{"paper_id":"2cd2f4af-4872-4b3c-b428-506fd841a8ff","body_text":"RESEARCH Open Access\n© The Author(s) 2024. Open Access  This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, \nsharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and \nthe source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this \narticle are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included \nin the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will \nneed to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The \nCreative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available \nin this article, unless otherwise stated in a credit line to the data.\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nhttps://doi.org/10.1186/s12905-024-03268-9\nBMC Women's Health\nT.J. Oderkerk and R.G. Singotani are joined first authorship.\n*Correspondence:\nT. J. Oderkerk\ntamara.oderkerk@mmc.nl\nR. G. Singotani\nrichellesingotani@gmail.com\nFull list of author information is available at the end of the article\nAbstract\nBackground Several treatment modalities for heavy menstrual bleeding are available. However, many women report \nbeing unsatisfied in their search for an appropriate and effective treatment. The aim of this study is to gain insights \nin the experienced impact of heavy menstrual bleeding and the motives and considerations of women during the \ndecision-making process for treating heavy menstrual bleeding.\nMethods An interpretative qualitative study was performed, using in-depth interviews. In total, 14 semi-structured \ninterviews were conducted with patients who consulted a physician for treatment of heavy menstrual bleeding. \nParticipants were recruited via the Netherlands Patients Federation (N = 10) or via the outpatient clinic in the Máxima \nMedical Center (N = 4). The interviews were conducted by phone or online between February 2020 and March \n2021. In the interviews three topics were addressed: (1) participant’s experience with heavy menstrual bleeding, (2) \nexperience with patient journey of treatment decision-making and (3) elaborating on alternative treatments for heavy \nmenstrual bleeding. A thematic analysis was conducted.\nResults Fourteen participants aged between 30 and 59 years old were interviewed. Three main themes emerged; \n“Considerations in taking the (next) step to seek help” , “Various sources of information can contribute, confuse or \nfrighten decision-making process” and “A physician’s understanding and a relationship of trust are needed to guide \nthe decision-making process” .\nConclusion Our results show that women’s considerations and decision making strongly depend on the obtained \ninformation and experience, the relationship with the physician, the influence of the social environment, the pre-\nvisit expectations/desires, the fear of treatment complications and uncertainty of the effect of the treatment. It is a \nphysicians role to create a trusting and open atmosphere during consultation. Patient-centered communication is \nhelpful to share knowledge, and gain insights into a patient’s hopes, fears and worries.\nPatients’ motives and considerations \non treatment decision-making for heavy \nmenstrual bleeding: a qualitative study\nT. J. Oderkerk1,2*, R. G. Singotani3*, L. Zuidema1,2, E. J.E. van der Hijden3, P . M.A.J. Geomini1, M. Y. Bongers1,2 and  \nM. H. Donker4\n\nPage 2 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nBackground\nHeavy menstrual bleeding (HMB) has had many defini -\ntions over time, but is now defined as experiencing exces-\nsive menstrual bleeding that interferes with women’s \nphysical, emotional, social and material quality of life. \nHMB affects roughly 30% of European women in repro -\nductive age [ 1, 2]. Among women with HMB, only one \nin two seeks consultation from a physician, of which 70% \nreceives treatment [2]. The most frequently reported rea-\nson to refrain from seeking help is a lack of awareness \nabout the disease and its treatment options [ 2]. Addi -\ntionally, HMB is often associated with social stigmas and \npersonal beliefs about menstruation, which can affect \nwomen’s decisions to seek treatment [3]. However, there \nare several treatment options available for managing \nHMB. Usually, the first initial step in treating HMB is a \nmedical treatment such as the combined oral contracep -\ntive (COC), tranexamic acid or inserting insertion of pro-\ngesterone via an intra-uterine system. The levonorgestrel \nreleasing intra-uterine device (LNG-IUD) is a hormonal \ncontraception that has been proven effective for treat -\ning HMB as it induces atrophy of the endometrial tissue \n[4, 5]. Endometrial ablation or resection (EA) is a viable \noption for women who do not wish to have children, or \nno longer intend to have children, as pregnancy after \nEA can cause serious obstetric complications [ 6]. This \ntreatment aims to stop endometrial growth by ablating \nthe endometrial tissue and superficial myometrium [ 7]. \nWhile a hysterectomy is typically considered the most \neffective treatment option, it is a major and definitive \nprocedure for treating HMB.\nGiven the various treatment options for HMB, with \neach treatment having its own risks and benefits, women \nmay not be aware of the numerous available options [ 8, \n9]. Therefore, it is crucial to collaborate with women to \nexplore different treatment options, respecting and pri -\noritizing their preferences. A (shared) decision-making \nprocess involves collaboratively exploring the best avail -\nable evidence with patients and supporting them in mak -\ning informed decisions that align with their values [ 10]. \nPatient-centered communication can help to uncover \nand integrate patients’ wishes, feelings, illness beliefs, \nconcerns, expectations, and preferences during consul -\ntation [11]. According to Zandstra et al. (2017) effective \ncounseling and shared decision-making are essential to \nhelp patients navigate their options and make choices \nthat align with their personal values and needs [ 8]. They \nspecifically examined women’s preferences on the kind of \n(shared) decision-making. They concluded that informa -\ntion packages did not influence treatment choice, how -\never structured interviews and computerized decision \naids, which were integrated with patient preferences, \nwere beneficial for treatment choice, reducing disagree -\nment, and increasing patient satisfaction [ 8]. However, \nthe reviewed studies did not elaborate on the specific \nmotives and experiences in the decision-making process \nthat led to the decision for a treatment choice. There -\nfore, we performed this interpretative qualitative study \nto gain insights in the experienced impact of HMB and \nthe motives and considerations of women during the \ndecision-making process regarding treatment options for \nHMB.\nMethods\nStudy aim and design\nTo gain insights in the experienced impact of HMB and \nthe motives and considerations of women during deci -\nsion-making for different treatment options for HMB, an \ninterpretative qualitative study was performed, using in-\ndepth interviews.\nParticipants\nParticipants were recruited using purposive sampling \nthrough the Netherlands Patients Federation (NPF) and \nMáxima Medical Center (MMC). A specific question -\nnaire was developed to recruit members of the NPF. The \nquestionnaire contained information on the study aim \nand questions addressing the inclusion criteria (experi -\nence with HMB; received treatment for HMB in the pre -\nvious five years). Initially, only women experiencing HMB \nand treated with an LNG-IUD or EA were included. \nCriteria were broadened after five interviews, includ -\ning women treated with other treatments such as oral \n(hormonal) medication and hysterectomy. Additional \nparticipants who received any treatment for HMB were \nrecruited via MMC and they received an information \nleaflet. All women that showed interest in the study, par -\nticipated in an interview. Women who never consulted a \nphysician for treatment of HMB were excluded.\nData collection\nSemi-structured, in-depth interviews were conducted \nin Dutch, between February 2020 and March 2021 and \nlasted approximately 30 to 90 min. The majority of inter -\nviews were held during the COVID-19 pandemic and \nwere carried out online or by phone. All interviews were \nconducted by two female researchers (RGS and TJO). \nRGS was a researcher with a background of qualita -\ntive research; TJO is a researcher and medical doctor in \na gynecology department. Fieldnotes were made during \nthe interview. A topic list was used as a guide during the \ninterviews (see Appendix A). The topic list was inspired \nKeywords Heavy menstrual bleeding, Qualitative study, Treatment decision-making\n\nPage 3 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nby two models for treatment decision-making [ 10, 12, \n13]. Questions were developed to reconstruct patient \njourneys and gain insights on the motives and consider -\nations of participants during the decision-making process \nregarding treatment options. Topics that were discussed \nincluded: (1) participant’s experience with heavy men -\nstrual bleeding, (2) experience with patient journey of \ntreatment decision-making and (3) elaborating on alter -\nnative treatments for heavy menstrual bleeding. The \ntopic list included questions such as “What was the most \nimportant goal you wanted to achieve when visiting your \nphysician?” . The process of data collection and analysis \nwas iterative, alternating between them. After five inter -\nviews, inclusion criteria were broadened and women who \nreceived any treatment for HMB were recruited. Addi -\ntionally, after five interviews an option grid was intro -\nduced to discuss treatment options for HMB. This grid \nexplained advantages and disadvantages of various treat -\nment options for HMB offered in the Netherlands. The \noption grid was sent prior to the interview. After eight \ninterviews, no new main themes emerged.\nAll interviews were audiotaped and transcribed verba -\ntim. Data was collected until no new themes emerged.\nData analysis\nA descriptive thematic analysis was conducted using \nthe revised six steps of thematic analysis as described \nby Braun & Clarke (2019) [ 14]. In the first phase, the \nresearchers (TJO and RGS) familiarized themselves \nwith the data by re-reading the transcripts. In the sec -\nond phase, TJO and RGS independently fragmented and \ncoded the transcripts inductively. They coded the first \ninterviews independently and generated an initial list of \ncodes. Memos about contradictions or additional ques -\ntions were added. The initial list of codes and memos was \ndiscussed and if necessary, some alterations were made. \nIn the third phase, the codes were sorted into initial \nthemes. Patterns among the codes were identified by con-\nstant comparison. Researcher LZ joined the analysis pro -\ncess at this stage. The themes were visually represented \nin a thematic map. In the fourth phase, the themes were \nreviewed, discussed and revised with a senior researcher \n(MHD). In the fifth phase, the themes were refined and \nused as a framework for the remaining interviews. If new \npatterns and themes emerged, these were added to the \nexisting map. MAXQDA version 2021 (VERBI Software \n2021) was used to organize all data [15]. In the last phase, \nnarratives were written together with data extracts, and \ncontextualized using literature. The interviews and anal -\nysis were conducted in Dutch. Only quotations used \nin the article were translated from Dutch to English by \nthe researchers (TJO, RGS and LZ) and checked by the \nresearch team.\nRigor\nTo enhance credibility, summaries of the transcripts \nwere sent to the participant it concerned. Participants \nwere asked whether the summary was accurate, and if \nthey would like to clarify or rectify their responses [ 16, \n17]. Participants agreed or made some changes or sug -\ngestions. The topic list was reviewed by the researchers \nwho conducted the interviews after each interview and \nthe topic list was adjusted, if necessary (see Appendix \nA). Baseline characteristics are provided to describe the \ncontext of each participant (see Table 1). Lastly, to ensure \nconfirmability, the researchers (TJO, RGS, LZ) collabora-\ntively developed themes based on the interviews. These \nwere then discussed with MHD (peer debriefing).\nEthical considerations\nThe study protocol was approved by the Medical Ethics \nReview Committee of MMC. Study procedures followed \nwere in accordance with the Declaration of Helsinki. \nThe study aim was explained to participants prior to the \ninterview. Informed consent from all participants was \nobtained. Confidentiality was assured using restricted \naccess to the data and de-identification of the transcripts. \nInterview data was stored on a secured online research \ndrive.\nResults\nPatient characteristics\nFourteen participants, aged 30–59, were interviewed. The \nmajority reported experiencing symptoms of HMB for \nmore than five years. Additionally, participants received \nvarious treatments for their symptoms. Most participants \nwere treated with LNG-IUD or COC, and fewer with an \nEA or a hysterectomy. See Table  1 for a complete over -\nview of the participants’ baseline characteristics.\nBased on analysis of the interviews, three main themes \nand eleven subthemes emerged.\nTheme 1: considerations in taking the (next) step to seek \nhelp\nDespite the significant impact of severe bleeding on their \ndaily life, participants find it difficult to seek help for \nHMB. Most participants preferred a treatment without \nhormones. Some participants expressed they hoped for a \nnatural solution, like menopause.\nImpact on daily life stimulates seeking help (again)\nParticipants described their menstruation as heavy, illus -\ntrating this by examples of the amount, unexpectedness \nor duration of blood loss, and the impact on their daily \nlives.\n“Sometimes I was bleeding for 6–7 weeks in a row \nand then I wasn’t for 3 months, and then I was again \n\nPage 4 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nfor a day. I could not make any sense of it” (Partici -\npant 3).\nParticipants mentioned that staining and leaking from \nHMB had major impact on their daily lives. Several par -\nticipants explained how heavy bleeding during the night \ndisrupted their sleep, requiring them to wake up every \nfew hours to change menstrual products. Moreover, \nsome participants expressed feeling ‘dirty’ , or ‘unfresh’ \ndue to HMB.\n“Judo is a full contact sport, and if you don’t feel \nfresh, it is very difficult to be close to others. So that \nreally bothered me for a very long time” (Participant \n14).\nMany participants mentioned adopting precautionary \nmeasures to manage HMB. For example, participants \nused different menstrual products simultaneously, such \nas a tampon and a sanitary pad. Others explained the \nneed to bring an extra pair of clothes to work or when \ntraveling outside.\n“I’ve had to uh, uh, change pads and tampons every \nhour, so- And then uh, I always had extra clothes \nwith me. So, so um, I just couldn’t do anything. I \ncouldn’t leave {the house}, so to speak. I couldn’t \neven work anymore. Yes, I was there, but um, with \nan eh, with a pack of sanitary pads and tampons in \nfront of me. ” (Participant 13).\nSeveral participants were motivated to seek medical help \ndue to the significant impact of HMB on their daily lives. \nMany participants described reaching a personal thresh -\nold or experiencing a change in symptoms, leading them \nto visit their GP for help.\n“Even at night I had a tampon in and I had a \nsanitary pad and even then, my whole bed was \ndestroyed. I just had to get new mattresses, because \nyou just leak through. And then you’re like now \nsomething has to be done. ” (Participant 2).\nSeeking help is hindered by embarrassment\nFew participants found it embarrassing to go to the GP \nto talk about their menstrual complaints and expose their \nbodies. They found it very unpleasant to undergo vaginal \nexaminations, especially when they are menstruating. \nThis is a reason for participants to delay seeking help.\n“But I always think that it is the most um, well \nI really go to a doctor a lot, but um, this kind of \nappointments, I find, I find it embarrassing. I don’t \nknow. It makes me feel uncomfortable as a woman. ” \n(Participant 8).\nMenopause as a solution\nOther participants hoped for menopause as a natu -\nral solution. Many participants dealt with symptoms of \nHMB for many years. Therefore, waiting for menopause \nwas considered as an alternative to the non-invasive or \nsurgical treatments. Some participants said that they \nTable 1 Baseline characteristics of the participants (n = 14)\nAge group \n(years)\nNationality Highest level of \neducation\nDuration of symp-\ntoms (years)\nSymptoms reported Received \ntreatment(s)\n1 40–44 Hungarian/\nDutch\nUniversity 5–10 HMB, Fatigue LNG-IUD\n2 55–59 Dutch University > 15 HMB COC, LNG-IUD, EA\n3 50–54 NA NA > 15 HMB, Met COC, EA, OT\n4 45–49 Dutch University 5–10 HMB, Dys COC, LNG-IUD, \nEA + LNG-IUD\n5 55–59 Dutch HPE < 5 HMB COC, LNG-IUD\n6 50–54 Dutch HPE < 5 HMB, Dys COC, LNG-IUD, OT\n7 45–49 Turkish SVE > 15 HMB, PMS, Dys, Fatigue COC, LNG-IUD\n8 55–59 Dutch University 10–15 HMB, Met, Dys, PMS COC\n9 35–39 Dutch SVE 5–10 HMB, PMS OT\n10 30–34 Dutch SVE 5–10 HMB, Met, PMS COC, OT\n11 50–54 Dutch NA 10–15 HMB, Fatigue COC\n12 50–54 Dutch University > 15 HMB COC\n13 50–54 Dutch University > 15 HMB COC, LNG-IUD, OT, HE\n14 40–44 Dutch HPE < 5 HMB COC, OT, HE\nLNG-IUD  = Levonorgestrel releasing intra-uterine device, COC  = Combined Oral Contraceptive, EA = Endometrial ablation, HE  = Hysterectomy, OT = Other treatments \nsuch as (contraceptive injection, Implanon, Hormone therapy, NuvaRing, Tranexamic acid), HMB = Heavy Menstrual Bleeding, Dys = dysmenorrhea, PMS  = pre-\nmenstrual syndrome, Met  = Metrorrhagia, NA = No Available data, HPE = Higher professional education, SVE  = senior Secondary Vocational Education\n\nPage 5 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nwould rather wait a few more years until they reach \nmenopause than starting another treatment.\n“I think it {a hysterectomy} is very rigorous. And \nthat’s a pretty big surgery, um, with the necessary- \nYes, longer recovery also um, um, yes, I’m also with \nage considering- I think- I’m like, yes, suppose the \nmenopause is just- Yes, coming up, then it’s also \nsomething of, then I’d rather wait for that. ” (Partici-\npant 9).\nTheme 2: various sources of information can contribute, \nconfuse or frighten decision-making process\nDifferent sources of information contributed to a par -\nticipant’s knowledge of different treatment options and \ntherefore their decision-making. These sources included \none’s own experiences, experiences or opinions of oth -\ners, online information, and information and opinions \nprovided by the physician. Sometimes knowledge also \ncaused fear or uncertainty for a particular treatment or \nresult.\nInformation provided by physicians\nInformation received by the participants varied enor -\nmously. Some participants were well prepared for the \nrisks and benefits of a treatment, while others were com -\npletely overwhelmed by post-operative complications \nor side effects. Most participants received a leaflet with \ninformation about a treatment or were advised to read \ninformation on a website provided by the gynaecologist.\n“I was just given a leaflet, and it just says how the \ntreatment works and not what might happen after -\nwards. Yes, they tell you that you could have less \nblood loss and that you are going to have that nova -\nsure treatment {endometrial ablation}. […]. I just \nread the leaflet about how or what the treatment \nitself entails. ” (Participant 3).\nAn option grid provides information on possible risks \nand complications of all treatment options for HMB. \nMany of the participants did not recognize the option \ngrid or were not aware of all the possible treatment \noptions. One participant mentioned that the use of an \noption grid would be useful if she did not know all the \npossible treatment options.\n“So if I didn’t work in healthcare, I, I wouldn’t, I \nwouldn’t know those treatments, they wouldn’t \nhave said anything to me, so eh- At least, an IUD \nyes, but those medications without hormones and a \nNovaSure treatment, that wouldn’t really have said \nanything to me, I think. So I, I would like this, this \n{option grid}. ” (Participant 13).\nSpecifically, most participants reported being unprepared \nfor the abdominal pain after EA.\n“Well, I had a really bad stomachache 7 to 14 days \n{after treatment}. When I pointed that out, they {the \nphysicians} said: ‘yes, that’s part of it’ . This cannot be \npart of it. I believe I take 600 mg of ibuprofen, three \nto four times a day. Then I thought, this is not nor -\nmal. ” (Participant 2).\nSocial environment steers and confuses decision-making \nprocess\nIn the interviewee’s social environment, diverse opinions \nand experiences regarding treatments for HMB played a \nrole in the decision-making process. Some participants \nreported negative experiences from their social environ -\nment about certain treatments. These experiences con -\ntributed to a patient’s treatment decision.\n“No, because I have two friends who had IUDs and \nthey got pregnant with twins. So that didn’t work \nout either. And they weren’t yet, they did not have a \ndesire to have children, (…) So you always have to \nweigh up what you can and can’t do and the experi-\nences of others. And that’s what you actually do it \nwith. ” (Participant 10).\nIn addition, there were numerous stories about adhesions \nand pain after EA that contributed to participant’s treat -\nment decision.\n“Because I read that some people did have pain \nsymptoms from that that {endometrium ablation}. \nAnd that I thought, yes, always stomach pain, um, \nthat really held me back. ” (Participant 12).\n“But that there could also be adhesions. So that was \nactually for me- Anyway also from my acquaintance \nwhere it didn’t help either, but also those adhesions \nand that you then also had to go back to the gyne -\ncologist continuously, that actually made me decide \na little to refrain from that. (Participant 7).\nNeed for self-acquired information\nAnother source of knowledge for participants was self-\nacquired information. Many participants explained the \nnecessity of searching stories, experiences online and \nmore information about the procedures. While some \ninformation contained negative experiences about \ntreatments gone wrong, there were also stories about \n\nPage 6 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nthe positive effects of treatments. However, many par -\nticipants emphasized that their primary goal to look up \ninformation was to adequately prepare themselves.\n“Certainly not because not all the stories you read \nare equally positive. Hey, it’s, it’s also, there are some \nhorror stories, I might be too down-to-earth for that. \nOf course, it depends on each person and what is \nyour pain threshold. And what do you think is a lot \nand what kind of things do you mind? So, you have \nto filter that. And there were very few positive sto -\nries, about how well things are going. So you don’t \nfind those either. ” (Participant 4).\nOne participant searched online for videos and pictures \nof various treatment procedures.\nPast experiences influence decision-making\nOne’s own previous experience with a particular treat -\nment also plays a significant role in the decision-making \nprocess. Many participants mentioned a negative experi -\nence with the side effects of hormonal treatment. These \nside effects included mental health issues (mood swings \nand depression), making them reluctant to choose treat -\nments containing hormones.\nParticipants mentioned that taking hormones did not \nfeel natural. They also expressed that hormonal treat -\nments did not always reduce blood loss or premenstrual \nsymptoms.\n“Nausea, vomiting, headaches. Yes, headache and- \nLook, swollen breasts and belly you always have. \nBut it was like when I took the pill that it got much \nworse. ” (Participant 7).\nHowever, other participants had good experiences with \nhormones (COC or LNG-IUD), which made them feel \npositive about those treatments and ultimately made the \nchoice of treatment easy. One participant mentioned \nwhen discussing the endometrial ablation and the endo -\nmetrial ablation combined with the LNG-IUD, that she \nwould prefer the latter option based on previous experi -\nences with the LNG-IUD.\nExpectations and fears prior to treatment steer the decision\nWhile some participants considered treatment as a solu -\ntion to their complaints, others perceived it as an obsta -\ncle. Participants mentioned fear of complications or \nworsening of the symptoms as a consideration to reject a \nspecific treatment.\n“I mean, if you go for a treatment, then, of course you \nwant your problem to be solved in the end, but also \nyou don’t want a new problem to arise. Or another \nproblem or, or the same problem in, in- Yes, that, \nyou don’t want that. You want your problem to be \nsolved in the end. ” (Participant 9).\nThe potential side effects of treatment on their daily life \nwere also a consideration. For example, abdominal pain \nafter undergoing an EA and an inability to continue \nwith daily activities were considered as disadvantages of \nEA. Other participants did not prefer a hysterectomy. \nThis treatment was seen as invasive and painful, and it \nrequired an extended recovery time.\n“Um, well the pain um, I was um, very afraid of it \nanyway. And I had heard stories about other people \nwho had been in a lot of pain. So I was, I thought, \nvery exciting. And the period afterwards of eh, I’m \nquite a busy bee. And then the six weeks of doing \nnothing and, eh, basically not being allowed to lift \na carton of milk, I really dreaded that. ” (Participant \n14).\nParticipants who underwent a hysterectomy expressed \nthat taking a short break from daily activities due to the \nsurgical procedure was perceived as a minor setback \nopposed to the disadvantages of HMB. For example, the \nfollowing participant already underwent three treatments \nbefore a hysterectomy and she described her decision \nleading to the hysterectomy as a tough journey:\n“Um, so those advantages did far outweigh the dis -\nadvantages for me. The disadvantages are that you \njust have a long recovery, it’s quite an operation and \nI was a bit worried about that. But um, it’s also been \na tough journey in the end, because it was a tough \nok, but um, yes, it’s the best decision I could have \nmade, I think. ” (Participant 13).\nAt first this participant was disappointed with what she \ncould do during recovery, but when she was fully recov -\nered, she was satisfied with the end result.\n“During recovery um, yes, at the time I was disap -\npointed with what I could actually do, so to speak. \nI couldn’t do anything. Um, and I really had to take \na lot of rest and when I was fully recovered, yes, that \nwas absolutely super, no more trouble from anything \nand eh, yes, ideal. I should have done that much ear-\nlier. ” (Participant 13).\nThe majority of the participants suffered from HMB \nfor several years and expressed the desire for a mild or \nregular menstruation, or no menstruation at all. They \nemphasized that the burden of their symptoms affected \ntheir daily lives. Anticipated treatment effects such as \n\nPage 7 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nreduced blood loss and increased control over their lives \nwere mentioned as factors influencing their treatment \ndecisions.\nWhen asking their initial preferences for treatment, \nsome participants indicated they preferred the least inva -\nsive treatment, such as hormonal contraception. One \nparticipant mentioned preferring an LNG-IUD opposed \nto COC, since it does not require taking a pill every day.\n“I don’t want to deal with it. I just want Mirena in \nand be done. Hopefully then it will be inserted prop -\nerly. And they’re just going to monitor it really well \nthis time, every so often they’re going to check to see if \nit’s still in place. So you know, then you don’t have to \nworry about it anymore” . (Participant 7)\nIn contrast, some participants considered hormonal con -\ntraception (taking a pill daily) as a simple treatment.\nMany participants favored a hysterectomy, viewing it \nas a definitive solution. They mentioned benefits such as \n‘getting rid of all the symptoms’ or no more blood loss. \nSome of the participants had no desire for additional \nchildren and considered their uterus as unnecessary. One \nparticipant mentioned that if a hysterectomy would elim-\ninate premenstrual symptoms, she would prefer that.\n“Coming from me, I would have said: take out the \nwhole uterus and be done with it. I would have said \nthe same thing 10 years ago, gee, I don’t mind if it’s \ntaken out. “ (Participant 3).\nTheme 3: A physician’s understanding and a relationship of \ntrust are needed to guide the decision-making process\nA physician’s attitude, the feeling of being heard and \nroom to express one’s own choice during the decision-\nmaking process affected the experience of the partici -\npants. Most participants highly valued the opinion of \ntheir physician and some followed their advice.\nThe importance of the feeling of being heard\nParticipants emphasized the importance of the relation -\nship with their treating physician in their decision-mak -\ning. To them, being heard and taken seriously during \nconsultation was important for their appraisal of the \nrelationship.\n“When the internist took me seriously about the ane-\nmia, that really made me feel supported. Because \nearlier, I have also been to an internist and they were \nlike, yeah, well, it’s part of it, end of story. ” (Partici-\npant 12).\nAlthough some participants were appreciative of the \nrelationship, others did not feel heard by their physi -\ncian. Some participants mentioned that the physician \ndid not notice their symptoms of HMB at first. Others \nmentioned that their physician did not take their pain \nseriously, which made some participants feel like their \ncomplaints were “trivial” . All these factors led to a feeling \nof not being heard by a physician.\n“Well, I think I had a really bad stomachache 7 to \n14 days {after treatment}. And if you indicate that \nand they {physician} say: ‘yes, that’s part of it’ . Then I \nthink: this is not part of it, I believe I took ibuprofen \n600 mg and then three to four a day. Then I think: \nI don’t think this is normal. There was something \nwrong with that. Well, that was not picked up. I \nregret that. ” (Participant 2).\nRoom for expressing one’s own choice next to the physician’s \nopinion is important\nParticipants mentioned the importance of expressing \none’s own treatment preference. They expressed that an \nopen relationship with their physician made it easier to \nexpress their wishes. Participants expressed that they \nappreciated being given the time to consider different \ntreatments and make a shared decision. In contrast, in a \nrelationship in which a physician is very directive, little \nspace is left for a patient’s own choice.\n“Well, I actually wanted to go for Novasure {endo -\nmetrial ablation} then, but then they thought I was \ntoo young for that. Then I was about forty and then \nthey thought I was too young for that, while, I knew \nmyself that I had no desire to have children, eh, I \nhad no partner at that time” (Participant 11).\nParticipants often expressed that their treating physi -\ncian strongly suggested which treatment the participant \nshould undergo. Consequently, not all treatment options \nwere presented to the patient. In particular, the option to \nperform a hysterectomy was often not discussed or was \nvery quickly discarded for various reasons.\n“Yes, too young and all that, and we can always \ntry other treatments. I say, yes other treatments, I \ndon’t see the point. If someone suffers so much, and \nnot just for a moment but for a number of years. I \ndon’t want to have children, never have and never \nwill. And it’s the patient’s wish, “Oh, I don’t mind \nhaving my uterus removed. I don’t see the point in \nit not being allowed or being possible” . Because then \nI think, as a patient, I am actually being hindered in \nmy choice, because they have already made a choice \n\nPage 8 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nfor me not to do it. While they do mention it as an \noption to be able to do it, ultimately” . (Participant 3)\nTrusting the physician matters\nParticipants also mentioned that trust in the relationship \nwith the physician is key. Some participants fully trusted \ntheir physicians and let them decide.\n“No, I didn’t have eh, no I didn’t have myself oh, I \nthink, if I go to the gynecologist, he must know what \nis best […] And burning {ablation} thought my gyne -\ncologist, he’s not in favor of that. So that was already \nmeasuring with him of we’re not going to start that, \nbecause I don’t like it, because that’s more um, caus-\ning problems than it is solving. That was his own \nopinion, so I think, then I follow his opinion. ” (Par -\nticipant 10).\nNevertheless, other participants mentioned distrusting \ntheir physician or their competence. Reasons to distrust a \nphysician included: inattentiveness to symptoms, rumors \nabout specific physicians, or instances where a general \npractitioner (GP) refused to refer a patient to a gyne -\ncologist. For some participants, this resulted in avoiding \nappointments with their physician.\n“Well, he checked, but yes, he thought I was squea -\nmish. Well, okay. Yes, sorry, but the treatment itself, \nI found, compared to the pain after. So, just to put it \nin perspective. So in your eyes I might be squeamish, \nbut yes, you don’t know the background, I think at \nthat moment. […] If I had known that he was the \ngynecologist on duty, I would not have gone. I say \nvery honestly, in retrospect. Because I heard several \nstories about him” . (Participant 4)\nDiscussion\nThe aim of this study was to gain insights in the experi -\nenced impact of HMB and the motives and consider -\nations of women during the decision-making process \nregarding treatment options for HMB. The three main \nthemes that emerged are “Considerations in taking the \n(next) step to seek help” (Theme 1), “Various sources of \ninformation can contribute, confuse or frighten decision-\nmaking process” (Theme 2) and “ A physician’s under -\nstanding and a relationship of trust are needed to guide \nthe decision-making process” (Theme 3).\nThe burden of HMB on daily life was an important rea-\nson to seek for help, but differed enormously between \nthe participants. This is in agreement with Chapple et \nal. (1999) who found that symptoms which “started to \ndisrupt their lives were commonly the trigger to seek \nmedical help and differ between women” [ 18]. The pro -\ncess of seeking help consists of different steps. Initially, \nthe perception of menstrual bleeding as ‘abnormal’ must \nbe acknowledged, followed by the decision to determine \nthe legitimacy of seeking medical help. The interviews \nrevealed that some participants had a negative connota -\ntion towards hormone-containing treatments, mainly \ndue to the perception of administered hormones not \nbeing natural. The study of van den Brink et al. confirms \nthis finding, as further explained below [19].\nWomen’s knowledge about the different treatment \noptions comes from a variety of sources, such as the \ninternet, their own experiences, others’ experiences \nand opinions, and the opinions of their physicians. In \nthe study of Vuorma et al. (2003), approximately one in \nthree women (17–34%) felt like they were not sufficiently \ninformed by the physicians on the benefits and compli -\ncations of alternative treatment options for HMB. Prefer-\nences regarding treatment were most strongly associated \nwith women’s pre-visit preferences [ 20, 21]. Many par -\nticipants considered treatment for HMB as an obstacle, \nas they feared side effects, complications and disruption \nof daily life. Participants were also afraid that treatment \nwould not provide a definite solution or might worsen \ntheir symptoms. Therefore, many participants favored \nthe least invasive treatment. This finding is also in line \nwith the results of van den Brink et al. (2018) [ 19]. They \nstudied women’s preferences for treatment of HMB and \nconcluded that the presence of hormones, the (ire)revers-\nibility of treatment and effect on irregular bleeding were \nimportant in making a treatment decision. In our study, \nparticipants mentioned the presence of hormones as a \nfactor influencing their decision to not choose a spe -\ncific treatment. Nevertheless, the study of van Den Brink \ndoes not elaborate on the specific motivations of women \nduring the decision-making process. However, it is \nimportant to note that participants differed in their pref -\nerences. While some participants preferred non-invasive \ntreatments, others favored a hysterectomy, as it offers a \ndefinite solution for their complaints.\nThe experienced relationship with a physician played a \nmajor role in the participant’s treatment decision-mak -\ning. Participants expressed that the feeling of being heard, \ntrust in the physician and being able to express one’s own \nchoice were important in the appreciation of the relation-\nship. Experiences of participants varied, some valued the \nrelationship with their physician, while others felt dis -\ntrust towards their physician. The opinion of physicians \nseems to dominate the decision-making process. Eising \net al. (2018) explored key factors for successful support \nin patients with Von Willebrand disease, faced with HMB \n[22]. Their research found that a precondition for support \nis a good relationship with a physician: a trusting rela -\ntionship, where information can be shared. The findings \n\nPage 9 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \nin this study are in line with findings from Eising et al. \n(2018). According to the research of Skea (2004), 75% of \nthe women who underwent a hysterectomy for HMB pre-\nferred to make the decision together with their physician \n[23]. 4% of women preferred the physician to make the \ndecision, while 2% wished to make their own decision.\nThe desired outcome of the treatment varied among \nparticipants, ranging from achieving a mild menstrua -\ntion through a simple treatment to seeking a definitive \nsolution by undergoing an invasive treatment such as a \nhysterectomy. The participants had varying expectations \nregarding the treatment, including considerations of its \ninvasiveness or effectiveness. These expectations steered \nthe final treatment decision. Kennedy et al. (2003) con -\nducted a randomized controlled trial to evaluate the \neffect of structured preference elicitation interviews \nduring the decision-making process for treatment of \nHMB [ 24]. The first group received a video explaining \nthe different treatment options, while the second group \nalso met with a research nurse to discuss different treat -\nment options. Concluding, women who got a chance to \nelaborate their preferences, underwent second invasive \ntreatment (hysterectomy) less often after two years of \nfollow-up. Also, satisfaction rates were higher and health \ncare costs were lower in the group of women who were \nseen by the research nurse. This is in line with the results \nof our study. This highlights the importance of under -\nstanding woman’s motivations and considerations when \ndeciding on a treatment.\nA helpful tool to counsel the advantages and disadvan -\ntages of the various treatment options in the consulting \nroom is the use of an option grid, commonly used in the \nNetherlands. This grid briefly explains the success rates \nof the various HMB treatments as mentioned above, \nas well as the benefits and complications. In this study, \nwe sent an option grid prior to the interview, which we \nused as an overview of the possible treatments offered in \nthe Netherlands. We did not study the usefulness of the \noption grid, but we asked if the participants recognized \nthe grid. More important, we asked if they recognized all \nthe treatment options. It was noticeable that most partic-\nipants were not aware of all the treatment options avail -\nable for HMB. A helpful way to explain all the treatment \noptions during consultation is to use an option grid.\nStrengths and limitations\nA strength of this study is that by using in-depth inter -\nview methods we were able to foster a safe environment \nto gain the participants’ trust to share their experiences. \nAnother strength of this study is that we interviewed \nwomen who had experienced HMB multiple years and \nwere therefore at different stages of the disease with a \nvariety of treatment experiences. We aimed to ensure \ntransferability by providing baseline characteristics of \neach participant. Additionally, the topic list was dis -\ncussed by two researchers after each interview and \nadapted after five interviews. To ensure dependability, \nwe collected data until no new themes emerged. After \neight interviews, no new main themes emerged. In addi -\ntion, we analyzed the data iteratively and we refined the \nthemes if necessary. Finally, to ensure credibility, partici -\npants received a summary of the results and were asked \nfeedback on the interpretation of the results. All partici -\npants responded and seven participants did not suggest \nany changes or clarifications.\nOur study was limited to the experiences and consid -\nerations of women who received treatment of HMB. \nExperiences of women who have never sought medi -\ncal consultation or consulted a physician but refrained \nfrom treatment were not included. Since we recruited \nparticipants through questionnaires and flyers, it is pos -\nsible that self-selection bias occurred. It is possible that \nwe only interviewed participants who were comfortable \nwith sharing their stories, leading to a bias in the data \n[25]. It is also possible that the members of the Nether -\nlands Patients Federation who participated in this study \nwere more assertive than the average patient. Amongst \nthe participants, there is diversity in terms of age, edu -\ncation level, years of experience with HMB and type \nof treatment. Unfortunately, there is little variation in \nnationality. As a result, topics such as culture and religion \nand whether these factors play a role in considerations \nfor treatments are not included. The data was retrospec -\ntively collected, which may have increased the possibil -\nity of recall bias. Women who consulted a physician five \nyears prior to the interview were eligible for our study. \nRecall bias was minimized by recruiting women through \nthe patient clinic of MMC who were in the midst of their \ntreatment. Motives and considerations regarding the \nreceived treatment may be influenced by the effective -\nness of the received treatment, the moment in the patient \njourney and previous experiences of treatments for HMB. \nAlso, the interviews were conducted by two researchers, \nof which one is a medical doctor. This may have impacted \nopenness of the interviewee due to perceived formality. \nIn addition, the doctor’s presence may have introduced \nresponse bias. To address this, we implemented rapport \nbuilding and engaged in reflexive practices. Lastly, the \ninterviews were conducted in Dutch therefore the quotes \nwere translated into English by the research team. As a \nresult, the emotion of the quotes could get lost in the \ntranslation.\nRecommendations Our results suggest that a patient’s \ntreatment decision is influenced by the attitude and com-\nmunication of their physician. The findings of this study \nallow for the formulation of a few recommendations. \nMost significantly, it is critical to foster an environment \nof open communication during consultation so that the \n\nPage 10 of 11\nOderkerk et al. BMC Women's Health          (2024) 24:439 \npatient feels at ease with the physician. Patient-centered \ncommunication is a helpful communication tool to use \nduring consultation [ 11]. It acknowledges the entire per -\nson, their personality, life history, and social structure in \norder to develop a shared understanding of the problem, \ntreatment goals, and barriers to those goals. This allows \nus to gain an understanding of the motivations for a cer -\ntain belief, experience, or knowledge from the perspec -\ntive of women. It is also important to consider that shame \nand discomfort may play a role in the decision to consult \na physician.\nParticipants of this study particularly valued being \ninformed about all possible treatment options for HMB, \nincluding the advantages and disadvantages of each treat-\nment. The option grid can be a helpful tool to use during \nthe decision-making process.\nIn future research, we recommend a prospective study \nwith a long follow-up, following women from the onset \nof their patient journey to investigate all possible factors \ninfluencing treatment decisions.\nConclusion\nThis study provides insights into patients’ motives and \nconsiderations during decision-making for treatments of \nHMB, but also in the long and confusing journey some \nparticipants experienced. The first obstacle to overcome \nfor women with HMB is to decide that help is needed \n(again). Main considerations in the decision-making \nprocess include obtained information and experience, \nrelationship with the physician, influence of the social \nenvironment, pre-visit expectations/desires, fear of treat -\nment complications and uncertainty of treatment effect. \nIt is the responsibility of the physician to create a trusting \nand open atmosphere during consultation. Patient-cen -\ntered communication is helpful to share knowledge, and \ngain insight into patients’ hopes, fears and worries. Addi-\ntionally, it is essential to offer the patient comprehensive \ninformation to support informed decision-making.\nAbbreviations\nHMB  Heavy menstrual bleeding\nLNG-IUD  Levonorgestrel-releasing intra-uterine device\nEA  Endometrial ablation\nNPF  Netherlands Patient Federation (Dutch patient \nfederation). See also: https://www.patientenfederatie.nl/\nnetherlands-patients-federation\nCOC  Combined oral contraceptive\nAcknowledgements\nThe researchers thank all the participating women in this study.\nAuthor contributions\nAll authors took part in designing the study. TJO and RGS conducted the \ninterviews and transcribed the audio recordings to text. TJO and RGS \nperformed the initial analysis and identified and organized the meaning \nunits into codes and preliminary groups of themes. TJO, RGS, LZ and MHD \nparticipated in developing a final structure for the themes and subthemes. \nTJO, RGS and LZ made a first draft of the article. TJO, RGS and LZ finalized the \nmanuscript in cooperation with PMAJG, EJEH, MYB and MHD. All authors read \nand approved the final manuscript.\nFunding\nNo funding.\nData availability\nThe datasets used and analysed during the current study are available from \nthe corresponding author on reasonable request.\nDeclarations\nEthics approval and consent to participate\nThe study protocol was approved by the Medical Ethics Review Committee \nof Máxima MC corresponding number N20.025 / L20.027. The study aim \nwas explained to participants prior to the interview. Informed consent of all \nparticipants was obtained. Study procedures followed were in accordance \nwith the Declaration of Helsinki.\nConsent for publication\nNot applicable.\nCompeting interests\nThe authors declare no competing interests.\nAuthor details\n1Department of Obstetrics and Gynecology, Máxima Medical Center, P .O. \nBox: 7777, Veldhoven MB 5500, The Netherlands\n2Department of Obstetrics and Gynecology MUMC+, Grow-School \nof Oncology and Reproduction Maastricht University, Maastricht, The \nNetherlands\n3Department of Ethics, Governance, and Society, School of Business and \nEconomics, VU University Amsterdam, Amsterdam, the Netherlands\n4Department of Health Sciences, VU University Amsterdam, Amsterdam, \nthe Netherlands\nReceived: 7 May 2024 / Accepted: 17 July 2024\nReferences\n1. Practice. bulletin no. 128: diagnosis of abnormal uterine bleeding in \nreproductive-aged women. Obstetrics and gynecology. 2012;120(1):197–206.\n2. 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