Health-related decision-making experiences of people with endometriosis: a qualitative analysis

Objective: Endometriosis is an incurable inflammatory condition, characterised by chronic pelvic pain, among other symptoms. Optimal symptom management is dependent on an individual’s preferences, underscoring the need for person-centred care and shared decision-making. Yet research on decisional support needs of people with endometriosis (PWE) is sparse. This qualitative study aimed to explore decisional processes and decision support needs among PWE regarding endometriosis management. Methods and Measures: Australian adults (N = 41) diagnosed with endometriosis were recruited from support communities to participate in focus groups. Open-ended questions prompted discussion about perceived challenges and facilitators of treatment decision-making. Multiple coders thematically analysed the transcribed qualitative data using the template approach. Results: Four themes were identified: (1) Challenges of accessing pertinent, quality information (sub-themes 1a: Inadequate information from healthcare professionals and 1b: Navigating external information sources); (2) Feeling empowered to self-advocate; (3) Balancing costs and benefits (sub-themes 3a: Financial considerations; and 3b: Balancing family needs); and, (4) Emotional toll of decision-making. Novel findings included emphasis by PWE on family needs when making decisions, and reports that decision-making eroded their resilience. Conclusion: Findings highlight difficulties experienced by PWE regarding endometriosis management, indicating a comprehensive decision support resource, such as a patient decision aid, is warranted.

It is now widely accepted that healthcare should be person-centred, that is, it should look beyond an individual’s condition to also take into consideration their needs, values and preferences (Institute of Medicine (US) Committee on Quality of Health Care in America, Citation2001). However, person-centred care is not necessarily the norm, particularly in endometriosis (Fang et al., Citation2024; Strömberg et al., Citation2022). Most definitions of person-centred care acknowledge that shared decision-making is a key component (Hansson & Fröding, Citation2021). In shared decision-making, healthcare professionals (HPs) are recognised as experts in empirically supported treatments, whereas patients are acknowledged as experts on their own bodies (Spatz et al., Citation2017). Although not everyone may initially feel equipped to take part in shared decision-making (Waddell et al., Citation2021), for most people with endometriosis (PWE) a collaborative approach to symptom management is crucial due to the central role of individual preferences and values in guiding treatment choices (e.g. most hormonal medications are ruled out for any PWE wishing to fall pregnant; Chapron et al., Citation2019; Geukens et al., Citation2018). Endometriosis is an incurable chronic inflammatory disease, with symptoms that can include severe and chronic pelvic pain, painful periods (dysmenorrhea), painful sex (dyspareunia), and infertility (Chapron et al., Citation2019). Approximately 14% of biological females of reproductive age have endometriosis (Australian Institute of Health & Welfare [AIHW], Citation2023); and its symptoms, particularly chronic pain, negatively impact quality of life, affecting daily activities, social relationships and sexual functioning (Chapron et al., Citation2019; Sullivan-Myers et al., Citation2023). Endometriosis is also associated with heightened depression, anxiety, and stress (Gambadauro et al., Citation2019), which exacerbate its impacts on daily living and social participation, and negatively affect work and education productivity (Bahrami et al., Citation2017; Nnoaham et al., Citation2011). Given the absence of a cure, endometriosis requires lifelong management of symptoms, and this has traditionally occurred through medical treatments (e.g. non-steroidal anti-inflammatory and/or hormonal drugs) and/or surgery (e.g. removal of endometriotic lesions via ablation or excision, hysterectomy) (Chapron et al., Citation2019). All of these options have different side effects, and offer varying degrees of symptom reduction, depending on the individual (Capezzuoli et al., Citation2021; Ferrero et al., Citation2018). For example, hormonal therapies that suppress ovulation and menstruation are recommended as a first line of treatment, followed by surgery to remove lesions if the medications do not reduce symptoms such as pelvic pain (Allaire et al., Citation2023) but these medical therapies do not reduce symptoms for everyone (Zakhari et al., Citation2021). More recently, there is evidence that therapeutic approaches to managing endometriosis show promise for managing symptoms (Leonardi et al., Citation2020), including pelvic physiotherapy (Muñoz-Gómez et al., Citation2023; Wójcik et al., Citation2022), improving sleep (Li et al., Citation2022), engaging in physical exercise such as yoga (Evans et al., Citation2019), modifying diet (Nap & de Roos, Citation2022) and practising mindfulness (Hansen et al., Citation2023; Moreira et al., Citation2023), but these options are yet to be supported by gold-standard clinical trials. Hence, PWE are faced with complex treatment decisions, and collaborative decision-making between them and their HP should be best practice (Schreurs et al., Citation2022). However, visiting HPs is frequently an unsatisfactory experience for PWE because knowledge of the condition varies widely among clinicians, particularly general practitioners (GPs), who are often the first healthcare professionals PWE visit (Fallon et al., Citation2024; van der Zanden & Nap, Citation2016). Moreover, PWE report that HPs can be dismissive of their symptoms and concerns (Handelsman et al., Citation2023), and judgemental about how they are coping (Cox et al., Citation2003). This may partly explain why one Australian endometriosis study found fewer than 25% of participants were satisfied with how their condition is managed (Evans et al., Citation2022). Consequently, PWE can feel alone in managing their symptoms, and forced into the role of self-advocate (Whelan, Citation2007); a role with which not everyone is comfortable (Facchin et al., Citation2018), raising the question of how PWE can be empowered with knowledge and clarity of direction to effectively collaborate with their healthcare team to find a management regimen that fits their lifestyle and values. Patient decision aids help individuals make informed healthcare choices by providing reliable, evidence-based information about their condition and treatment options, as well as clarifying their personal values, to help guide them towards a decision that best suits them (O’Connor et al., Citation2007). Such interventions can reduce psychological conflict about health-related choices (Stacey et al., Citation2017). The need for decisional support resources for PWE has previously been suggested (Handelsman et al., Citation2023; Metzemaekers et al., Citation2021), including calls for a patient decision aid (Geukens et al., Citation2018; Vercellini et al., Citation2018); however, little is known about the decision-making processes of PWE while managing their condition. Two studies have documented decisional regret following one specific option (i.e. surgery) (Metzemaekers et al., Citation2021; Misal et al., Citation2021), but evidence is lacking more broadly on what PWE see as barriers and facilitators to their endometriosis management decision-making, and how they could be best supported when making these choices. Therefore, this qualitative study aimed to explore the decisional support needs of PWE when choosing treatments to manage their symptoms, as recommended by the international standards for creating patient decision aids (IPDAS; Jacobsen et al., Citation2013). While not everyone feels comfortable sharing their feelings in a group setting (Sim & Waterfield, Citation2019), on balance focus groups were deemed the best data collection method because they enable deeper exploration of participants’ needs and emotions compared to surveys (Márki et al., Citation2022). In addition, the interactive nature of focus groups has been found to have benefits over one-on-one interviews because the social setting can facilitate a natural exchange of ideas that highlights differences and similarities in experiences and beliefs between participants (Krueger, Citation2014; Lander et al., Citation2025). Using focus groups also maximised the number of participants whose views could be canvassed within the timeframe available (Namey et al., Citation2016). Holding these groups online enabled participants from across Australia to take part from the comfort of their own homes, an important consideration for any who may have been in pain, and prior research notes that a large percentage of people are comfortable with internet-based video communication (Dos Santos Marques et al., Citation2021). The research questions regarding decision-making for endometriosis symptom management were: 1) Do PWE feel they participate in decision-making about their symptom management? 2) Which aspects of this decision-making do PWE find most difficult? 3) Do PWE regret choices they have made? 4) What do PWE think could facilitate decision-making in endometriosis? 5) Could a patient decision aid support and facilitate this decision-making process?

and measures This research is reported according to COREQ guidelines (Tong et al., Citation2007), see Supplemental Material 2. Participants Individuals 18 years and over, living in Australia and self-reporting a diagnosis of endometriosis were invited to participate via advertisements distributed (May–June 2023) via online endometriosis consumer organisations (Endometriosis Australia, Endometriosis WA, Qendo). Respondents were taken to an online Qualtrics survey, where they were initially screened for meeting eligibility criteria, and then provided online consent before completing a brief survey collecting demographic information and medical information. No questions were asked in this survey about decision-making or difficulties with decision-making, to avoid narrowing the representativeness of the sample. Of the 667 people accessing the advertisement link, 282 eligible individuals provided consent and contact details. This potential participant pool far exceeded the anticipated sample size requirements (i.e. three to six focus groups with four to eight participants in each) (Márki et al., Citation2022; Metzemaekers et al., Citation2021; Sherman et al., Citation2022), enabling the researchers to conduct purposive sampling, to invite potential participants representing a range of Australia’s demographics make-up (e.g. age, area of residence, education level). There was a very low response rate from invitations to potential participants from minority groups (e.g. Indigenous Australians, non-heterosexuals). N = 41 participated, which was deemed sufficient for a qualitative study (Creswell & Poth, Citation2016). None of the participants had any prior relationships with any of the researchers. Procedure Seven online focus groups of 2–2.5 h were conducted, meeting accepted criteria for the optimal number required to explore a topic (Guest et al., Citation2017; Hennink & Kaiser, Citation2022). For participant accessibility and comfort, groups were held online via Zoom (Howlett, Citation2022) over a two-week period in June–July 2023, during weekdays (two groups), weeknights (four groups) or on a Saturday morning (one group). Between four and eight PWE participated in each group, in line with previous qualitative health studies in endometriosis (Márki et al., Citation2022; Metzemaekers et al., Citation2021; Sherman et al., Citation2022). The facilitator for all focus groups was Author 1 (a middle-aged European Australian female Master’s student trained in psychology), and participants provided verbal consent to be recorded. The facilitator took field notes during the focus groups. Following initial introductions, in which Author 1 outlined her background, including that she did not have personal experience of endometriosis, the facilitator led group discussion, prompted by a set of open-ended questions focusing on information-seeking, decisional support needs, and emotional and mental states when choosing management options (Supplemental Material 3), as recommended by IPDAS (Jacobsen et al., Citation2013). An additional separate question asked participants about their perceived value of a decision aid in this context. Piloting of these questions involved the research team, including two consumer investigators (Authors 3 and 4) and three other members with personal experience of endometriosis (Authors 4, 5 and 8) reviewing and refining their content. Two consumer investigators were affiliated with the leading consumer advocacy organisation Endometriosis Australia. The relevance of the term “saturation” is increasingly being questioned (Braun & Clarke, Citation2021), therefore this study relied on the sufficiency of the sample size (outlined above), and the appropriateness of the data collected in answering the research questions to determine when sufficient data had been collected within our time constraints (Varpio et al., Citation2017). The institutional human research ethics committee approved this study (Reference no: 520231301346445). Data analysis Descriptive statistics for participant demographic and medical data were calculated using Stata statistical software. Recorded focus group sessions were transcribed in Microsoft Word’s transcription function. Transcripts were not returned to participants for correction or feedback because they were a minimum of 50 pages long and we wanted to minimise the time burden of participation. The transcripts were independently checked for accuracy by at least two researchers (three, if there was any clarification required), and de-identified, with each participant given a unique code. Three coders (Authors 1, 5 and 8) employed the template approach for analysis (Brooks et al., Citation2015), following a six-stage inductive method considered ideal for exploratory data (Braun & Clarke, Citation2006). Template analysis is viewed as a structured way to organise qualitative data by creating and organising codes according to an initial set of guidelines, but allows for flexibility through adding, removing and reorganising codes as more data provides new insights (Brooks et al., Citation2015). IPDAS criteria (Jacobsen et al., Citation2013) were used as the basis for this study’s initial coding template, focusing on the following key components of decision-making in healthcare: seeking information about options available, clarifying individual preferences and priorities for symptom management, and weighing up the costs and benefits of available options. Based on the initial coding process we expanded the coding template to include whether or not participants felt they needed more support in decision-making. Data were organised in Microsoft Excel. The steps were: (1) Dataset familiarisation: Authors 1 and 5 read through the transcripts. (2) Generation of initial coding template: Authors 1 and 5 independently identified meaningful clusters of data to generate initial codes from the first two focus group transcripts. (3) Initial theme formation: After comparing and agreeing on draft codes, Authors 1, 5 and 8 coded data from the remaining five focus groups. (4) Author 1 reviewed the similarities and differences among coded items, consolidated them, then sought feedback from Author 5. Author 8 supervised this process to ensure consistency across codes and among coders. (5) Authors 1 and 5 iteratively refined the themes, defining the distinct focus of each one, naming them, and discussing how each answered the research questions. (6) The report was written up using the themes to disseminate the results, illustrated by pertinent quotes from participants. This study was guided by a critical realist ontological perspective (Fletcher, Citation2017), complemented by an interpretivist approach (Olmos-Vega et al., Citation2022). Reflexivity statements (Braun & Clarke, Citation2023) from Authors 1, 5 and 8 are provided in Supplemental Material 4. Due to the highly sensitive nature of these data, they are not publicly available.

Respondent characteristics The demographic and medical characteristics of the focus group participants (N = 41) are displayed in . Focus group findings Four main themes were identified and developed that outlined the main participant-identified barriers to decision-making when choosing treatments to manage endometriosis: (1) Challenges of accessing pertinent, quality information (sub-theme 1a: Inadequate information from HPs; sub-theme 1b: Navigating external information sources); (2) Feeling empowered to self-advocate; (3) Balancing costs and benefits (sub-theme 3a: Financial considerations; sub-theme 3b: Balancing family needs); and, (4) Emotional toll of decision-making. Salient quotes from participants, each identified by a unique code, illustrate each theme and sub-theme. Additional quotes are provided as supporting material in Supplemental Material 5. Theme 1: challenges of accessing pertinent, quality information A key concern of focus group participants was finding information they could understand and trust, and that was tailored to their situation, so they could make an informed decision. All participants (N = 41) reported they had received inadequate, misleading or inaccurate information from HPs, ranging from GPs to specialised endometriosis surgeons, leading them to self-educate on the condition and its potential management options. Sub-theme 1a: inadequate information from HPs Many participants reported being desperate to learn about endometriosis and its management following their initial diagnosis, but said they received little helpful information from their HPs: My first and only information came from the gynaecologist, who handed me a pill and told me that was the solution. So no actual information about the condition or the range of treatments available. I was 12 so, from memory, he kind of spoke to Mum. And she’s told me since then that she had no idea. (ID065) [The GP] said ‘that’s rubbish advice’. So then I’m like, ‘well, who do I trust? A GP, a surgeon, a junior doctor? I don’t know’. I feel like just burying my head in the sand and going, ‘you know what? I’ll just let it be’. (ID216) Honestly, I find it pretty hard to trust any doctors now, after some people I’ve seen that just pretend like they know what they’re talking about. I’ve just mostly talked it over with my GP, who I do have a lot of trust and faith in – not that she knows much about the condition, but just as a whole she knows me well. (ID255) [At my initial appointment I] didn’t feel like I could ask a lot of questions because you were just info dumped … It led me to do more research. But to go and follow up with the gynaecologist, it’s a big trip for me. (ID166) I don’t always have the … privilege of having appointments, a follow-up appointment in a month if I need it … and quite often I am pushed to make a decision right then and there … I don’t have time to go away and research it. (ID163) Some commented that HPs appeared too narrowly focused, and unwilling to recommend other options, particularly allied health and complementary therapies, leading participants to use word-of-mouth recommendations and their own research to discover alternatives. Others reported feeling that HPs did not give them all the information they needed: “I don’t feel like doctors, you know, give you the whole story,” said ID044. “Doctors are so pigeonholed to their one thing … There are other options,” ID227 stated. Several indicated valuing and desiring guidance from their HP that was tailored to their specific situation, with ID019 sharing: “What I feel is lacking a bit is his professional opinion on what my personal circumstance would be, what would be the best option for me?” Sub-theme 1b: navigating external information sources The perception that they had received inaccurate, incomplete or non-personalised information led all participants to undertake their own research on endometriosis, its treatments, and HPs in the field. Most turned to the internet: I think there’s a lot of good information online. You just have to be able to separate misinformation from the well-researched, valid, evidence-based type. Thank God for the internet, because without it, I wouldn’t be able to do my research and reach out to the right specialists. (ID280) In a bid to try to navigate their way through online resources, all participants reported looking to social media endometriosis communities for education, support and clinician recommendations, observing that it was only others with endometriosis who understood what they were going through: My experience is that [some HPs] can’t be trusted. It was those [Facebook] chats that really helped, informed me. It’s only people with endo that I’ve really felt truly supported by. (ID311) [Social media communities are] very emotion-charged. I’m finding myself staying away from those groups for a while because people are more likely to talk about treatments if they didn’t work. (ID156) I got hooked up with some amazing resources from the UK. And I understand they’re obviously decades ahead of Australia in terms of legislation. Like, only excision is used to treat endometriosis is my understanding, or that is like the gold standard. (ID311) Theme 2: feeling empowered to self-advocate Dissatisfied with the information and/or treatment provided by HPs, most participants, armed with the knowledge they had gained from self-education, reported advocating for the treatments they wanted and their doctors of choice. Only one participant, who had been diagnosed within the past six months, had not actively sought information on other treatments and/or different doctors, and two said they trusted their medical team to do what was best; the remainder (n = 38) reported exerting some control over their endometriosis management. ID041 put it simply: “I don’t want to fight with professionals, but also, it’s my body and I have to live in it. They see me once, maybe, in their whole life.” Many reported feeling forced into the role of self-advocate, even when they did not feel equipped for it, following years of mounting frustration and anger: After decades of fighting, I think you become a little bit more blunt, a bit more aggressive with what you’re after … I think you become angry at some point as well and start advocating for yourself a lot more. (ID106) Participants also frequently perceived a mismatch between their own priorities and what their doctors felt was best, leading to anger that was still palpable during the focus groups, despite the events in question taking place sometimes many years in the past. Speaking about one specialist’s focus on fertility issues when hysterectomy surgery had been requested, one noted: I can’t get any headway because they go, ‘but what if?’ And I’m like, ‘I’ve made the decision, please just trust that I know my own mind, move on for the next bit. I just want to not live in pain’. (ID096) I just wanted everything out, but that’s a battle in itself. When you reach that stage, particularly if you’re childless, apparently you can’t make that decision for yourself without thinking about hypothetical partners that you might have and who might want children. I’m like, ‘hmmmm it’s not their body. My choice’. (ID156) A lot of it seems to be wanting to just treat symptoms and not actually treat disease. It seems to be the consensus, especially in this country at the moment, to just treat symptoms alone and to not do surgery. It feels like everybody’s trying to back away from surgery as an option. (ID044) Some described seeking out someone with whom they could form a strong therapeutic alliance: I’ve had so many specialists over the years, many different specialists. I’ve had specialists that I’ve trusted and I would keep going back to, others that I don’t trust so much. (ID 093) Theme 3: balancing costs and benefits In making decisions about options for managing their endometriosis, participants described assessing the pros and cons of each according to a complex range of factors — weighing up the impact on finances, the needs of family and friends, employment issues, and individual priorities. Two distinct sub-themes were identified here: Financial considerations, and Balancing family needs. Sub-theme 3a: financial considerations Cost played a significant role for most in choosing management options, primarily in determining whether they could afford private healthcare or used the public system. For those whose ongoing pain was unbearable and who could find the necessary funds, lengthy public hospital waiting lists sometimes forced a choice. My last two surgeries I’ve paid for, which was really expensive. It’s not money that everyone has, and it’s not money we necessarily had, but because I needed it for my quality of life … and I needed it to be a working mum, we had to pay [for private care]. (ID350) Several participants said the uncertain nature of treatment outcomes increased their stress about whether to fund a certain treatment. “Treatment is not a one-size-fits-all,” said ID280, “so it’s hard to know what you should do. And sometimes you just don’t want trial and error because it costs a lot of money.” For rural participants, arranging flights and accommodation, having to take extra time off work to travel, and finding childcare added to the mental burden of choosing a treatment, and these added travel-associated costs were not covered by private health insurance or the public healthcare system. However, despite openly discussing this extra challenge, no participant talked about not finding the funds required. Some detailed the lengths they went to in order to save up: Look, I work really, really, really hard and I’m busting my bum. I’m even picking up cans and bottles off the street to grab the extra 10c, and I’m putting all my cans and bottles together and sticking it towards my flights and accommodation and a doctor’s appointment [in a major city]. (ID333) Having to pick and choose those things can be difficult because you’re trying to work out ‘what’s the most important thing in terms of my care and requirements right now for my disease?’ If I need physio to function better, I’m going to pay for physio over needing to go back and see a psychologist because I need some mindfulness help. (ID044) If you are looking at more of those holistic avenues, that all starts to add to the cost … [and sometimes you don’t have] the time to have a really good regime and stick to it. (ID468) Sub-theme 3b: balancing family needs Factoring in family needs when deciding about treatments was mentioned in every focus group, almost as frequently as financial concerns, with participants describing their need to balance the burden of being unwell versus the costs of treatments, in terms of money, time and side effects affecting not just themselves but their families as well. One newly diagnosed mum (ID415) described her pain only in terms of how it affected her four young children: “I want to be more present for them, I feel like the worst mother. I’m just always incapacitated with pain and fatigue.” The financial cost of paying for treatment was also often framed by how it affected the family unit. One mother-of-two, who emphasised that her husband was very supportive, stated: I do feel a little bit in debt because I had a lot of time off work to recover from that surgery, and it did financially cost us a lot, at least $15,000. And that’s a lot to spend on one person in a family of four. (ID166) I brought [hysterectomy surgery] up with my doctor about two years beforehand, but I said, ‘I’m willing to try everything else, just in case that does work, because I’m an only child, mumma bird and my dad want biological grandkids’. (ID038) Theme 4: emotional toll of decision-making “Overwhelmed” was the word most often used when participants discussed making decisions about managing their endometriosis. Despite almost all reporting they had at least one very supportive partner, parent, friend or healthcare professional they could lean on, most said they made symptom management-related decisions by themselves: It’s all that indecision. And it does feel lonely because no one else can make a decision for you. You can listen to other people, but in the end, whatever you decide is going to affect your body in some way or another. (ID046) [I was] completely overwhelmed to the point where it affected my mental health … Anxiety more than anything, about what was coming, what had been, what might come, all that stuff that goes with the unknown around the disease and the treatment. (ID110) The uncertainty of outcomes of any endometriosis treatment, and a feeling of failure when a treatment did not work, preyed heavily on the minds of participants. ID216 noted wanting to “bury my head in the sand” and not make any decision at all; several described feeling “stuck” while making choices; and ID227 remembered crying day after day because the process of decision-making was so difficult. For some, trying a treatment that did not work led to a downward spiral. “Each failed treatment can kind of chip away at your resilience and your trust in the healthcare process and just in people in general,” commented ID280. This sentiment was echoed by others, who said it became harder to stay positive with each new option attempted: What’s overwhelming about it is you have to change your entire lifestyle around this condition … So when something doesn’t work, it’s kind of devastating. And then that affects your mental health, which makes it harder to have the capacity to go and research things again. (ID072) You can’t have the mental side of it and the physical side of it without impacting each other. The pain causes mental side effects of having, you know, depression, everything, and all the mental symptoms worsen the physical symptoms of endo. (ID032) When asked if they regretted any symptom management decisions they had made, most (n = 34) stated they wished they had taken control of their treatment earlier: “I do constantly regret that I let myself be pushed around for so long,” said ID065. “In hindsight, I suppose my regret was not really pushing for other options that could have been available,” agreed ID146. Just under half (n = 20) reported regret over giving in to what they felt was pressure from doctors to opt for a particular treatment, be it medication or surgery: The doctor put me on [hormonal medication] and I just felt terrible, I got very depressed, very anxious. I wasn’t myself and [the HP] was just ‘try it for a bit longer, it takes a few months to kick in’. But I couldn’t live like that, I have children and a life. So I really pushed to come off that and I felt way better mentally. Probably more pain, but better mentally. (ID173) Need for a patient decision aid After having the concept of a patient decision aid explained by the focus group facilitator, participants were mostly enthusiastic about how such a resource could help the endometriosis community. While some questioned whether it would help to make more reluctant HPs embrace shared decision-making — “I feel a subset of doctors will stonewall it,” said ID163 — and others stressed the need to ensure information was presented in a way that did not overwhelm users, the majority enthusiastically welcomed the idea of having access to an unbiased tool that listed the pros and cons of all valid treatments to empower them to better advocate for themselves. Even reluctant self-advocates saw the benefits: The only problem I see is I get really nervous taking advice to my healthcare professionals because I think, who am I to question them? But if it’s evidence-based research like you said there, then I feel like that problem could be eliminated. So no, please bring it on. We need more help. (ID216) If it’s available at a GP surgery … guide them through … they can also be part of the process … help their patients to access this service while they’re in the room. (ID93) “I think it would be good for family members to read it as well. My family has no idea about [endometriosis]. Even my recent surgery, they sort of knew nothing about it.” One participant implied that some consideration of managing stress during decision-making could be incorporated into such a support tool, saying: “Yes, people will get to access information quicker because it’s all there, but I don’t know if it helps with decision-making when you’re in a state of fear.” (ID227) Some were concerned for PWE, such as non-English speakers, who might still “slip through the cracks” (ID093), while others, including one from a South-East Asian background, believed having a single, easy-to-digest resource amalgamating up-to-date scientific research would be a benefit for traditionally disadvantaged groups: … because endo is such a tricky disease, ANY information that is backed up with valid research would help the individual, particularly those in lower socioeconomic groups or who have a language barrier, because they have less means of getting to the correct resource, so this will certainly help them. (ID380) If it was something that was available to me when I started this journey, I would have been all across it and probably been in a different position in terms of my own advocacy. (ID163)

This study confirmed that PWE find engaging in collaborative decision-making extremely challenging, and identified numerous barriers and facilitators to the process. The challenges of accessing pertinent, quality information were mentioned by every participant, in line with previous research showing that most PWE take it upon themselves to seek out more comprehensive or more personalised information on endometriosis and its treatments (Holowka, Citation2022; Whelan, Citation2007). Participants reported that medical HPs tended to be reluctant to suggest allied health or complementary medicine management approaches, despite promising evidence for such therapies [e.g. cannabis (Carrubba et al., Citation2021); sleep hygiene (Li et al., Citation2022); yoga (Evans et al., Citation2019); diet (Nap & de Roos, Citation2022); pelvic physiotherapy (Muñoz-Gómez et al., 2023; Wójcik et al., 2022); practising mindfulness (Hansen et al., Citation2023)]. Despite feeling poorly informed about these alternative approaches (Adamietz et al., Citation2021), self-management strategies are used by the majority of PWE when medical treatments fail to satisfactorily ease their symptoms (Armour, Sinclair et al., Citation2019). Lack of awareness about treatment options was particularly noted by the six participants who had been diagnosed during the past year. Despite endometriosis treatments frequently offering uncertain outcomes (Kalaitzopoulos et al., Citation2021), feeling well-informed about a treatment has been shown to decrease decisional conflict and decisional regret in patients across a wide range of healthcare decisions, even if treatment outcomes are sub-optimal (Becerra Pérez et al., Citation2016). These findings highlight the need for a reliable information source detailing all valid treatments for endometriosis, and the full range of potential outcomes of each treatment. Disparities between information gathered outside of the consulting room and the knowledge and care provided by clinicians was reported to be a major cause of distrust in HPs, consistent with prior research demonstrating that many PWE have experienced at least one prior negative relationship with a physician (Márki et al., Citation2022). One possible contributor to this was participants’ reported irritation at what they perceived as HPs taking too long to understand their way of thinking about their endometriosis symptoms, and particularly their perceived need for surgery, which sometimes arose from reading overseas websites which pushed the view that excision surgery was the pinnacle of endometriosis treatment. Previous research has found that medical HPs’ emphasis on preserving fertility over the management of pain, or vice-versa, can be at odds with PWE priorities (Metzemaekers et al., Citation2021; Young et al., Citation2020), which was confirmed in these groups. However, this study’s participants also described delaying seeing a medical specialist for many years, after initially being told their period pain was normal and advised to come back when the pain worsened, or they planned to conceive. Upon returning with unbearable pain, and an expectation they would have surgery, they faced waiting periods as HPs explored conservative approaches before contemplating surgery, a situation also noted previously by GPs (Fallon et al., Citation2024). Current guidelines for treating endometriosis recommend delaying surgery for as long as practicable due to possible complications (e.g. adhesions) and the likelihood of lesions recurring (Saraswat et al., Citation2018; Zakhari et al., Citation2021), meaning doctors following the evidence try more conservative options first. However, this mismatch of priorities and timelines between PWE and HPs could be creating conflict and diminishing collaboration. While it is noted that there are limits on shared decision-making, for example if there is no evidence for an option preferred by a patient, if there are clear superior alternatives, or when the individual has lowered decisional capacity, a clinician who has a good therapeutic alliance with their client is in a better position to clarify why a preference may not be optimal (Elwyn et al., Citation2023). We believe an independent patient decision aid that aims to minimise such informational disparities could potentially improve HP and PWE knowledge, and boost the therapeutic partnership so vital to person-centred care (Baier et al., Citation2020). Prior research has documented the financial cost of endometriosis (Armour, Lawson et al., Citation2019; Soliman et al., Citation2016). This study extended these findings through the theme of Financial considerations, by identifying that deciding whether a treatment was something they could afford — particularly if the outcome was uncertain — was a source of considerable conflict, sometimes leading to anxiety and depression. Cost was also noted as a major consideration in deciding whether or not to use psychotherapies, and complementary and allied health therapies, as these were regarded as an unaffordable luxury by many. Weighing up time commitments for these management options also figured in decision-making for participants. However, many lifestyle approaches (e.g. diet, exercise, mindfulness) are low-cost and do not require extensive therapist sessions (Leonardi et al., Citation2020), underscoring the need for a decision support tool that could help PWE navigate a comprehensive list of valid management options. In the Feeling empowered to self-advocate theme, many participants reported having little opportunity to participate in collaborative decision-making, particularly due to limited consultation time with HPs, which was most evident in the public system. One PWE summed up the view of public healthcare users when describing a “take it or leave it” (ID163) attitude from their doctors that was anathema to a collaborative decision-making process. Both public and private patients reported receiving surgery (i.e. ablation) or medications (i.e. hormonal) that were not their preferred or desired options, experiencing a combination of poor symptom relief and/or unwanted side effects, a concern previously reported by PWE (Metzemaekers et al., Citation2021). This led them to advocate for their needs by seeking out a different specialist or, if they could afford it, switching from public to private healthcare. This theme was further characterised by descriptions of active roles taken by participants when communicating with HPs, using emotive words such as a “fight” or a “battle”, seemingly at odds with the tenets of person-centred care and shared decision-making (Hansson & Fröding, Citation2021; Montori et al., Citation2023). For rural participants, distance from HPs limited their treatment options. All found a way to access medical specialists as needed, but regular visits to allied health or complementary therapists were often not feasible. Consistent with previous endometriosis research (As-Sanie et al., Citation2021), participants reported that pain and/or fertility issues were their primary motivations driving treatment-seeking and related decision-making. However, our data revealed other factors that exerted influence on these decisions beyond physical concerns, including the heavy emphasis placed on family considerations, exemplified in the sub-theme of Balancing family needs. Many reported that how potential recovery times following surgery, or medication side effects (e.g. mood swings) would impact the broader family were critical considerations in their decision-making. Moreover, the costs of different management options were perceived as being a drain on family finances, inducing feelings of guilt in participants and influencing their subsequent decision-making. Future research should explore ways for decision support interventions to target these feelings of guilt associated with fulfilling family roles, given the demonstrated link between guilt, depression and anxiety in this context (van Barneveld et al., Citation2022). This could simultaneously facilitate decision-making and improve the overall wellbeing of PWE. Participants discussed the Emotional toll of decision-making at length, recounting times when they had been depressed and anxious because of their search for an elusive treatment to ease their relentless pain. Almost all described family members as being supportive, yet most indicated feeling alone in making ultimate treatment decisions, and it was repeatedly stated that only others with endometriosis understood what they were going through. For this reason, social media communities were cited by almost all participants as a major source of support in endometriosis decision-making. This is not uncommon in chronic conditions, with virtual communities making people feel less alone, and providing a valuable space for information sharing (Holowka, Citation2022). The negative skew of social media content was cited as a concern by some participants, reflecting previous research findings (Goel et al., Citation2023; van den Haspel et al., Citation2022); and several of these virtual communities were based in countries other than Australia, offering advice about very different healthcare systems. These limitations further highlight the need for a trusted source of valid localised information, and a support tool structured specifically to explore individual values and preferences, as a patient decision aid would. Most participants reported high levels of conflict regarding treatment decision-making, stating they felt “overwhelmed” by this process. Conflict was attributed to the vast range of available management options, combined with insufficient HP support and uncertainty of treatment outcomes in their individual case. It is widely documented that many PWE try numerous therapies before finding one that works best for them (Armour et al., Citation2022), and some participants noted this trial-and-error approach was challenging, saying each treatment failure diminished their hopes and motivation to try a new approach. Participants attributed much of their anxiety around decision-making to the uncertainty of treatment efficacy when weighed against the investment of money, time and hope. This was compounded by the self-doubt many participants experienced following years of feeling dismissed by HPs. Several participants stated that the stress of assessing and choosing treatments had eroded their resilience. The link between chronic pain and resilience is well-documented (Becerra Pérez et al., Citation2016; Hassett & Finan, Citation2016), including in endometriosis (Lubián-López et al., Citation2021), but these findings are the first to suggest that endometriosis management decision-making may directly affect this psychological capacity to cope. Since diminished resilience is associated with anxiety, depression and decreased life satisfaction (Romaniuk & Oniszczenko, Citation2023) in PWE, research looking at ways to maintain high resilience is warranted. Moreover, these mental health difficulties were perceived by a few participants to adversely impact their ability to make sound decisions, reflecting prior research in medical decision-making (Becerra Pérez et al., Citation2016; Sheehan et al., Citation2007), suggesting that a support tool that aims to reduce decisional conflict could potentially also improve psychological wellbeing. Taken together, these data suggest that many PWE find it highly challenging to make decisions about managing endometriosis, and feel alone and overwhelmed when doing so. For many, feeling conflicted during the management decision-making process was underscored by anxiety and depressive symptoms. From these qualitative analyses it is not possible to differentiate whether these aversive emotional states were due to ongoing endometriosis symptoms (e.g. pain), the uncertain outcome of available options, the disappointment of treatments that did not work, or the need to revisit the management decision-making process repeatedly. Most likely it was a combination. Future longitudinal research is needed to identify how these different sources contribute to the experience of psychological distress of decision-making about endometriosis management. It should be noted that three participants had been content to leave decision-making in the hands of their medical teams, reflecting research showing that preferred decision-making role differs across individuals, and can fluctuate across time and depending on the decision required (Keij et al., Citation2021). However, the vast majority of this study’s participants stated a preference for having a say in their endometriosis healthcare decisions, even if that had not been their natural inclination immediately post-diagnosis. Further, research reports that many people who are initially reluctant to actively participate in shared decision-making change their stance when given appropriate support (Keij et al., Citation2024), and it has been argued that even those who choose not to play an active role in decision-making about their healthcare should make that choice only after understanding that their contribution is valuable and there are no right or wrong answers (Muscat et al., Citation2021). These qualitative data clearly indicate that decision-making is a fraught and psychologically difficult process for PWE, and it is one with which they need to re-engage as they live with this condition. Therefore, a resource such as a patient decision aid that could support PWE with decision-making could potentially make a positive difference to their physical and psychological health, even for those who choose not to actively participate in shared decision-making. Some limitations of this research need to be noted. Firstly, recruiting via the social media pages of endometriosis consumer organisations likely resulted in the sample largely comprising individuals who already utilised education and support resources provided by those groups, therefore participants could represent people who may have felt more informed and more empowered to self-advocate in shared decision-making than the average PWE (Shoebotham & Coulson, Citation2016). Regardless, the need for patient empowerment was clear, suggesting that others not already engaged with such online communities may be in even greater need of support for treatment decision-making. Despite purposive sampling, almost all participants (n = 39) rated their symptoms as being moderate or severe, and, while it is not unusual for people with a higher symptom burden to take part in research (Handelsman et al., Citation2023), it does raise the possibility of skewed results. In addition, only seven of the focus group participants had been diagnosed during the previous year, the others relied on memory to discuss decisions they had made up to 32 years earlier, leaving the results open to recall bias, whereby participants may not have accurately or completely remembered their decisional processes at the time of making their choices (Jager et al., Citation2020). However, endometriosis is a lifelong condition requiring PWE to make management decisions repeatedly over many years as their symptoms and circumstances change, so those who had been diagnosed many years earlier were able to make valuable contributions. While online focus groups offer many advantages over in-person gatherings (Howlett, Citation2022), this style of data collection may have precluded people who did not feel comfortable using technology or sharing their feelings in a group setting (Sim & Waterfield, Citation2019), and data collected in focus groups can reflect social desirability bias (Bispo Júnior, Citation2022). Further, we chose not to return transcripts to participants for checking, because we wanted to minimise the time burden of them taking part in the study, and these transcripts were at least 50 pages per focus group. In addition, much of what is said in a focus group is the result of an interplay between all participants and the moderator, so sending out individual quotes to their speaker could lack context, while sending out complete transcripts raised issues of confidentiality between participants (Sim & Waterfield, Citation2019). At least two coders checked each transcript, plus a third if there were any discrepancies between the first two; but COREQ guidelines recommend returning transcripts to participants. Although we welcomed both positive and negative perspectives from participants, and that was evident in the data we gathered, with hindsight we accept it is possible that our opening introduction to focus groups may have cued people to think more about the negatives. Mistakes in creating the survey resulted in the demographics questions of gender and race being left off the questionnaire, which raises the possibility of valuable data being omitted. Lastly, because of the nature of qualitative studies, researcher bias must be considered. In a bid to lay bare biases and beliefs of the researchers who collected and analysed data, reflexivity statements are in Supplemental Material 4. In conclusion, these findings highlight widespread difficulties experienced by PWE in making important decisions about symptom management. These difficulties were attributed to a range of factors, including: receiving inadequate and conflicting information about potential treatments from HPs; a perceived lack of trustworthy and accessible information available on which to base their decisions; feeling alone, overwhelmed and psychologically distressed during the decision-making process; and having to balance their medical requirements with the needs of family members, including budgetary considerations. This highlights the need for an intervention such as a patient decision aid to support PWE management decision-making, by providing evidence-based information in an easy-to-digest format that would help them navigate the wide range of options in a way that would minimise their psychological distress (O’Connor et al., Citation2007) Focus group participants were very receptive to the possibility of such an aid, noting it was something that would have greatly eased their confusion and concerns when first diagnosed, and also something they could use repeatedly throughout their lifelong endometriosis journey. Given the importance of the consumer voice in the development of any patient-focused supportive interventions (Vaisson et al., Citation2021; Yardley et al., Citation2015), any future decision support intervention should be co-designed with consumer and HP input, to ensure content and support meets the decision-making support needs of this underserved community, with the goal of equipping PWE with the confidence and knowledge to fully engage in shared decision-making. Supplemental material Supplemental Material Download Zip (828.3 KB)Supplemental MaterialAcknowledgements The research team would like to thank Endometriosis Australia, Endometriosis WA and Qendo for their help with recruiting participants, and the participants themselves for generously sharing their stories. Disclosure statement No potential conflict of interest was reported by the author(s). Data availability statement Given the small sample and the relatively re-identifiable nature of demographics (e.g. age, time since diagnosis, type of residential location) these data were deemed highly sensitive and not to be made publicly available. Additional information Funding

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