Patient preference for treatment of an endometrioma, a qualitative study

Decision-making Focus groups Qualitative research Endometriosis Endometrioma

Objective: The aim of this qualitative study was to identify considerations, objections, and preferences of women with symptomatic ovarian endometrioma in the shared decision-making process. Design: This study was conducted as a qualitative study, including twenty patients facing or faced therapeutic treatment options for an ovarian endometrioma. Setting: Four focus groups were held between February 2020 and June 2021 in the Netherlands. Two of them were held online due to COVID-19 pandemic. Population: A qualitative study was performed using semi-structured in-depth focus group methodology. All women, aged 27 – 44 years, suffered from pain.

The focus groups were audio recorded and fully transcribed using ATLAS-ti. Grounded theory meth - odology was applied for data analysis. Main outcome measures: Outcome measure includes the most important aspects during decision-making process for patients facing or faced therapeutic treatment options for an ovarian endometrioma.

A total of twenty Dutch women with an ovarian endometrioma were included. Participants named “ relief of pain ” , “ fertility ” , “ adverse effects or surgical complications ” , “ recurrence of pain and lesions ” , and “ time untill treatment effect occurs ” as most important aspects during their decision-making process. In addition, women often felt “ unheard ” , so more attention should be paid to symptoms of endometriosis.

Participants named “ relief of pain ” , “ fertility ” , “ adverse effects or complications ” , “ recurrence of pain and lesions ” , and “ time untill treatment effect occurs ” as most important aspects during their decision-making process.

Endometriosis is a chronic inflammatory disease defined as the presence of endometrium-like tissue outside the uterus [ 1 ]. The preva - lence of endometriosis varies between 2 – 10 % among the general female population of reproductive age, but rises up to 50 % in women suffering from infertility and/or chronic pelvic pain (CPP) [ 2 – 5 ]. Endometriosis can be asymptomatic, but is associated with infertility and/or symptoms of, for example, dysmenorrhea, dyspareunia, chronic pelvic pain (CPP), dyschezia, or dysuria [ 6 , 7 ]. This pain can be explained by nociceptive pain, due to actual tissue injury or inflammation or nociplastic pain which results from abnormal processing of pain in the nervous system, even without clear tissue damage or nerve injury. These symptoms of endometriosis result in significant reductions in women ’ s quality of life, their social participation, and their sexual health, despite its predomi - nately benign nature [ 8 , 9 ]. One of the most common manifestations of endometriosis is the formation of an ovarian endometrioma (ovarian cyst with endometrium-like lining), affecting 17 – 44 % of women with endometriosis [ 10 , 11 ]. Treatment options include surgery or medical treatment (analgesics and/or hormonal therapy). Evidence from previ - ous studies showed that both treatment options for ovarian endome - trioma are effective in reducing pain symptoms [ 12 – 16 ]. The ESHRE guideline recommends surgical or hormonal treatment as well as anal - gesics, using a shared decision-making approach and taking individual preferences into consideration [ 1 ]. As all different treatment options have both advantages and disadvantages, optimal counselling is essen - tial to achieve a balanced shared decision-making. A first step towards better counselling of patients with an ovarian endometrioma is to obtain * Corresponding author at: Department of Obstetrics & Gynaecology, M ´axima Medical Center, Veldhoven, The Netherlands. E-mail address: [email protected] (V.B. Veth). Contents lists available at ScienceDirect European Journal of Obstetrics & Gynecology and Reproductive Biology journal homepag e: www.jou rnals.elsev ier.com/europ ean-journa l-of-obste trics-and-gy necology-a nd- reproductive -biology https://doi.org/10.1016/j.ejogrb.2025.113999 Received 11 December 2024; Received in revised form 20 February 2025; Accepted 21 April 2025 European Journal of Obstetrics and Gynecology 310 (2025) 113999 Available online 22 April 2025 0301-2115/© 2025 Published by Elsevier B.V. insight into the decision-making process for women ’ s treatment of choice. It is important for gynaecologists to gain a thorough under - standing of which risks and benefits are important for patients, as well as which insights matter most. The aim of this study is to identify considerations, objections, and preferences among women with an ovarian endometrioma facing treatment. This will provide deeper understanding of the decision- making process for women with symptomatic ovarian endometriomas.

Study design A qualitative study design was used, with a semi-structured focus group methodology. We chose a qualitative focus group study, because this research method answers the questions best regarding experience and perspective of patients with an ovarian endometrioma [ 25 ]. Recruitment and participants Women included in this study were Dutch-speaking, premenopausal, with a minimum age of 18 years old, diagnosed with a symptomatic ovarian endometrioma. Symptomatic was defined as pain, such as dysmenorrhea, dyspareunia or chronic abdominal pain complaints. We excluded women who were facing fertility problems but did not have any pain complaints. These women were facing or faced a decision- making process for their treatment. After receiving oral and written study information, participants provided informed consent before joining the focus groups. No predetermined number of focus groups was established. The groups continued until data saturation was reached, with 5 – 8 women per group as recommended [ 26 ]. Data saturation was reached if the last focus group no longer showed any new insights. Focus group one (FG1) took place in February 2020. The following focus groups were postponed for several months due to COVID-19. The second focus group (FG2) took place in August 2020. With the intention to allow the other focus groups to take place on location, it was once again decided to suspend the focus groups after the second focus group. However, given the increased restrictions by the COVID-19 pandemic, the decision was made to conduct the remaining focus groups digitally. These took place May 2021 (Focus group 3, (FG3)) and June 2021 (Focus group 4, (FG4)). FG1-FG3 included participants treated at Endometriosis Expertise Center of M ´axima Medical Center (M ´aximaMC), Veldhoven, while FG4 also included patients from Endometriosis Expertise Centers of Maastricht University Medical Cen - ter (MUMC + ) and Amsterdam UMC, the Netherlands. Travel costs were reimbursed for FG1 and FG2 participants. Research methodology and data collection method All focus groups were facilitated by the same researcher (AS). This researcher was not involved in other studies these women were involved in, nor is the researcher involved in the follow-up study, to completely avoid personal bias as advised by the COREQ checklist [ 27 ]. Prior to the focus group, we asked these women to complete a short questionnaire with baseline questions about time to diagnosis, previous pregnancies or what treatments they already had received for their endometrioma. Permission for audio recording, and, for FG 3 and FG4 video recording, was obtained before the start of the focus group, whereby confidentiality and anonymity in data processing and reporting were assured. We ensured an open and safe discussion in which women could name all the aspects that were essential to them in their treatment decision. At the end of the session, women were asked to rank their aspects, with number one indicating which aspect is most contributing to their choice of treatment option, and number five being the least contributing aspect. Data analysis Audio tapes were transcribed verbatim and analyzed thematically using ATLAS-ti. Thematic analysis means that the transcribed focus groups were examined to extract core themes within transcripts [ 28 ]. This analysis started with reading the transcripts and classifying the data by codes. These codes were divided into attributes. This was performed by two researchers (AK and VV), who started with inductive coding. After the first focus group, also deductive coding was used, as the at - tributes obtained from the first focus group were also known. The results of this thematic analysis were discussed within the research team (AK and VV), to reach consensus.

Sample characteristics A total of four focus groups were held. Of these four, two of them were held face to face and the other two online due to the COVID-19 pandemic. A total of twenty women participated. FG1 consisted of five women, FG2 of four women, FG 3 of six women and FG 4 of five women. The average time per session was 106 min, with a range of 74 to 127 min. All focus groups started with a short general introduction by all participants and the involved researcher. In the first focus group, the general question, namely “ what is important in the choice of treatment for your endometrioma ” , was not fully understood by the participants, so afterwards, this general question was evaluated and adapted to “ we would like to know what important aspects are for you to choose one or the other treatment ” . During the focus groups, we clarified this question by adding “ it is not about which treatment you would choose, but which aspects of the treatment are important to you ” . After this, we moved on to the research question that we would like to have answered at the end of the focus groups, which was: “ which aspects are important when choosing surgical treatment, or medical treatment? ” . This study is a preparation for the SOMA study, an ongoing study in the Netherlands. This study is a RCT and prospective cohort study that compares opera - tive treatment to medication in women with an endometrioma (SOMA trial) [ 29 ]. Baseline characteristics are stated in Table 1 . Pain symptoms asso - ciated with endometriosis were obtained through questionnaires which were completed prior to the focus group. A numeric rating scale (0 – 10, with0indicatingnopain) was requested for dysmenorrhea, dyspareunia, chronic pelvic pain, dysuria and dyschezia, based on the past month ( Table 2 ). Identified themes In this qualitative study where we have explored motives in the treatment decision-making process for women with symptomatic endometrioma, the following fixed themes were identified: “ relief of pain ” , “ fertility ” , “ adverse effects or complications ” , “ recurrence of pain of lesions ” , and “ time untill treatment effect occurs ” . Fig. 1 shows the themes that recurred in all focus groups. The data was merged for each theme separately and are illustrated with quotes from the transcripts. Theme 1: Relief of pain Symptomatic women with endometrioma mainly want to get rid of painful symptoms related to their ovarian endometrioma or endome - triosis in general. Pain is the primary complaint mentioned which is also illustrated by the high pain scores and associated moderate QoL ( Table 2 ). Different types of pain were described, such as dysmenorrhea, dyspareunia and low back pain. In the questioning we did not distin - guish between complaints that fit with nociceptive or nociplastic pain. Patients did not make a distinction either. V.B. Veth et al. European Journal of Obstetrics & Gynecology and Reproductive Biology 310 (2025) 113999 2 Women said that initially it does not matter how the pain goes away, as long as it goes away. “ For me the pain was really so high actually. It was so painful that just the simplest things in life were actually already very difficult. So, yes, [ … ] the pain was for me at that moment also really unbearable, so to speak ” (FG4). Another women stated: “ If I ’ m just in so much pain that you can ’ t even move or can ’ t even put on a sweater because of the pain[ … ] no, that has to be resolved first and then move on. [ … ] it was just too extreme ” (FG4). There was a conflicting opinion as to whether endometriosis lesions should be completely removed. Some of the women indicated that if the pain was gone, they were satisfied. If there were still endometriosis le - sions left, that is not a problem, provided this would not lead to disease recurrence in the long-term and could not cause complications/prob - lems in the future. Others indicated that even if the pain would be completely gone, they also wanted the endometriosis lesions to be removed. These two different basic principles determined the treatment choice that these women preferred. The women who had expressed the preference of the endometriosis lesions to be gone were much more likely to opt for surgery compared to the other group. Theme 2: Fertility The desire to conceive and the adverse effects of both ovarian endometriomas and the various treatment options on fertility were an extensively discussed topic during these focus groups. In contrast to women who had no desire to conceive, women with a current or future desire to conceive took the effects of the endometrioma itself and the effects of the chosen treatment on their fertility into account in their decision-making process. “ I had written down as the first point, and the most important point, the influence of treatment on fertility. That this would actually be the, yes, immediately the decisive factor in whether or not to operate or whether or not to use medication ” (FG4). On the other hand, there were also women in the focus groups who do not wish to conceive, or women with a fulfilled wish to conceive. The first group clearly indicated that the desire to conceive did not play an obvious role in their decision to choose a treatment. This compared to women with a completed desire to conceive, who indicated that they currently do not take fertility into account, but that this is a subject that should be discussed and included in the treatment decision options. Theme 3: Adverse effects of medication or complications of surgical treatment Adverse effects of medication were mentioned several times as a major objection to use hormonal treatment, especially mentioned by women who have used hormonal medication in the past. Several adverse effects that have been mentioned were: increased pain, irregular blood loss, headache, nausea and vomiting, changes in mood, depressed feel - ings and decreased libido. During the focus groups, women repeatedly indicated that care providers should pay more attention to the adverse effects of hormonal treatment. In particular, the changes in mood, libido and the develop - ment of negative or even depressive feelings were, according to most women, too little exposed. “ I then opted for the operation and also because I prefer not to have a lot of hormones myself. Yes, because I have the idea that you also change your personality? a bit, or mentally [ … ] ” (FG1). The Table 1 Baseline characteristics of the focus groups and participants. a One woman did not respond to this question. b One woman did not respond to this question. c Triptorelin and Gonadotropin preparations for IVF. Characteristics Total (N ¼ 20) Duration of Interview (min) 105.5 Age, y 34.60 ± 5.51 Age at diagnosis a 24.63 ± 7.85 Time untill diagnosis in months 30.40 ± 5.72 Education level N (%) ​ Pre-vocational secondary education 1 (5) Secondary vocational education 9 (45) Senior general secondary education 2 (10) Higher vocational education 5 (25) Graduate degree 3 (15) Relationship b N (%) ​ Yes 15 (79) No 4 (21) Children N (%) ​ Yes 6 (30) No 13 (65) Currently pregnant 1 (5) Wish to conceive in the future N (%) ​ Yes 12 (60) No 8 (40) Unfulfilled desire for children N (%) ​ Yes 7(35) No 13 (65) Current hormonal medication N (%) ​ No hormonal medication 9 (45) Ethinylestradiol/levonorgestrel 4 (20) Etonogestrel (Implanon) 1 (5) Progesterone only 2 (10) Transdermal estradiol 1 (5) Contraceptive vaginal ring 1 (5) IUD 1 (5) GnRH analogue 0 (0) Other 1 (5) Previous surgery for endometriosis N (%) ​ Yes 12 (60) No 8 (40) Ever experienced a complication during endometriosis surgery N (%) ​ Yes 3 (15) No 17 (85) Note: Data presented as mean ± standard deviation of n (%) unless noted otherwise. GnRH = gonadotrophin releasing hormone; IUD = intrauterine de - vice, N = number, y = year. Table 2 Pain scores and overall quality of life scale. Note: Data presented as mean ± standard deviation. N = number, NRS = numeric rating scale, VAS = visual analogue scale. Pain scores (NRS 0 – 10) Total (N) Dysmenorrhea 7.06 ± 2.44 (16) Chronic pelvic pain 5.38 ± 2.96 (16) Dyspareunia 5.06 ± 3.11 (16) Dysuria 3.13 ± 2.70 (15) Dyschezia 4.63 ± 3.14 (16) Overall quality of life scale (NRS 0 – 10) Total (N) Overall quality of life 6.05 ± 2.97 (20) Fig. 1. Theme ’ s resulted from focus groups. V.B. Veth et al. European Journal of Obstetrics & Gynecology and Reproductive Biology 310 (2025) 113999 3 psychological changes due to hormonal treatment are not always un - derstood, either by the patient’s environment or by the care giver involved. Women therefore had the feeling that they were not heard and/or understood by those who should be supporting them. Women indicated that the dialogue should be started between women and health care providers about the advantages, but even more about the disad - vantages of hormonal treatment. Besides, women indicated that the adverse effects were sometimes even worse than the symptoms associated with endometriomas. If this was the case, women withdrew from hormonal treatment. “Well, I’d rather have the pain than the symptoms I had as a result of the hormones. And the pain that was really very intense. […] I could still work with the pain, but not with those hormonal side effects.” (FG3). In addition to the adverse effects of the hormonal medication, the risks of complications from surgery were also mentioned. Women mentioned the fear that more damage will be done due to complications during surgery and that more tissue would be removed, more than only the ovarian endometrioma. It is also indicated that the fear of compli - cations is also related to the expertise of the doctor involved. “But in such a consideration also the quality of the doctor, because I wouldn’t want to let just anyone do this.” (FG3). Despite perceptions on side effects and complications, women were willing to accept some of them and accept that there were risks involved with an operation, as long as the pain symptoms disappeared. Theme 4: Recurrence of endometriosis lesions or endometriosis related pain During all focus groups, it was often said that recurrence of endo - metriosis, especially if it is accompanied by recurrence of endometriosis- related pain, would certainly be a theme that determines treatment choice. The fear of recurrence was often associated with either needing surgery again, or damage to healthy, non-endometriotic ovarian tissue. One woman stated: “If you need to have an ovary removed or partially removed then of course you hope that the other one continues to work. And if there is a chance that it will come back in the other ovary, then what? Because then you won’t have a working ovary anymore. Not a good one. Just saying. A clean one” (FG 4). The disadvantage of having surgery was also mentioned, with both aesthetic problems (for example scars on the skin), as well as recovery time and, again, the risk of complications during this surgery. The suppression of endometriosis by hormonal treatment was not equally desirable for all women. Some women accepted the potential side effects of hormonal treatment to limit the risk of lesions recurrence after sur - gery, while others considered the risk of reoperation less decisive than the side effects of the hormonal treatment. The realization that endo - metriosis lesions can recur, especially without hormonal suppression, was well known to the women involved. As one woman mentioned: “I always call it weeds that keep coming back” (FG3). Theme 5: Time until treatment effect occurs The time until the pain symptoms decrease, is the fifth theme that women included in their decision-making process. One woman stated: “So the only option was going into menopause. I said yes, I said I don’t care, I said: how long will it take until I’m no longer in pain?” (FG1). It was indicated during the focus groups that the amount of pain, and its limiting character, helped to determine an acceptable time until effect occurs. If the quality of life was severely limited, a shorter time to effect was being desired. “Then the operation, there I had a huge advantage that the pain was really gone immediately from that, right off the operating table. Of course, you had the wound pain, but that was nothing compared to the pain before” (FG4). If there was a wish to conceive, it was also mentioned that the time until continuing fertility treatment, or the time until trying to conceive again, was also a factor. “For me the duration until effect is important, because yes, we want to waste as little time as possible of course. (FG4). Other items mentioned In addition to the themes mentioned above, some themes were mentioned that did not occur often. For example, women indicated that by choosing surgical treatment, they had a greater sense of being ’in control’. It was also stated that the contact with the care provider, the so- called doctor-patient relationship, partly determines the choice of treatment. The opinion/counselling of the healthcare provider was then considered more than if the doctor-patient relationship was less pleasant. Contact with other patients with endometriosis (or endome - trioma in specific) was mentioned by several women during the focus group as very valuable. Their experiences, effects on treatment and advice were taken into account in the final treatment choice. In addition, it was very striking that during all four focus groups, women indicated that they had felt that they were not ‘being heard’ by both their partner and/or environment and the healthcare provider. Women also mentioned that the relationships they maintained, both with partners and with friends/family, had changed due to endometri - osis. They did not feel like the partner they wanted to be, for example due to pain complaints. In addition, they indicated that they did not always feel heard by colleagues or employers when they had to report sick due to their complaints. It was precisely ‘feeling heard’ by all people involved in the lives of these endometriosis patients that was essential for their quality of life.

In this qualitative study where we have explored motives in the treatment decision-making process for women with symptomatic endometrioma, the following fixed themes were identified: “relief of pain”, “fertility”, “adverse effects or complications”, “recurrence of pain of lesions” and “time untill treatment effect occurs”. These findings align with previous research on women with deep endometriosis, who also prioritized fertility in treatment decisions [ 30 ]. Participants were recruited via the Dutch Endometriosis Foundation, specialized centers, and the Leiden University Medical Center, showing similar results for ovarian endometrioma. All these themes together should be included in the shared decision- making process. Beyond these themes, women emphasized the impor - tance of “feeling heard” by their caregivers, family, and workplace regarding their symptoms and treatment decisions, consistent with earlier studies [ 31–34 ]. This research highlights essential discussion points for counseling, helping caregivers support women in making personalized treatment choices while fostering a sense of being understood. Strengths and limitations A key strength of this study is its focus on women with ovarian endometriomas, rather than all forms of endometriosis. Additional strengths include the diverse study population in age, education, and parental status, as well as achieving data saturation, ensuring no key perspectives were missed. A limitation is that all participants had already made retrospective treatment decisions, which may have influenced their current prefer - ences. However, we believe they accurately recalled the factors influ - encing their initial decisions. The shift to online focus groups due to COVID-19 may also have affected dynamics, though no significant V.B. Veth et al. European Journal of Obstetrics & Gynecology and Reproductive Biology 310 (2025) 113999 4

were reported by participants. Also, literature shows that focus groups can also be conducted digitally and therefore we do not expect any major bias in current study [ 35 ].

This study highlights the themes that women with ovarian endo - metriomas consider when choosing a treatment: “ relief of pain ” , “ fertility ” , “ adverse effects or complications ” , “ recurrence of pain of lesions ” and “ time untill treatment effect occurs ” . These insights are valuable for improving counseling and ensuring that treatment decisions are individualized, allowing for better outcomes and a more patient- centered approach to care. Disclosure Statement The Department of Reproductive Medicine of the Amsterdam UMC location VUmc has received several research and educational grants from Guerbet, Merck KGaA and Ferring not related to the submitted work. V. Mijatovic reports grants from Guerbet, grants from Merck and grants from Ferring outside the submitted work. All authors declare that they have no competing interests concerning this publication. Contribution to authorship All authors have accepted responsibility for the entire content of this manuscript and approved its submission. Ethical approval The study protocol was evaluated by the Medical Ethics Committee of the M ´axima Medical Center, Veldhoven (L19.067-N19.059) and ethical approval was given. CRediT authorship contribution statement V.B. Veth: Writing – review & editing, Writing – original draft, Visualization, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. A. Keukens: Writing – review & editing, Writing – original draft, Methodology, Investigation. A.M.F. Schreurs: Supervision, Investigation. M.Y. Bongers: Supervi - sion. V. Mijatovic: Supervision. J.W.M. Maas: Writing – review & editing, Visualization, Validation, Resources, Conceptualization. Informed consent Informed consent was obtained from all individuals included in this study. Funding This study is part of the SOMA-trial that is funded by ZonMw, a Dutch organization for Health Research and Development, project number 80-85200-98-91041. Declaration of competing interest The authors declare the following financial interests/personal re - lationships which may be considered as potential competing interests: V. Mijatovic reports a relationship with Guerbet, Merck KGaA and Ferring that includes: speaking and lecture fees. If there are other authors, they declare that they have no known competing financial interests or per - sonal relationships that could have appeared to influence the work re - ported in this paper. Acknowledgments We really thank the patients for their time and effort in participating in this research and there honest and open attitude towards our ques - tions and to each other.

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