Informed consent of all participants was obtained. Study procedures followed were in accordance with the Declaration of Helsinki. Consent for publication Not applicable. Availability of data and materials The datasets used and analysed during the current study are available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests. Funding No funding Contributions All authors took part in designing the study. TJO and RGS conducted the interviews and transcribed the audio recordings to text. TJO and RGS performed the initial analysis and identified and organized the meaning units into codes and preliminary groups of themes. TJO, RGS, LZ and MHD participated in developing a final structure for the themes and subthemes. TJO, RGS and LZ made a first draft of the article. TJO and LZ finalized the manuscript in cooperation with PMAJG, EJEH, MYB and MHD. All authors read and approved the final manuscript. Acknowledgements The researchers thank all the participating women in this study. Corresponding author Correspondence to Tamara Johanna Oderkerk and Lisa Zuidema References Practice bulletin no. 128: diagnosis of abnormal uterine bleeding in reproductive-aged women. Obstetrics and gynecology. 2012;120(1):197-206. Fraser IS, Mansour D, Breymann C, Hoffman C, Mezzacasa A, Petraglia F. Prevalence of heavy menstrual bleeding and experiences of affected women in a European patient survey. International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics. 2015;128(3):196-200. Kamaludin SAN, Zhang XR, Shorey S. Perspectives of women experiencing Menorrhagia: A descriptive qualitative study. J Clin Nurs. 2019;28(13-14):2659-68. Lethaby A, Hussain M, Rishworth JR, Rees MC. Progesterone or progestogen-releasing intrauterine systems for heavy menstrual bleeding. The Cochrane database of systematic reviews. 2015(4):Cd002126. Beelen P, van den Brink MJ, Herman MC, Geomini P, Dekker JH, Duijnhoven RG, et al. Levonorgestrel-releasing intrauterine system versus endometrial ablation for heavy menstrual bleeding. American journal of obstetrics and gynecology. 2021;224(2):187.e1-.e10. Munro MG. Endometrial ablation. Best practice & research Clinical obstetrics & gynaecology. 2018;46:120-39. Zandstra D, Busser JAS, Aarts JWM, Nieboer TE. Interventions to support shared decision-making for women with heavy menstrual bleeding: A systematic review. European journal of obstetrics, gynecology, and reproductive biology. 2017;211:156-63. Aarts JWM, Thompson R, Alam SS, Dannenberg M, Elwyn G, Foster TC. Encounter decision aids to facilitate shared decision-making with women experiencing heavy menstrual bleeding or symptomatic uterine fibroids: A before-after study. Patient Education and Counseling. 2021;104(9):2259-65. Elwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: a model for patient care. Patient Educ Couns. 2014;97(2):158-64. Swenson SL, Buell S, Zettler P, White M, Ruston DC, Lo B. Patient-centered communication: do patients really prefer it? J Gen Intern Med. 2004;19(11):1069-79. OECD Directorate for Science, Technology and Innovation 2014 [Available from: https://www.oecd.org/sti/inno/What-is-impact-assessment-OECDImpact.pdf. Elwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: a model for patient care. Patient education and counseling. 2014;97(2):158-64. Entwistle VA, Watt IS. Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient education and counseling. 2006;63(3):268-78. Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health. 2019;11(4):589-97. Software V. MAXQDA 2022 Berlin, Germany: VERBI Software; 2021. Chapple A. Menorrhagia: women's perceptions of this condition and its treatment. J Adv Nurs. 1999;29(6):1500-6. van den Brink MJ, Beelen P, Herman MC, Claassen NJJ, Bongers MY, Geomini PM, et al. Women's preferences for the levonorgestrel intrauterine system versus endometrial ablation for heavy menstrual bleeding. European journal of obstetrics, gynecology, and reproductive biology. 2018;228:143-7. Vuorma S, Rissanen P, Aalto AM, Kujansuu E, Hurskainen R, Teperi J. Factors predicting choice of treatment for menorrhagia in gynaecology outpatient clinics. Soc Sci Med. 2003;56(8):1653-60. Vuorma S, Teperi J, Hurskainen R, Aalto AM, Rissanen P, Kujansuu E. Correlates of women's preferences for treatment of heavy menstrual bleeding. Patient Educ Couns. 2003;49(2):125-32. Eising HP, Sanders YV, de Meris J, Leebeek FWG, Meijer K. Women prefer proactive support from providers for treatment of heavy menstrual bleeding: A qualitative study in adult women with moderate or severe Von Willebrand disease. Haemophilia : the official journal of the World Federation of Hemophilia. 2018;24(6):950-6. Robinson OC. Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide. Qualitative Research in Psychology. 2014;11(1):25-41. Additional Declarations No competing interests reported. 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Oderkerk","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA4ElEQVRIiWNgGAWjYFCDAwzMQDJBDsIrwK2QB12LMYRnQIKWxAZCWuzZTyd+rqhhkOM73vvY4OOetPS10w4/YC7AZwtP7mbJM8cYjCXPHDdOnPEsJ3fb7TQD5hl4HZa7QbKBjSFxw4005sM8ByqAWnIYmHnwaeF/u/lnwz+glvvPmA//OVCRbkZQi0TuNsnGNpAtbMzJDAdyEghrufF2m2VjnwTQL2nMhj0H0gxBfjmMTwt7f+7mmw3fbIAhdoxZ4seBZHmz28kPH/NU4NYCBRKo3AMENYyCUTAKRsEowAsA3gVQiiEw/nUAAAAASUVORK5CYII=","orcid":"","institution":"Máxima Medical Center","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"T.J.","middleName":"","lastName":"Oderkerk","suffix":""},{"id":302084312,"identity":"f170f445-3763-44dc-9014-233c793218ff","order_by":1,"name":"R.G. Singotani","email":"","orcid":"","institution":"VU University Amsterdam","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"R.G.","middleName":"","lastName":"Singotani","suffix":""},{"id":302084313,"identity":"8f52ef34-83dd-46cf-8cc6-960e72342d66","order_by":2,"name":"L. Zuidema","email":"","orcid":"","institution":"Máxima Medical Center","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"L.","middleName":"","lastName":"Zuidema","suffix":""},{"id":302084314,"identity":"a3e5f2ac-87f8-4d23-9a32-bf931e4a3207","order_by":3,"name":"E.J.E. Hijden","email":"","orcid":"","institution":"VU University Amsterdam","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"E.J.E.","middleName":"","lastName":"Hijden","suffix":""},{"id":302084316,"identity":"d92b4e0e-bf02-4d17-9bf8-b18401ef8774","order_by":4,"name":"P.M.A.J. Geomini","email":"","orcid":"","institution":"Máxima Medical Center","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"P.M.A.J.","middleName":"","lastName":"Geomini","suffix":""},{"id":302084317,"identity":"8b2eb7ab-2cde-4063-8c2d-7ff68042b221","order_by":5,"name":"M.Y. Bongers","email":"","orcid":"","institution":"Máxima Medical Center","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"M.Y.","middleName":"","lastName":"Bongers","suffix":""},{"id":302084319,"identity":"65b3bc48-9b9a-4480-984b-cc37593b0762","order_by":6,"name":"M.H. Donker","email":"","orcid":"","institution":"VU University Amsterdam","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"M.H.","middleName":"","lastName":"Donker","suffix":""}],"badges":[],"createdAt":"2024-05-07 09:02:21","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4381693/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4381693/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12905-024-03268-9","type":"published","date":"2024-08-02T15:58:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":61794709,"identity":"243380fa-d5d4-4b6b-978a-5a180eede83e","added_by":"auto","created_at":"2024-08-05 16:18:50","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":747395,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4381693/v1/25944b03-363d-475f-9cad-b61e33c64ef7.pdf"},{"id":56450702,"identity":"b0d033b9-32d9-4f3d-9fb5-3520476d9434","added_by":"auto","created_at":"2024-05-14 10:33:17","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":429328,"visible":true,"origin":"","legend":"","description":"","filename":"ISSMCOREQChecklist.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4381693/v1/fd712ae602b4a401badbe0bf.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Patients’ motives and considerations on treatment decision-making for heavy menstrual bleeding: a qualitative study","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eHeavy menstrual bleeding (HMB) has had many definitions over time, but now is defined as experiencing excessive menstrual bleeding that interferes with women\u0026rsquo;s physical, emotional, social and material quality of life. HMB affects roughly 30% of European women in reproductive age (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Among women with HMB, only one in two seeks consultation from a physician, of which 70% receive treatment (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Most reported reason to refrain from seeking help is unawareness of the disease and its treatment options (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). HMB is also perceived as embarrassing due to social stigmas associated with menstruation and beliefs left over from their mothers (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). There are several treatment options available for the treatment of HMB. Usually, the first step in treating HMB is a medical treatment such as the combined oral contraceptive (COC) or inserting progesterone via an intra-uterine system. The levonorgestrel releasing intra-uterine device (LNG-IUD) is a hormonal contraception and is proven as an effective treatment for HMB as it induces atrophy of the endometrial tissue (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Endometrial ablation/resection (EA) is a good alternative for women with no further child wish. This treatment aims to stop endometrial growth by ablating the endometrial tissue and superficial myometrium (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). A hysterectomy is usually offered as the most effective option; however, it is a major and definitive procedure to treat HMB.\u003c/p\u003e \u003cp\u003eGiven the various treatment options for HMB, with each treatment having its own risks and benefits, women may be overwhelmed by so many options (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Therefore, it is important to counsel women about the different treatment options, taking the patients preferences into account. A (shared) decision-making process involves sharing and discussing the best available evidence with patients and support them to weigh options, to enable informed decisions (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Patient-centered communication can help to discover and intergrade patients' wishes, feelings, illness beliefs, concerns, expectations, and preferences during consultation (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePreviously published studies, summarized in the review of Zandstra et al (2017), specifically examined women\u0026rsquo;s preferences on the kind of (shared) decision-making. They concluded that information packages did not influence treatment choice, however structured interviews and computerized decision aids, which were integrated with patient preferences, were beneficial for treatment choice, reducing disagreement, and increasing patient satisfaction (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). However, the reviewed studies did not elaborate on the specific motives and experiences in the decision-making process that led to the decision for a treatment choice. Therefore, we performed this interpretative qualitative study to gain insights in the experienced impact of HMB and the motives and considerations of women during the decision-making process regarding treatment options for HMB.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy aim and design\u003c/h2\u003e \u003cp\u003eTo gain insights in the experienced impact of HMB and the motives and considerations of women during decision-making for different treatment options for HMB, an interpretative qualitative study was performed, using in-depth interviews.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eParticipants were recruited using purposive sampling through the Netherlands Patient Federation (NPF) and M\u0026aacute;xima Medical Centre (MMC). A specific questionnaire was developed to recruit NPF panel members. Participants recruited through the MMC received an information leaflet. All women that showed interest in the study, participated in an interview. Initially, only women experiencing HMB and treated with an LNG-IUD or EA were included. Criteria were broadened after five interviews, including women treated with oral (hormonal) medication and hysterectomy as well. Women who never consulted a physician for treatment of HMB were excluded. Participants were recruited until saturation was reached.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eSemi structured, in-depth interviews were conducted between February 2020 and March 2021 and lasted approximately 30 to 90 minutes. The majority of interviews were held during the COVID-19 pandemic and were carried out online or by phone. All interviews were conducted by two female researchers (RGS and TJO). RGS was a researcher at Talma institute with a background of qualitative research; TJO is a researcher and medical docter who was presents at all interviews for medical questions. Both researchers were introduced at the beginning of the interview. Fieldnotes were made during the interview. A topic list was used as a guide during the interviews. The topic list was developed based on the definition for impact by the Organization for Economic Cooperation and Development (OECD) and inspired by two models for treatment decision-making (\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Questions were developed to reconstruct patient journeys and gain insights on the motives and considerations of participants during the decision-making process regarding treatment options. Topics that were discussed included: symptoms and impact, treatment options and choice, communication and information and efforts and contributions in decision-making. The topic list included questions such as \u0026ldquo;What was the most important goal you wanted to achieve when visiting the gynecologist?\u0026rdquo;. The process of data collection and analysis was iterative, as the process alternated during the research. After five interviews, experiences varied and data saturation was not reached. Therefore, more interviews were conducted. Additionally, an option grid explaining advantages and disadvantages of the various treatment options was added to the topic guide to discuss treatment options for HMB.\u003c/p\u003e \u003cp\u003eAll interviews were audiotaped and transcribed verbatim. Data was collected until no new themes emerged.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eA thematic content analysis was conducted using the revised six steps of thematic analysis as described by Braun \u0026amp; Clarke (2019)(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). In the first phase, the researchers (TJO and RGS) familiarized themselves with the data by re-reading the transcripts. In the second phase, TJO and RGS independently fragmented and coded the transcripts inductively. The researchers familiarised themselves with the data set by reading and re-reading. They coded the first interviews independently and generated an initial list of codes. Memos about contradictions or additional questions were added. The initial list of codes and memos was discussed and if necessary, some alterations were made. In the third phase, the codes were sorted into initial themes. Patterns among the codes were identified by constant comparison. The themes were visually represented in a thematic map. In the fourth phase, the themes were reviewed, discussed and revised with two other researchers (MD and LZ). In the fifth phase, the themes were refined and used as a framework for the remaining interviews. If new patterns and themes emerged, these were added to the existing map. MAXQDA version 2021 (VERBI Software 2021) was used to organize all data (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). In the last phase, narratives were written up together with data extracts, and contextualized using literature.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eRigor\u003c/h2\u003e \u003cp\u003eTo enhance credibility, we sent a summary as member check of the interview to participants. Participants agreed and made no changes or suggestions. The topic list was discussed by two researchers after each interview to ensure dependability. A thick description is provided to describe the context of each participant (see Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eLastly, to ensure confirmability, three (TJO, RGS, LZ) researchers developed themes based on the interviews. These were confirmed by MHD (peer debriefing).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eEthical considerations\u003c/h2\u003e \u003cp\u003e The study protocol was approved by the Medical Ethics Review Committee of M\u0026aacute;xima MC. Study procedures followed were in accordance with the Declaration of Helsinki. The study aim was explained to participants prior to the interview. Informed consent of all participants was obtained. Confidentiality was assured, using restricted access to the data and deidentification of the transcripts. Interview data was stored on a secured online Research Drive.\u003c/p\u003e \u003c/div\u003e"},{"header":"RESULTS","content":"\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003ePatient characteristics\u003c/h2\u003e \u003cp\u003eFourteen participants, aged 30\u0026ndash;59, were interviewed. Most participants experienced symptoms of HMB for more than five years. Additionally, participants received different treatments for their symptoms. Most participants were treated with LNG-IUD or COC, and few with an EA or hysterectomy. See Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for a complete overview of the general characteristics of the participants.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eBaseline characteristics of the participants (n\u0026thinsp;=\u0026thinsp;14)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge group (years)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNationality\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHighest level of education\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eDuration of symptoms (years)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSymptoms reported\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eReceived treatment(s)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40\u0026ndash;44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHungarian/\u003c/p\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Fatigue\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eLNG-IUD\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e55\u0026ndash;59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, LNG-IUD, EA\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e50\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Met\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, EA, OT\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e45\u0026ndash;49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Dys\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, LNG-IUD, EA\u0026thinsp;+\u0026thinsp;LNG-IUD\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e55\u0026ndash;59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHPE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, LNG-IUD\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e50\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHPE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Dys\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, LNG-IUD, OT\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e45\u0026ndash;49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTurkish\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSVE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, PMS, Dys, Fatigue\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, LNG-IUD\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e55\u0026ndash;59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e10\u0026ndash;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Met, Dys, PMS\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35\u0026ndash;39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSVE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, PMS\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eOT\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e30\u0026ndash;34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSVE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Met, PMS\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, OT\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e50\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e10\u0026ndash;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB, Fatigue\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e50\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e50\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUniversity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, LNG-IUD, OT, HE\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40\u0026ndash;44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDutch\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHPE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHMB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOC, OT, HE\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003eLNG-IUD\u0026thinsp;=\u0026thinsp;Levonorgestrel releasing intra-uterine device, COC\u0026thinsp;=\u0026thinsp;Combined Oral Contraceptive, EA\u0026thinsp;=\u0026thinsp;Endometrial ablation, HE\u0026thinsp;=\u0026thinsp;Hysterectomy, OT\u0026thinsp;=\u0026thinsp;Other treatments such as (contraceptive injection, Implanon, Hormone therapy, NuvaRing, Tranexamic acid), HMB\u0026thinsp;=\u0026thinsp;Heavy Menstrual Bleeding, Dys\u0026thinsp;=\u0026thinsp;dysmenorrhea, PMS\u0026thinsp;=\u0026thinsp;pre-menstrual syndrome, Met\u0026thinsp;=\u0026thinsp;Metrorrhagia, NA\u0026thinsp;=\u0026thinsp;No Available data, HPE\u0026thinsp;=\u0026thinsp;Higher professional education, SVE\u0026thinsp;=\u0026thinsp;senior Secondary Vocational Education\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eBased on the analysis of the interviews, three main themes and fourteen subthemes emerged.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e\u003cb\u003eTheme 1: Considerations in taking the first step to seek help\u003c/b\u003e\u003c/h2\u003e \u003cp\u003eDespite the impact of severity of bleeding on their daily life, participants often find it difficult to seek help for HMB. Some participants explained they hoped for a natural solution, like menopause, and most participants prefer not to be treated with hormones.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003e1.1 Impact on daily life and coping strategies\u003c/h2\u003e \u003cp\u003eParticipants described their menstruation as heavy, illustrating this by examples of the amount, unexpectedness or duration of blood loss, and the impact on their daily lives.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Sometimes I was bleeding for 6\u0026ndash;7 weeks in a row and then I wasn\u0026rsquo;t for 3 months, and then I was again for a day. I could not make any sense of it\u0026rdquo; (Participant 3)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eParticipants mentioned that staining and leaking from HMB had major impact on their daily lives. Several participants explained how heavy bleeding at night impacted their sleep, as they had to wake up every few hours to change menstrual products. Moreover, some participants explained how HMB made them feel \u0026lsquo;dirty\u0026rsquo;, or \u0026lsquo;unfresh\u0026rsquo;.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Judo is a full contact sport, and if you don\u0026rsquo;t feel fresh, it is very difficult to be close to others. So that really bothered me for a very long time\u0026rdquo; (Participant 14)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eAdequate coping strategies to deal with HMB were found by the participants. For example, participants used different menstrual products simultaneously, such as a tampon and a sanitary pad. Others explained the need to bring an extra pair of clothes to work or when traveling outside.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I\u0026rsquo;ve had to uh, uh, change pads and tampons every hour, so- And then uh, I always had extra clothes with me. So, so um, I just couldn\u0026rsquo;t do anything. I couldn\u0026rsquo;t leave {the house}, so to speak. I couldn\u0026rsquo;t even work anymore. Yes, I was there, but um, with an eh, with a pack of sanitary pads and tampons in front of me.\u0026rdquo; (Participant 13)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eFor several participants, the major impact of HMB on their daily life motivated them to seek medical help. Often participants described a change in complaints or a personal limit that was reached, leading them to visit their GP for help.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Even at night I had a tampon in and I had a sanitary napkin in and even then, my whole bed was destroyed. I just had to get new mattresses, because you just leak through. And then you're like now something has to be done.\u0026rdquo; (Participant 2)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e1.2 Seeking help is hindered by embarrassment\u003c/h2\u003e \u003cp\u003eFew participants found it embarrassing to go to the GP to talk about their menstrual complaints and expose their bodies. They found it very unpleasant to undergo vaginal examinations, especially when they are menstruating. This is a reason for participants to delay seeking help.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;But I always think that it is the most um, well I really go to a doctor a lot, but um, this kind of appointments, I find, I find it embarrassing. I don't know. It makes me feel uncomfortable as a woman.\u0026rdquo; (Participant 8)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003e1.3 Resistance towards hormones plays a crucial role\u003c/h2\u003e \u003cp\u003eSeveral participants expressed that hormone treatments contributed to their rejection or withdrawal from treatment. Many participants indicated that hormones caused side effects, such as mental health issues (mood swings and depression). Participants also expressed that hormonal treatments do not always reduce blood loss and premenstrual symptoms. Furthermore, many participants mentioned that taking hormones does not feel natural.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\"Nausea, vomiting, headaches. Yes, headache and- Look, swollen breasts and belly you always have. But it was like when I took the pill that it got much worse.\u0026rdquo; (Participant 7)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003e1.4 Menopause as a solution\u003c/h2\u003e \u003cp\u003eOther participants hoped for the menopause as a natural solution. Many participants dealt with the symptoms for many years, so waiting for menopause was also considered as an alternative to the other non-invasive or surgical treatments. Some participants said that they would take the final years of blood loss for granted until they reach menopause and the bleeding stops.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: Various sources of information can contribute, confuse or frighten decision-making process\u003c/h2\u003e \u003cp\u003eDifferent sources of information contribute to a participant\u0026rsquo;s knowledge of different treatment options and therefore their decision-making. These sources include one\u0026rsquo;s own experience, experience or opinions of others, online information, and information and opinions provided by the physician. Sometimes knowledge also causes fear or uncertainty for a particular treatment or result.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003e2.1 Information provided by physicians\u003c/h2\u003e \u003cp\u003eThe information received by the participants varied enormously. Some participants were well prepared for the risks and benefits of a treatment, while others were completely overwhelmed by post-operative complications or side effects. Specifically, most participants reported that they were not prepared for the abdominal pain after EA.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;\"I was just given a leaflet, and it just says how the treatment works and not what might happen afterwards. Yes, they tell you that you could have less blood loss and that you are going to have that novasure treatment. (...). I just read the leaflet about how or what the treatment itself entails.\u0026rdquo; (Participant 3)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003e2.2 Social environment steers and confuses decision-making process\u003c/h2\u003e \u003cp\u003eIn the interviewee's environment, there were many differing opinions and experiences about the different treatments for HMB. Some participants reported negative experiences from their social environment about certain treatments. These experiences contributed to a patient\u0026rsquo;s decision whether to opt for that specific treatment. In particular, there were many varying stories about side effects of the LNG-IUD, side effects of hormones and pain after EA.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\"No, because I have two friends who had IUDs and they got pregnant with twins. So that didn't work out either. And they weren't yet, they did not have a desire to have children, (...) So you always have to weigh up what you can and can't do and the experiences of others. And that's what you actually do it with.\" (Participant 10)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003e2.3 Motives to acquire information themselves\u003c/h2\u003e \u003cp\u003eAnother source of knowledge can be from self-acquired information. Participants explained to have the need to look up stories and experiences on the Internet. Some information contains negative experiences about treatments gone wrong, but there are also stories about the positive effects of treatments. However, many participants said that they were mainly looking for information on how the treatment would proceed, so that they would be well prepared.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\"Certainly not because not all the stories you read are equally positive. Hey, it's, it's also, there are some horror stories, I might be too down-to-earth for that. Of course, it depends on each person and what is your pain threshold. And what do you think is a lot and what kind of things do you mind? So, you have to filter that. And there were very few positive stories, about how well things are going. So you don't find those either.\u0026rdquo; (Participant 4)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003e2.4 Past experiences influences decision-making\u003c/h2\u003e \u003cp\u003eOne's own previous experience with a particular treatment also plays a major role in the decision-making process. Many participants mentioned a negative experience with, for example, the side effects of hormones, making them reluctant to choose a treatment containing hormones. However, other participants had good experiences with hormones (oral contraceptive pill of the LNG-IUD), which made them feel positive about this treatment and ultimately made the choice of treatment easy.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Only the second time it really backfired. I kept getting my periods, I kept having a lot of trouble with my legs, my back, my breasts, my stomach, those migraine attacks. Nothing helped. So, I had the Mirena [LNG-IUD] removed.\u0026rdquo; (Participant 7)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003e2.5 Some sources of information increases fear for worsening\u003c/h2\u003e \u003cp\u003eSome participants considered treatment as a solution to their complaints, while other participants saw the treatment as an obstacle. Participants mentioned fear of complications as a consideration to reject a specific treatment. For example, participant five mentioned the following regarding EA:\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eYes, because with me it was the fear that it was going to stick together [adhesions] I am afraid then you don\u0026rsquo;t have insights into it. That was not an option for me, also.\u0026rdquo; (Participant 5)\u003c/em\u003e\u003c/p\u003e \u003cp\u003eFurthermore, all participants suffered from the symptoms of HMB and wished for improvements in their quality of life. Some participants were afraid of worsening of the symptoms or the possibility that the treatment would not relief their symptoms.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI mean, if you go for a treatment, then, of course you want your problem to be solved in the end, but also you don't want a new problem to arise. Or another problem or, or the same problem in, in- Yes, that, you don't want that. You want your problem to be solved in the end.\u0026rdquo; (Participant 9)\u003c/em\u003e\u003c/p\u003e \u003cp\u003eThe potential effects of the treatment on their daily life were also a consideration. For example, abdominal pain after an EA and not being able to continue with daily activities were considered as disadvantages of EA. Other participants did not prefer a hysterectomy. This treatment was seen as invasive and painful, and it required longer recovery time.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Um, well the pain um, I was um, very afraid of it anyway. And I had heard stories about other people who had been in a lot of pain. So I was, I thought, very exciting. And the period afterwards of eh, I'm quite a busy bee. And then the six weeks of doing nothing and, eh, in principle not being allowed to lift a carton of milk, I really dreaded that.\u0026rdquo; (Participant 14)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe participants who had a hysterectomy expressed that taking a short break from daily activities due to the surgical procedure was as a slight setback.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eUm, so those advantages did far outweigh the disadvantages for me. The disadvantages are that you just have a long recovery, it's quite an operation and I was a bit worried about that. But um, it's also been a tough journey in the end, because it was a tough ok, but um, yes, it's the best decision I could have made, I think.\u0026rdquo; (Participant 13)\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: A physician\u0026rsquo;s support and understanding is needed to guide the decision-making process\u003c/h2\u003e \u003cp\u003eFor the patient's final choice of treatment, the decision moment together with the physician is very important. A physician's attitude is very important to the patient in this situation. It is important that the physician listens to the patient expectation of a treatment.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003e3.1 The importance of the feeling of being heard\u003c/h2\u003e \u003cp\u003e Participants emphasized the importance of the relationship with their treating physician in their decision-making. To them, being heard and taken seriously during consultation was important for their appraisal of the relationship.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;When the internist took me seriously about the anemia, that really made me feel supported\u0026rdquo; (Participant 12)\u003c/em\u003e \u003c/p\u003e \u003cp\u003e Although some participants were appreciative of the relationship, others did not feel heard by their physician. Some participants mentioned that the physician did not notice their symptoms of HMB at first. Others mentioned that their physician did not take their pain seriously, which made some participants feel like their complaints were \u0026ldquo;trivial\u0026rdquo;. All these factors led to a feeling of not being heard by a physician.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Well, I think I had a really bad stomachache 7 to 14 days {after treatment}. And if you indicate that and they {physician} say: 'yes, that's part of it'. Then I think: this is not part of it, I believe I took ibuprofen 600mg and then three to four a day. Then I think: I don't think this is normal. There was something wrong with that. Well, that was not picked up. I regret that.\u0026rdquo; (Participant 2)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003e3.2 Expressing one\u0026rsquo;s own choice is important\u003c/h2\u003e \u003cp\u003e Participants mentioned the importance of expressing one's own treatment preference. They expressed that an open relationship with their physician made it easier to express their wishes. Participants expressed that they appreciated being given the time to consider different treatments and make a shared decision. In contrast, in a relationship in which a physician is very directive, little space is left for a patient\u0026rsquo;s own choice.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Well, I actually wanted to go for Novasure {endometrial ablation} then, but then they thought I was too young for that. Then I was about forty and then they thought I was too young for that, while, I knew myself that I had no desire to have children, eh, I had no partner at that time\u0026rdquo; (Participant 11)\u003c/em\u003e \u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003e3.3 Prevailing opinion of the physician\u003c/h2\u003e \u003cp\u003e The participants often expressed that the treating physician strongly suggested which treatment the participant should undergo. Consequently, not all treatment options were presented to the patient. In particular, the option to perform a hysterectomy was often not discussed or was very quickly discarded for various reasons.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\"Yes, too young and all that, and we can always try other treatments. I say, yes other treatments, I don't see the point. If someone suffers so much, and not just for a moment but for a number of years. I don't want to have children, never have and never will. And it's the patient's wish, \"Oh, I don't mind having my uterus removed. I don't see the point in it not being allowed or being possible. Because then I think, as a patient, I am actually being hindered in my choice, because they have already made a choice for me not to do it. While they do mention it as an option to be able to do it, ultimately\u0026rdquo;. (participant 3)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec26\" class=\"Section3\"\u003e \u003ch2\u003e3.4 Trusting the physician matters\u003c/h2\u003e \u003cp\u003eParticipants also mentioned that trust in the relationship with the physician is key. Some participants fully trusted their physicians and let them decide.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;No, I didn\u0026rsquo;t have eh, no I didn\u0026rsquo;t have myself oh, I think, if I go to the gynecologist, he must know what is best\u0026rdquo; (Participant 10)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eNevertheless, other participants mentioned distrusting their physician or their competence. Some reasons to distrust a physician were: inattentive to symptoms, rumors about certain physicians or a general practitioner (GP) refusing to refer a patient to a gynecologist. For some participants, this resulted in avoiding appointments with their physician.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Only I think she missed him {the myoma} the first time, because she did say, yes, I can see something, but then I have to get the other ultrasound machine and well. She didn\u0026rsquo;t then.\u0026rdquo; (Participant 12)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec27\" class=\"Section3\"\u003e \u003ch2\u003e3.5 Expectations for treatment steers the decision\u003c/h2\u003e \u003cp\u003eWhen asking their initial preferences for treatment, some participants indicated they preferred the least invasive treatment such as hormonal contraception. Other participants preferred simple treatments like LNG-IUD. One participant mentioned preferring an LNG-IUD opposed to the COC, since it does not require taking a pill every day. In contrast, some participants considered hormonal contraception (taking a pill daily) as a simple treatment.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eAnd I'm always used to discussing with my doctor um, about well the, what options I have and um, um, you're not going to do the most drastic thing. So, I did have my mother as an example who eh, eh, lost her eh, uterus around her forties eh, because of those heavy periods. So, you discuss that then, but that's a, quite a procedure. So eh, I thought eh, I'll first go for an eh, option that eh, was less eh, invasive. And um, the pill was then a very obvious option.\u0026rdquo; (Participant 8)\u003c/em\u003e\u003c/p\u003e \u003cp\u003eThe majority of the participants suffered from HMB for several years and desired a mild or regular menstruation, or no menstruation at all. The participants emphasized that the burden of their complaints affected their daily life. Expected effects of treatment such as a decrease in blood loss and more control over their own life were mentioned as considerations for treatment.\u003c/p\u003e \u003cp\u003eMany participants preferred a hysterectomy and considered it as a definitive solution. Participants mentioned \u0026lsquo;getting rid of all the symptoms\u0026rsquo; or no more blood loss as advantages of a hysterectomy. Some of the participants had no desire to have more children and considered the uterus as unnecessary. One participant mentioned that if premenstrual symptoms would decrease as a result of a hysterectomy, she would prefer a hysterectomy.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eComing from me, I would have said: take out the whole uterus and be done with it. I would have said the same thing 10 years ago, gee, I don't mind if it's taken out. \u0026ldquo;(Participant 3)\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThe aim of this study was to gain insights in the experienced impact of HMB and the motives and considerations of women during the decision-making process regarding treatment options for HMB. The three main themes that emerged are \u0026ldquo;Considerations in taking the first step to seek help\u0026rdquo; (Theme 1), \u0026ldquo;Various sources of information can contribute, confuse or frighten decision-making process\u0026rdquo; (Theme 2) and \u0026ldquo;A physician\u0026rsquo;s support and understanding is needed to guide the decision-making process\u0026rdquo; (Theme 3).\u003c/p\u003e \u003cp\u003eThe burden of HMB on daily life were an important reason to seek for help, but differed enormously between the participants. This is in agreement with Chapple et al. (1999) who found that symptoms which \u0026ldquo;started to disrupt their lives\u0026rsquo; were commonly the trigger to seek medical help and differ between women\u0026rdquo;(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). This seeking of help is a stepping stone, first the menstrual bleeding needs to be perceived as \u0026lsquo;abnormal\u0026rsquo; and then to decide whether seeking medical help is legitimate. The interviews revealed some participants had a negative connotation towards hormone-containing treatment, mainly due to the perception of administered hormones not being natural. The study of den Brink et al. confirms this finding, as further explained below(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eWomen's knowledge about the treatments comes from a variety of sources, such as the Internet, their own experiences, those of others, and the opinions of their physicians. The opinions and experiences of people in the social environment contribute a great deal to the choice of treatment. In the study of Vuorma et al., proximally one in three women (17\u0026ndash;34%) felt like they were not sufficiently informed by the physicians on the benefits and complications of the different treatment options for HMB. Preferences regarding treatment were most strongly associated with women's pre-visit preferences (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Many participants considered treatment for HMB as an obstacle, as they fear side effects, complications and disruption of daily life. Participants were also afraid that treatment would worsen their symptoms. Therefore, many participants favored the least invasive and least risky treatment. This finding is also in line with the results of van den Brink et al. (2018) (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). They studied women\u0026rsquo;s preferences for treatment of HMB and concluded that the presence of hormones, the (ire)reversibility of the treatment and the effect on irregular bleeding were important in making a decision regarding treatment options (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). In our study, participants mentioned the presence of hormones as a reason for not choosing a specific treatment. Nevertheless, the study of Brink et al. does not elaborate on the specific motivations of women during the decision-making process.\u003c/p\u003e \u003cp\u003eThe experienced relationship with a physician played a major role in the participant\u0026rsquo;s treatment decision-making. Participants expressed that the feeling of being heard, trust in the physician and being able to express one\u0026rsquo;s own choice were important in the appreciation of the relationship. Experiences of participants varied, some valued the relationship with their physician, while others felt distrust towards their physician. The opinion of physicians seems to dominate the decision-making process. Eising et al. (2018) explored key factors for successful support in patients with Von Willebrand disease, faced with HMB (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Their research found that a precondition for support is a good relationship with a physician: a trusting relationship, where information can be shared. The findings in this study are in line with findings from Eising et al. (2018). According to the research of Skea (2004), 75% of the women who underwent a hysterectomy for HMB preferred to make the decision together with their physician. Four percent of the women preferred the physician to make the decision, and 2% wanted to make their own decision (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe participant\u0026rsquo;s desired outcome of the treatment varies from still have a mild menstruation by undergoing a simple treatment and to a definitive solution by an invasive treatment like a hysterectomy. The participants had different expectations towards the treatment such as expected invasiveness of the treatment or effectiveness of the treatment. Expectations like these steered the final treatment decision. Kennedy et al. conducted a randomized controlled trial to evaluate the effect of structured preference elicitation interviews during the decision-making process for treatment of HMB (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). The first group received a video explaining the different treatment options, while the second group also met with a research nurse. Concluding, women who got the chance to elaborate their preferences, less often underwent hysterectomy after two years of follow up. Also, satisfaction rates were higher and health care costs were lower in the group of women who were seen by the research nurse. This is consisting with the results of our article. This highlights the importance of understanding woman's motivations and considerations when deciding on a treatment.\u003c/p\u003e \u003cp\u003eA helpful tool to counsel the advantages and disadvantages of the various treatment options in the consulting room is the use of an option grid, commonly used in the Netherlands. This card briefly explains the success rates of the various HMB treatments as mentioned above, as well as the benefits and harms.\u003c/p\u003e \u003cdiv id=\"Sec29\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003eA strength of this study is that by using in-dept interview methods we were able to foster a safe environment to gain the participants\u0026rsquo; trust to share their experiences. Another strength of this study is that we interviewed women who had experienced HMB over a variety of years and were therefore at varying stages of the disease with a variety of treatment experiences. We aimed to ensure transferability by providing thick description of each participant. We used impact in the topic list which gave us many empathetic insights from the participants. Additionally, the topic list was discussed by two researchers after each interview and adapted after five interviews, thereby ensuring dependability. Finally, participants received a summary of the results, as form of a member check.\u003c/p\u003e \u003cp\u003eOur study was limited to the experiences and considerations of women who received treatment of HMB. Experiences of women who have never sought medical consultation or consulted a physician but refrained from treatment were not included. Since we recruited respondents through questionnaires and flyers, it is possible that self-selection bias occurred. (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) It is possible that we only interviewed participants who were comfortable with sharing their stories, leading to a bias in the data. It is also possible that the panel members who participated in this study were more assertive and aware than the average patient. Amongst the participants, there is diversity in terms of age, education level, years of experience with HMB and type of treatment. Unfortunately, there is little variation in nationality. As a result, topics such as culture and religion and whether these factors play a role in considerations for treatments are not included. The data was retrospectively collected, which may have increased the possibility of recall bias. Women who consulted a physician five years prior to the interview were eligible for our study. Recall bias was minimized by recruiting women through the patient clinic of MMC who were in the midst of their treatment. Motives and considerations regarding the received treatment may be influenced by the effectiveness of the received treatment, the moment in the patient journey and previous experiences of treatments for HMB.\u003c/p\u003e \u003cp\u003e \u003cb\u003eRecommendations\u003c/b\u003e Our results suggest that a patient\u0026rsquo;s treatment decision is influenced by the attitude and communication of their physician. The findings of this study allow for the formulation of a few recommendations. Most significantly, it is critical to foster an environment of open communication during consultations so that the patient feels at ease with the physician. Patient-centered communication is a helpful communication tool to use during consultation (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). It acknowledges the entire person, their personality, life history, and social structure in order to develop a shared understanding of the problem, treatment goals, and barriers to those goals. This allows us to gain an understanding of the motivations for a certain belief, experience, or knowledge from the perspective of women. It is also important to consider that shame and discomfort may play a role in the decision to consult a physician.\u003c/p\u003e \u003cp\u003eParticipants of this study particularly valued being informed about all possible treatments for HMB, including the advantages and disadvantages of each treatment. The option grid is a helpful tool to use during the decision-making process.\u003c/p\u003e \u003cp\u003eIn future research, we recommend a prospective study with a long follow-up following women from the onset of their patient journey to investigate all possible factors influencing treatment decisions.\u003c/p\u003e \u003c/div\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eThis study provides insights into patients\u0026rsquo; motives and considerations during decision-making for treatments of HMB, but also in the long and confusing journey some participants experienced. The first obstacle to overcome for women with HMB is to decide that help is needed (again). Main considerations in the decision-making process include obtained information and experience, relationship with the physician, influence of the social environment, pre-visit expectations/ desires, fear of treatment complications and uncertainty of treatment effect. It is the role of the physician to create a trusting and open atmosphere during consultation. Patient-centered communication is helpful to share knowledge, and gain insight into a patients\u0026rsquo; hopes, fears and worries. Additionally, it is essential to offer the patient comprehensive information to support informed decision-making.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eHMB = heavy menstrual bleeding\u003c/p\u003e\n\u003cp\u003eLNG-IUD = levonorgestrel-releasing intra-uterine device\u003c/p\u003e\n\u003cp\u003eEA = endometrial ablation\u003c/p\u003e\n\u003cp\u003eNPF =\u0026nbsp;Netherlands Patient Federation (Dutch patient federation)\u003c/p\u003e\n\u003cp\u003eCOC = combined oral contraceptive\u0026nbsp;\u003c/p\u003e\n"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study protocol was approved by the Medical Ethics Review Committee of M\u0026aacute;xima MC corresponding number N20.025 / L20.027.\u0026nbsp;The study aim was explained to participants prior to the interview.\u0026nbsp;Informed consent of all\u0026nbsp;participants was obtained. Study procedures followed were in\u0026nbsp;accordance with the Declaration of Helsinki.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo funding\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eContributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors took part in designing the study. TJO and RGS conducted the interviews and transcribed the audio recordings to text. TJO and RGS performed the initial analysis and identified and organized the meaning units into codes and preliminary groups of themes. TJO, RGS, LZ and MHD participated in developing a final structure for the themes and subthemes. TJO, RGS and LZ made a first draft of the article. TJO and LZ finalized the manuscript in cooperation with PMAJG, EJEH, MYB and MHD. All authors read and approved the final manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe researchers thank all the participating women in this study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCorresponding author\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCorrespondence to Tamara Johanna Oderkerk and Lisa Zuidema\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003ePractice bulletin no. 128: diagnosis of abnormal uterine bleeding in reproductive-aged women. Obstetrics and gynecology. 2012;120(1):197-206.\u003c/li\u003e\n\u003cli\u003eFraser IS, Mansour D, Breymann C, Hoffman C, Mezzacasa A, Petraglia F. Prevalence of heavy menstrual bleeding and experiences of affected women in a European patient survey. International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics. 2015;128(3):196-200.\u003c/li\u003e\n\u003cli\u003eKamaludin SAN, Zhang XR, Shorey S. Perspectives of women experiencing Menorrhagia: A descriptive qualitative study. J Clin Nurs. 2019;28(13-14):2659-68.\u003c/li\u003e\n\u003cli\u003eLethaby A, Hussain M, Rishworth JR, Rees MC. Progesterone or progestogen-releasing intrauterine systems for heavy menstrual bleeding. The Cochrane database of systematic reviews. 2015(4):Cd002126.\u003c/li\u003e\n\u003cli\u003eBeelen P, van den Brink MJ, Herman MC, Geomini P, Dekker JH, Duijnhoven RG, et al. Levonorgestrel-releasing intrauterine system versus endometrial ablation for heavy menstrual bleeding. American journal of obstetrics and gynecology. 2021;224(2):187.e1-.e10.\u003c/li\u003e\n\u003cli\u003eMunro MG. Endometrial ablation. Best practice \u0026amp; research Clinical obstetrics \u0026amp; gynaecology. 2018;46:120-39.\u003c/li\u003e\n\u003cli\u003eZandstra D, Busser JAS, Aarts JWM, Nieboer TE. Interventions to support shared decision-making for women with heavy menstrual bleeding: A systematic review. European journal of obstetrics, gynecology, and reproductive biology. 2017;211:156-63.\u003c/li\u003e\n\u003cli\u003eAarts JWM, Thompson R, Alam SS, Dannenberg M, Elwyn G, Foster TC. Encounter decision aids to facilitate shared decision-making with women experiencing heavy menstrual bleeding or symptomatic uterine fibroids: A before-after study. Patient Education and Counseling. 2021;104(9):2259-65.\u003c/li\u003e\n\u003cli\u003eElwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: a model for patient care. Patient Educ Couns. 2014;97(2):158-64.\u003c/li\u003e\n\u003cli\u003eSwenson SL, Buell S, Zettler P, White M, Ruston DC, Lo B. Patient-centered communication: do patients really prefer it? J Gen Intern Med. 2004;19(11):1069-79.\u003c/li\u003e\n\u003cli\u003eOECD Directorate for Science, Technology and Innovation 2014 [Available from: https://www.oecd.org/sti/inno/What-is-impact-assessment-OECDImpact.pdf.\u003c/li\u003e\n\u003cli\u003eElwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: a model for patient care. Patient education and counseling. 2014;97(2):158-64.\u003c/li\u003e\n\u003cli\u003eEntwistle VA, Watt IS. Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient education and counseling. 2006;63(3):268-78.\u003c/li\u003e\n\u003cli\u003eBraun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health. 2019;11(4):589-97.\u003c/li\u003e\n\u003cli\u003eSoftware V. MAXQDA 2022 Berlin, Germany: VERBI Software; 2021.\u003c/li\u003e\n\u003cli\u003eChapple A. Menorrhagia: women\u0026apos;s perceptions of this condition and its treatment. J Adv Nurs. 1999;29(6):1500-6.\u003c/li\u003e\n\u003cli\u003evan den Brink MJ, Beelen P, Herman MC, Claassen NJJ, Bongers MY, Geomini PM, et al. Women\u0026apos;s preferences for the levonorgestrel intrauterine system versus endometrial ablation for heavy menstrual bleeding. European journal of obstetrics, gynecology, and reproductive biology. 2018;228:143-7.\u003c/li\u003e\n\u003cli\u003eVuorma S, Rissanen P, Aalto AM, Kujansuu E, Hurskainen R, Teperi J. Factors predicting choice of treatment for menorrhagia in gynaecology outpatient clinics. Soc Sci Med. 2003;56(8):1653-60.\u003c/li\u003e\n\u003cli\u003eVuorma S, Teperi J, Hurskainen R, Aalto AM, Rissanen P, Kujansuu E. Correlates of women\u0026apos;s preferences for treatment of heavy menstrual bleeding. Patient Educ Couns. 2003;49(2):125-32.\u003c/li\u003e\n\u003cli\u003eEising HP, Sanders YV, de Meris J, Leebeek FWG, Meijer K. Women prefer proactive support from providers for treatment of heavy menstrual bleeding: A qualitative study in adult women with moderate or severe Von Willebrand disease. Haemophilia : the official journal of the World Federation of Hemophilia. 2018;24(6):950-6.\u003c/li\u003e\n\u003cli\u003eRobinson OC. Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide. Qualitative Research in Psychology. 2014;11(1):25-41.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Heavy Menstrual Bleeding, qualitative study, treatment decision-making","lastPublishedDoi":"10.21203/rs.3.rs-4381693/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4381693/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eSeveral treatment modalities for heavy menstrual bleeding are available. However, many women report being unsatisfied in their search for an appropriate and effective treatment. The aim of this study is to gain insights in the experienced impact of HMB and the motives and considerations of women during the decision-making process for different treatment options for heavy menstrual bleeding.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eAn interpretative qualitative study was performed, using in-depth interviews. In total, 14 semi-structured interviews were conducted with patients who consulted a physician for treatment of heavy menstrual bleeding. Participants were recruited via the Dutch Patient Federation (N\u0026thinsp;=\u0026thinsp;10) or via the outpatient clinic in the M\u0026aacute;xima Medical Centre (N\u0026thinsp;=\u0026thinsp;4). The interviews were conducted by phone or online between February 2020 and March 2021. In the interviews three topics were addressed: 1) participants experience with heavy menstrual bleeding, 2) patient experience with treatment journey and 3) elaborating on alternative treatments for heavy menstrual bleeding. A thematic content analysis was conducted.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFourteen participants aged between 30 and 59 years old were interviewed. Three main themes emerged; \u0026ldquo;Considerations in taking the first step to seek help\u0026rdquo;, \u0026ldquo;Various sources of information can contribute, confuse or frighten decision-making process\u0026rdquo; and \u0026ldquo;A physician\u0026rsquo;s support and understanding is needed to guide the decision-making process\u0026rdquo;.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eOur results show that women's considerations and decision making strongly depend on the obtained information and experience, the relationship with the physician, the influence of the social environment, the pre-visit expectations/ desires, the fear of treatment complications and uncertainty of the effect of the treatment. It\u0026rsquo;s a physicians roll to create a trusting and open atmosphere during consultation. Patient-centered communication is helpful to share knowledge, and gain inside into a patient\u0026rsquo;s hopes, fears and worries.\u003c/p\u003e","manuscriptTitle":"Patients’ motives and considerations on treatment decision-making for heavy menstrual bleeding: a qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-05-14 10:33:12","doi":"10.21203/rs.3.rs-4381693/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2024-05-20T06:41:16+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-05-13T23:40:32+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"251495697445144703657437338765732960789","date":"2024-05-13T04:51:48+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"178202029167636305828554948821913924611","date":"2024-05-08T23:23:25+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-05-08T22:02:36+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2024-05-08T09:04:33+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-05-08T04:47:30+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-05-08T04:47:30+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Women's Health","date":"2024-05-07T08:54:26+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"337a3c24-f98d-46b7-9493-4227f014fc29","owner":[],"postedDate":"May 14th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-08-05T16:17:21+00:00","versionOfRecord":{"articleIdentity":"rs-4381693","link":"https://doi.org/10.1186/s12905-024-03268-9","journal":{"identity":"bmc-womens-health","isVorOnly":false,"title":"BMC Women's Health"},"publishedOn":"2024-08-02 15:58:00","publishedOnDateReadable":"August 2nd, 2024"},"versionCreatedAt":"2024-05-14 10:33:12","video":"","vorDoi":"10.1186/s12905-024-03268-9","vorDoiUrl":"https://doi.org/10.1186/s12905-024-03268-9","workflowStages":[]},"version":"v1","identity":"rs-4381693","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4381693","identity":"rs-4381693","version":["v1"]},"buildId":"zQwnuV7TCBrMSSSToR1PI","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}