Unmet needs of Australians in endometriosis research: a qualitative study of research priorities, drivers and barriers to participation

Unmet needs of Australians in endometriosis research: a qualitative study of research priorities, drivers and barriers to participation | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Unmet needs of Australians in endometriosis research: a qualitative study of research priorities, drivers and barriers to participation Nora Giese, Emilee Gilbert, Alexandra Hawkey, Mike Armour This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-2783391/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions and therefore determining where to prioritise these limited funds is vital. Research priorities may differ between affected individuals and clinicians/researchers. The aim of this research project is to explore research priorities and determinants of endometriosis research from the perspective of people with endometriosis in Australia. Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently wanted research on treatment options for symptom management, with many prioritising non-hormonal treatments including medicinal cannabis and complementary medicine. Others prioritised research on causes of endometriosis to assist with prevention and eventual cure of the disease over research on treatments. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important included the ability to easily access testing centres (e.g. for blood tests) and copies of test results, as were automated data collection reminders and easy data entry to record measurements. Research incentives for younger endometriosis patients and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation. endometriosis research priorities focus groups unmet needs Australia Background Endometriosis affects around 1 in 9 women and those assigned female at birth in Australia by the age of 44. 1 Due to stigma and silencing surrounding the menstrual cycle 2 ,3 and difficulties with diagnosis, 4 it is estimated that people in Australia can experience a diagnostic delay of between 6.4 to 8 years. 5, 6 Endometriosis causes significant pain and fatigue 5 and can negatively impact all aspects of an individual’s life, including work, education, sexual and social relationships, self-identity, and body image. 5, 7, 8 It also has a significant cost of illness burden of over 9.7 billion dollars per year in Australia. 9 Despite the significant personal and societal burden, endometriosis research has been under-funded and under-researched when compared to other chronic conditions with a similar prevalence and health-care burden. 10 This has led to limited understanding of the disease aetiology and slowing innovations in diagnostic and treatment. 11, 12 In Australia, the National Action Plan for Endometriosis, launched in 2018, has three major goals: (i) Awareness and education, (ii) Clinical management and care, and (iii) Research 13 . In order to meet goal three within the constraints of limited funding, the setting of research priorities is vital. 14 Endometriosis research priorities have been developed in the past. 10,12,15-18 The most comprehensive publication on endometriosis research recommendations reported the findings of the 3 rd International Consensus Workshop on Research Priorities in Endometriosis in 2014 with 60 endometriosis investigators from 19 countries. 17 One hundred and seven research priorities were recommended, concerning all key areas of endometriosis research: pathogenesis and pathophysiology, symptoms, diagnosis, classification and prognosis, disease and symptom management, low-income countries and low-resource settings, and research policy. While this compilation of endometriosis research topics provides a comprehensive overview on the aspects of endometriosis that are not well understood or require development, it remains unclear which of these 107 recommendations should be prioritized according to patients’ needs. Previous research priority setting efforts have mostly included researchers and/or clinicians, with only one reporting consumer involvement. 10 The importance of consumer involvement in health research is increasingly being understood. 19 Patient centred medicine demands consumer involvement in health research, an issue debated and advocated for by bodies including the Cochrane collaboration, the Consumer’s health forum of Australia, and the UK’s National Institute of Health and Clinical excellence. 19, 20 Endometriosis research priorities identified by consumers often differ from those developed by clinicians and scientists in key areas. 21 For example, consumers and family members were more likely to prioritize education/awareness, emotional impact and comorbid conditions, while healthcare professionals and scientists are more interested in cause/pathology or risk factors for endometriosis, diagnosis and screening, treatment, and fertility. 21 Another challenge for those with endometriosis is the significant pain and fatigue caused by the disease, as well as the unpredictable nature of the pain, known as ‘endo flares’. This can act as a barrier to consumer participation in research. This can be particularly difficult when data collection utilizes in-person measurements that are tied to particular timepoints as an unexpected endo flare or the arrival of the menstrual period can cause significant pain, potentially leading to substantial dropouts or missing data. 22 Considering the importance of consumer led priority setting, this research aims to explore what people with endometriosis perceive to be unmet research needs, and how endometriosis research can be tailored to meet consumer’s specific needs. By prioritising the voices of those with endometriosis we are better placed to understand which research topics should be prioritised, and how research can be conducted so that people with endometriosis are empowered to take part in research that interests them. Methods A qualitative design consisting of focus group interviews was used to explore the research needs of people with endometriosis, and in particular future research priorities. Ethical approval was obtained from the Western Sydney University Human Ethics Committee (Approval H13131) in February 2019. Participants Participant were eligible for inclusion if they were aged over 18, currently lived in Australia, and had a diagnosis of endometriosis via laparoscopy. Recruitment occurred via social media postings made in February and March 2019. Australian endometriosis support organizations including Endometriosis Australia and QENDO posted the research invitation on their Facebook and Instagram pages, with a combined follower count of over 45k people. Participants were reimbursed $20 AUD for their time via a gift card at the completion of the study. A total of 30 people participated in the focus groups analyzed as part of this research project. Participants were grouped in age ranges of 18-24 (n=7, 23%), 25-34 (n=14, 47%) and ≥35 (n=9, 30%) years. Most participants identified as Caucasian (n= 24, 80%), were in heterosexual marriages (n =19, 63%) and did not have children (n=25, 83%). Over half worked in fulltime employment (n=18, 60%) and had a minimum of a university undergraduate degree. See Table 1 for further demographic data. Procedure Four focus groups with 6-9 people, totalling 30 people, with a diagnosis of endometriosis were conducted in March 2019, audio-recorded, and transcribed verbatim. Focus groups were conducted via the online platform Zoom and lasted 70-90 minutes. Given that priorities and barriers may depend on age, focus groups were divided into the following brackets 18-24, 25-34 and ≥35 years old. Questions addressed the areas of endometriosis research that need further investigation, why these are important to participants, and barriers to participating in a research project on endometriosis. See Additional file 1 for complete schedule. This paper only focuses on the questions related to priorities and barriers to research participation. Additional analysis will be published separately. Analysis A qualitative content analysis was used to ascertain patients’ views on research priorities. This method is a form of analysis that allows researchers to systematically transform large amounts of qualitative data into an organized and concise summary of key results. 23 For data analysis, an inductive approach was used following the two-phase, eight step process described by Roller (2019). 24 Phase 1 included the data generation and coding. Familiarization with the content of transcripts was then gained through repeated reading. Each of the four focus group transcripts formed one unit of analysis. Codes were key ideas or statements identified in the data by two researchers independently from each other to foster reliability (NG and EG). The codes were discussed amongst researchers until consensus was achieved. The final codes were applied to all four transcripts by author one (NG). Coding and data analysis were carried out manually. Statements within the transcripts were labelled with the corresponding code by using the Microsoft word comment function. Phase 2 contained the data analysis with categorization and interpretation (NG, EG and MA): Key codes were listed, grouped together and labelled as a thematic category in a separate Word-document. The categories were discussed amongst all researchers until consensus was achieved. In the final step, interpretations and implications were drawn and discussed amongst all researchers. To quantify participants’ statements, codes were word searched for across participants accounts. This process involved checking each participant to see whether they made a statement about a specific code. An Excel spreadsheet was used to either note each participant’s statement about the specific code or to note if the participant did not make a statement about that code. A count was then made of how many participants made a statement about that specific code. Representative quotes from each code are presented below, followed by the participant pseudonym and age range. Results Two categories were developed from the data: (i) ’Unmet research needs’ and (ii) ‘Motivators and barriers to participation in endometriosis research’. Unmet research needs: Diagnosis, treatment, and cure Participants described three main research areas that require exploration in future research: diagnosis, treatment, and the development of a cure. Eleven out of 30 participants described how getting an endometriosis diagnosis was a problematic process. This was due in part to the prolonged time to diagnosis and the invasive nature of laparoscopic surgery, which has been historically required for a confirmed diagnosis. Participants reported that an endometriosis diagnosis ‘seems to always be the last [option]’ (Caroline, ≥35), with all other possible physical and psychological causes ruled out prior to being offered a laparoscopy. As Pam (25-34) said, ‘I had a healthy appendix taken out, and I was told I was stressed’. Gloria (≥35) explained the frustration she experienced saying, ‘If you present to a doctor or gyno with these sorts of complications and pains, to not just be put down as, “Oh it’s this, oh it’s that. Oh, we can’t tell unless you have a laparoscopy.”’ For Wendy a diagnosis of endometriosis only came after having been repeatedly mis-diagnosed with other conditions including a urinary tract infection and gonorrhea: I think a bit more research into that [diagnosis of endometriosis] would be good for when a woman just says she’s got pelvic pain – I’ve just been told so many times: ‘Oh, you’ve got a UTI [urinary tract infection], you’ve got gonorrhoea, you’ve got all these things’, and then the tests comes back and they: ‘Oh, you don’t have any of that’. It’s hard. (Wendy, ≥35) Pam (25-34) explained that a diagnosis allowed her to know that ‘you’re not insane, and all this isn't just in your head, there’s actually something, would be a really good place to start’. Early detection could ameliorate the feeling of uncertainty around the perceived legitimacy of symptoms prior to the diagnosis. For Lana (25-34), this uncertainty was around the outcome of surgery, and the hope of receiving a diagnosis given the significant cost associated with such surgery. I also remember leading into my first surgery that I was also really nervous that I was going to be outlaying all of these costs of the surgery and all of those associated things – only to not know, if I was able going to be getting a diagnosis of any sort. I remember waking up in surgery and asking: ‘Did they find anything?’ Because I would have felt guilty spending our money on all of that, only to find out that, no, there was nothing there. (Lana, 25-34) Participants felt that ‘early intervention is really key’ (Jenna, 25-34) as it is likely to change the treatment trajectory resulting in better health outcomes, including a reduction in emotional burden. As Jan described: I didn't get diagnosed ‘till I was 34, and that was after years of infertility and pregnancy loss. If I had known about this 10 years ago because someone did a blood test or a scan of some sort, it could have saved me all of that trauma. (Jan, 25-34) Participants stated that early detection could include genetic screening or the formal collection of early symptoms beyond pelvic pain alone. Gloria explained feeling not ‘listened to’ when describing her endometriosis symptoms to healthcare professionals and thus saw value in a pre-laparoscopy test that may indicate endometriosis: There is enough people – there’s one in ten women, so there’s a lot people presenting with all these conditions, there needs to be something that they can do, a test other than just the laparoscopy. If they could research into that so you could see that, yes, you are a candidate for endometriosis, so now let’s do a laparoscopy, but at least be listened to prior to just have the laparoscopy. (Gloria, ≥35) Twenty out of 30 participants described the current endometriosis treatment as limited, with potentially effective treatment such as surgery not always having the desired results for pain-reduction. Participants reported that their treatment outcomes were unsatisfying or even detrimental, telling us it ‘made things worse’, makes you ‘feel like crap’, with symptoms being ‘worse after surgery’ or that ‘they [surgeries] didn’t work well’, and ‘nothing seemed to have worked’. As some participants described, ‘even since the surgeries it's still constant pain’ (Phyllis, ≥35). A lack of treatment options was particularly apparent for participants undergoing assisted reproduction technology or trying to become pregnant. For example, Pam (25-34) shared, ‘I guess that is the real challenge for anyone with fertility issues who are going through treatment is that you’re just so limited in what you can take and how you can treat it’. Consequently, participants described that a range of treatment options and modalities should be available to manage endometriosis symptoms. Non-contraceptive treatment options for pain management were reported as an urgent need. This was due to the significant side-effects of hormonal contraceptive treatment experienced by participants as well as their inaccessibility to patients who are trying to conceive. As Sakura (25-34) described, ‘Contraception is a bloody Band-Aid. (…) I've been on so many different pills. I've had the Mirena. They all drive me absolutely up the wall’. She went on to explain that the effects of coming off contraception led to ‘flare ups’, difficulty with bowel movements, the need for ‘painkillers’, or a visit to the emergency department (ED). My husband and I want to try and have children, but it worries you coming off the pill, because you know anytime you have a period, you usually end up flaring and winding up in ED or you spend three days on so many painkillers that you then can’t go to the toilet and it just ends up being a cyclical, terrible time. I think that there needs to be other ways and better first line treatments than just whacking every person with endometriosis on some form of contraception. (Sakura, 25-34) For participants who were not trying to conceive, the use of medicinal cannabis was seen as a ‘natural’ way to ameliorate symptoms in contrast to biomedical treatment which could make ‘you feel terrible’. As explained by Lena: I really wish that it [medicinal cannabis] was available, because I’m sick to death of taking medication that makes you feel terrible, that is highly processed and highly, highly chemical-base substances stripping your body, where at least cannabis comes from a natural derived product. (Lena, 18-24) Medicinal cannabis was a popular potential treatment choice, with 15 out of 30 participants describing being interested in research on medicinal cannabis for endometriosis pain management. Nevertheless, there were concerns regarding the use of cannabis due to legality issues which might result in ‘losing jobs’. Safety in relation to the ‘effects of cannabis on the developing brain’, its ‘psychoactive effects’ and the potential for ‘long-term effects’ were also raised; highlighting the need for research to move beyond pain relief effectiveness and explore issues of medicinal cannabis and long-term safety. Nineteen out of 30 participants indicated using non-medical treatment for addressing pain such as diet, heat packs, Cannabidiol (CBD) oil, the transcutaneous electrical nerve stimulation (TENS) machine, meditation, yoga, Pilates, rest, magnesium, turmeric, fish oil, Epsom salt or chloride baths, and other forms of complementary and alternative medicine (CAM). For instance, Diana (18-24) said ‘I love my heat packs, but acupuncture is probably the really big one for me that’s non-medicated’. CAM treatment options mentioned by the participants included acupuncture, Chinese herbs, cupping, chiropractic, (pelvic) physiotherapy, and massage therapy. Participants felt that these should be offered as part of a holistic treatment that includes ‘nutrition, massage, acupuncture [and] other types of therapies’ (Wendy, ≥35). A holistic treatment would require the collaboration of various health care providers such as acupuncturists, osteopaths, physiotherapists and nutritionists. ‘So, the acupuncture, the osteopath, physiotherapist help you. All of those people can together and work out a plan.’ (Gloria, ≥35). Accordingly, four participants expressed a desire for a clear treatment plan that people with endometriosis can follow. As Kate (26-35) said, ‘I wish [the doctor] had just put a clear treatment plan in place five years ago’. Eight out of 30 participants spoke of the psychological impact of endometriosis as a ‘struggle’, describing their feelings as ‘depressed’, ‘more anxious’, ‘angry, so angry’, ‘desperate’, and characterizing their endometriosis-journey as an ‘emotional roller-coaster’, without being able to do much about it: ‘so much time just lying in bed crying’ (Genevieve, 18-24). Accordingly, another research priority must focus on the psychological implications of endometriosis. Four participants indicated interest in research on the ‘causes’ of endometriosis to develop a cure, since pain-management was considered to be a ‘band-aid’ (Naomi, ≥35). As Caroline stated, more research is needed ‘into what actually creates endometriosis at a certain degree, so what effects that, what makes it grow’ (Caroline, ≥35). These participants reported that knowing what causes endometriosis is likely to lead to treatment options to prevent endometriosis from progressing. For Gina, knowing whether endometriosis is hereditary would be a useful method for determining treatment options: I’d really like to find out what exactly causes it, although that's not gonna be easy, and just a genetic component, whether or not it gets passed down to your children and your grandchildren and if there is anything, we can do. (Gina, 25-34) Other minority views included the need for research into the immunological causes of endometriosis, whether it is an autoimmune disease, the impact on fertility of subgroups, and a deeper understanding of the effects of medications (like antibiotics) on endometriosis symptoms. Table 2 summarizes the research priorities based on the unmet needs of participants. Motivators and barriers to participation in endometriosis research The participants’ accounts indicated significant interest in participating in endometriosis research. Wendy (≥35) stated: ’I’m at a desperate point at the moment so I’m trying anything and everything. So, I would try whatever you [the researchers] got.’ According to Mindy (25-34), ‘I think a lot of endo women would probably jump at the chance to be involved in anything that could help.’ Eight out of 30 participants described that the motivation for participation in research is based on the expectation that the treatment provided may alleviate symptoms making everyday life easier. As Rosa (25-34) said, ‘if it’s gonna help day-to-day living, it’s worth it trying anything’. However, four participants also felt motivated by a need to help others, as expressed by Lucy (≥35), ‘You're doing it for the altruistic reason’. The altruistic reason to participate in endometriosis research was mostly highlighted in the group aged 35 and above. Caroline (≥35) explained: ‘You're doing it, so that you can help others and so that the [time to] diagnosis is not so long, so you're willing to help. You don't want a reward, don't need a reward. It's that you're helping.’ The motivation to help others through early detection became even more important when it came to the participant’s own daughters: I personally would go through heaven and hell to find something. I would take that placebo drug. I hate yoga. I would do yoga, I’ll go jogging for an hour every single day, if it meant that in the future, my daughter, there’s something there for her. (Angela, 18-24) Three other participants discussed that participating in research depends on the research topic. Pam (25-34) indicated that the research would need to align with her own individual situation: ‘I would commit time if I had a goal or a set thing that I was trying to achieve, then I would attempt to commit time to it.’ Since research participation is often driven by the expectation to relieve symptoms, the research topic was deemed as relevant especially if the treatment does not fit with the individual’s aims, beliefs, or former experiences. Pam (25-34) explained: ‘Yeah, what they’re actually studying. I chose not to go in an endometriosis study because it was just a different type of contraception.’ In research, the effectiveness of an intervention must be tracked using measurements such as pain scores, mental health levels, and blood parameters. According to 12 out of 30 participants, access to user-friendly tracking was seen as key to participation. The participants expressed that a reminder should be sent when tracking is to be performed. If the tracking is feasible and quick to complete, tracking every 2-3 days to daily was described as possible. If it was in a handy little app and it sent you a notification every day and it was super easy, tap-tap-tap, that would be fine. But if you’ve got to remember and log-in somewhere that’s clunky, then likely that you’d forget or not feel like it. (Carolyn, 18-24) Six participants stated that participation in research is considered more likely when invasive tests, such as blood collection, occurs at an accessible time and location. Blood collection was described as challenging during the first few days of the menstrual cycle as it is difficult for consumers to predict their pain symptoms. Flexible timing and thus a participant’s ability to travel is therefore essential. As (Jan, 25-34) said, ‘If it was in the first couple of days, then I probably need to organize for someone to drive me depending on where it was just because I can't really manage alone.’ Five participants expressed interest in receiving the results of blood tests collected as part of the study, or as Naomi (≥35) explained: ‘I’d be very interested to get them [the results of the blood test] if I was having them regularly.’ Getting an incentive for research participation such as a giftcard that would offset the cost of participation was discussed differently in the various age groups. In the 18- to 24-year-old group, five participants agreed that it would be beneficial to have an incentive for research participation. The request for an incentive parallels concern about problematic high medication costs. It was expressed that a financial incentive commensurate with the effort would be useful. ‘It depends how invasive it is. The more invasive, I think the more incentive there needs to be to get them to stick around.’ (Melissa, 18-24) In contrast, in the two older participant groups only two participants indicated an interest in getting an incentive while the majority (10 participants) explicitly stated that an incentive to participate in a research project was not important to them. Finally, participants stated that they access information about studies from endometriosis support groups, social media such as Facebook or Instagram, postings on university’s websites, or, in rural areas, at health centers. It is likely that a widespread dissemination of information about future research supports participant numbers. Overall, while the motivation of taking part in research is generally high, there are individual limiting factors that are set within the social context of an individual’s life. I think it [the participation in a research project] would really depend like for me, it would depend on what’s going on in my life and what the study is measuring for me, it would be dependent on whether I want to be a part of it but I’m pretty likely to. (Pam, 25-34) Four main barriers to participation were identified across the participant accounts. The most significant barrier was the requested time commitment for research participation. It was suggested that participation needs to fit into the daily schedule of people with endometriosis, or as Gina (25-34) said, ‘around working hours’, as she stated that she does not ‘really wanna take any time off work’. Flexibility was stated as a key component for research participation. It should be possible to choose the time of day as well as the days of the week. Jan (25-34) explained, ‘It would depend, for me, what part of my cycle I’m in, that's a big factor for me. At the moment, I go to the pool two to three times a week but not during my period.’ Participants’ responses varied regarding the time they could commit to a research study. A number of participants (10/30) stated 2-4 times per week for half an hour to an hour, while others stated either less (a maximum of half an hour to an hour per week as stated by four participants) or more (‘as much time as it needs to make me feel better’ (Wendy, ≥35)). Individual responses included that participation depends on their work situation and the potential benefits of participation. If you’re being really super practical about it, I would think, ‘How much is it helping me the thing you’re asking me to do’, and also what’s the compensation. If it’s gonna be something that’s really time consuming, I might think, ‘well, I’m getting a gift card that’s paying my groceries a week’, so I’ll be able to do that. But if there’s nothing in it for me and it might be a placebo drug I’m on, it’s just gonna feel like a waste of time. I want to be benevolent and help the future of research but I’m a selfish human. (Diana, 18-24) If research-related tasks can be performed at home, two participants reported being more inclined to do so more frequently than if they have to travel to complete the task. Pam indicated that the location would make a difference, saying ‘I think anything that you can do at home, you’re more likely – well, I would be way more likely there to do more frequently.’ (Pam, 25-34) For Sakura, if she must travel to participate, proximity is key: ‘If I need to go to Melbourne frequently with that, it's just a lot to have to do. But if it was available locally, then there wouldn't be a problem at all’ (Sakura, 25-34). As another barrier to participation in endometriosis studies, safety concerns were raised by eight participants: if there is a risk that participation in a research project will increase pain symptoms, participants reported not wanting to participate. Safety with current medication must be ensured. Gina (25-34) stated: ‘My only other thing would be to see if we could link it with our current medical things just so that they’re aware of like what’s happening and so that they can be built into our plan of care.’ Individual incompatibilities must be considered when prescribing medication in a research setting, or as Lena (18-24) stated: ‘making sure that they didn’t have the herbal supplement, didn’t have any contraindications with any of the drugs that the person was taking, 100%, I’d be on board.’ In research on medical cannabis, safety becomes even more important in terms of long-term effects as stated above and legal issues. Lena explained: I know that I’d lose my registration, so making sure that it was legal. When I’m drug-tested at work, making sure that I either had some legal documentation to say, ‘I’d take this for chronic health condition’, or whether it didn’t show up in that drug test, I know that sounds hilarious, but just having some form of back-up or even for instance, if we were to go onto this study with medical cannabis, having a letter from the university or from medical practitioner saying, ‘I am currently doing a clinical trial for this, this and this reason’, the clinical trial is on medical cannabis, whatever reason. Just making sure my bum was covered at work is a big thing for me. (Lena, 18-24) A minority view stated by four participants trying to conceive was that they did not want to participate in research projects. Overall, issues of conception played a particularly important role in the 25-34-year-old group. The issue was raised both in the context of wanting to conduct research on non-contraceptive treatment options to reduce pain-symptoms and as a concern about participating in research projects, particularly but not exclusively projects exploring medical cannabis. Table 3 provides an overview of the motivators and barriers that shape participation in endometriosis research. Discussion Our study found that Australian people with endometriosis, across a broad age range, had several research priorities they felt were currently unmet. This included the importance of a non-invasive diagnosis to help shorten diagnostic delay, a wider range of non-hormonal and non-surgical treatment options, and a focus on understanding the cause and thus developing a cure for endometriosis. Despite the strong interest in participating in research projects, motivated in part by anticipated symptom relief and a desire to help others, several barriers were found, including a high time commitment and cost associated with participating in a research project. Previous research has found discrepancies between research priorities as stated by patients or close family members compared to those formulated by healthcare providers and scientists, 21 as demonstrated in the current study. Since dominant personalities may influence the outcome of face-to-face consensus groups, 25 the presence of health-care professionals in priority setting partnerships may lead to endometriosis patients’ holding back thoughts that can more freely pronounced in a setting without people who are presenting the current system. Comparing the results of the top ten research priorities derived from the Endometriosis Priority Setting Partnership in the UK and Ireland in 2017 that include health care professionals, researchers, and consumers, 10 and the findings of this research project with endometriosis patients only, the similarities are evident: seven out of nine research priorities are consistent including a desire for a non-invasive diagnostic tool and a range of treatment options. However, when endometriosis patients’ express their views without being influenced by the presence of health-care practitioners, discrepancies became apparent in terms of indicating an interest in other treatment options than those existing. Firstly, according to the findings of this study, there is a need for research to develop a non-contraceptive first-line treatment so that seeking pregnancy does not leave endometriosis patients being untreated. Secondly, since participants indicated interest in research on the use of medicinal cannabis and a holistic treatment including coordinated use of CAM therapies, research is needed on the effective CAM to enhance multidisciplinary treatment plans. Since CAM treatment costs are not yet covered by insurance in Australia, future research needs to investigate the effectiveness of non-medical and CAM treatments so that evidence-based decisions about coverage of non-medical treatment options can be made. Based on the research priority differences between the various age groups, two areas of relevance to research design emerged: participants statements in the 18-24-year-old group indicated an issue with high treatment costs and an interest in an incentive for research participation to balance travel costs. Consequently, low-cost treatment options especially for younger Australians with endometriosis are needed and an incentive for research participation with this age group should be part of research planning. For the middle-aged group, for those who are trying to get pregnant, conception is key for their decision making. This is in line with formerly published research recommendations. 10 , 17 Researchers need to consider that dropouts due to reproduction is likely in that age group. Considering patients’ needs when designing a research project involving people with endometriosis is assumed to improve research quality. Involving consumers in research design has beneficial effects and leads to higher quality and more clinical relevance because of the unique perspective that consumers can bring to a research project. 19 In research, co-designs are used to meet the needs of those affected, 26 foster acceptance by target users, 27 offer a more sustainable and effective translation approach into clinical practice, increase the effectiveness of the intervention, 28 and improve the quality and appropriateness of study design. 29 Tay et al., who reviewed co-design practices in diet and nutrition research, reported that a high percentage (75%) of studies that showed positive outcomes were those that involved end-users in prototype testing, followed by those that assessed user needs to inform intervention focus (67%) and those that involved end-users in pilot testing (67%). 30 Taking patients’ needs into account is specifically important in endometriosis research, as high dropout rates have been reported in the literature: Bergqvist et al. reported that 40 out 48 patients did not complete the 18 month-long follow up period. 31 They stated the highest dropout numbers in the placebo groups due to insufficient efficacy. Wright and Redwine stated high dropout rates not only in research but in treatment regiments due to intolerable side effects. 32 Kuivasaari et al. reported a dropout rate of 52.2% by people with stage III/IV endometriosis compared to 38.7% of participants with milder endometriosis in an observational study. 33 These examples indicate that dropouts do not only occur in placebo-groups but depend on an unsatisfying treatment experience and increases in patients with a higher stage of endometriosis – indicating that patients with a higher burden have more problems to fulfil the requested things in research. In consequence, future research can take patients’ needs defined in this research project into account to make participation more likely and minimize dropout rates. Therefore, it is essential to co-design and co-produce endometriosis-research across the whole research cycle with consumers. Strengths and limitations A main strength to this project is that the focus groups were run as discussions, where participants were able to respond to each other and get involved in an exchange. These discussions were driven more by participants than researchers and enabled participants to express experiences and opinions freely. Another strength is that the recruitment included a wide range of ages and geographical locations, a key consideration in a country as vast as Australia, as the experiences and views from participants did differ by age and those in rural and remote areas have significant challenges that may not be present in urban areas where treatment options are more plentiful. Nonetheless there are limitations that must be acknowledged. Given that the recruitment included Australians only, the findings may not be generalizable to other parts of the world. The challenges of research participation by rural and remote people may not be so pronounced in more densely populated countries. However, it is likely that people around the world who live in rural areas with long distances to major cities face the same problem. Similarly, research priorities are likely to be the same for Australian endometriosis consumers and worldwide. Secondly, the recruitment via social media allowed to ensure a broad demographic, however, it must be noted that recruitment via social media tends to include those with more severe symptoms and worse quality of life, 34 so those in the community more generally may have less severe symptoms and this may, in turn, change their priorities. However, given the consistency between our findings and those internationally, the impact of this is likely to be minimal. Conclusions People with endometriosis in Australia reported several research priorities including improving non-invasive methods of diagnosis and providing more options for effective non-hormonal treatment strategies, especially those that were viewed as more holistic such as acupuncture and herbal medicine. Medicinal cannabis was a popular target for more research, but other barriers such as driving would also need to be addressed to be a practical option for many. Willingness to engage in research was high, but consideration to the significant and often unpredictable disease people with endometriosis have is vital when developing clinical studies to ensure there is not an undue burden on participants. Abbreviations CAM Complementary and alternative medicine CBD Cannabidiol ED Emergency department PhD Doctor of philosophy TENS Transcutaneous electrical nerve stimulation Declarations Ethics approval and consent to participate Ethical approval was provided by the Western Sydney University Human Ethics Committee on 14 th Feb 2019 (Approval H13131). All research was undertaken according to relevant guidelines outlined in the National Statement on Ethical Conduct in Human Research (2018). Participants provided written informed consent prior to the commencement of the focus groups. Consent for publication Not applicable. Availability of data and materials The anonymized transcripts analyzed for the current publication are available from the corresponding author on reasonable request. Disclosure Statement MA is the chair of the clinical advisory committee for Endometriosis Australia, the chair of the research committee for Endometriosis Australia and part of the endometriosis expert working group for RANZCOG. All other authors have no disclosures. Funding Funded by a partnership grant between Western Sydney University and Metagenics Inc. Authors’ contributions NG: Methodology, Literature review, Formal analysis, Writing – Original draft. EG: Methodology, Contribution to formal analysis and interpretation of data, Writing – Review & Editing, Supervision. AH : Writing – Review & Editing . MA: Conceptualization, Investigation, Methodology, Collection of primary data, Project administration, Writing – Review & Editing, Supervision. All authors read and approved the final manuscript. Acknowledgements We thank the participants for their time and willingness to share their experiences with us and to all the support and advocacy organisations who supported this research including Endometriosis Australia, QENDO, EndoActive and the Pelvic Pain Foundation of Australia. References Rowlands IJ, Abbott JA, Montgomery GW, Hockey R, Rogers P, Mishra GD. Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. BJOG An Int J Obstet Gynaecol. 2021;128(4):657–65. Seear K. The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Soc Sci Med. 2009;69(8):1220–7. Rubinsky V, Gunning JN, Cooke-Jackson A. “I Thought I Was Dying:” (Un)Supportive Communication Surrounding Early Menstruation Experiences. Health Commun [Internet]. 2020;35(2):242–52. Available from: https://doi.org/10.1080/10410236.2018.1548337 Berker B, Seval M. Problems with the diagnosis of endometriosis. Women’s Heal. 2015;11(5):597–601. 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Available from: http://www.awmf.org/leitlinien/detail/ll/015-045.html Boote J, Telford R, Cooper C. Consumer involvement in health research: A review and research agenda. Health Policy (New York). 2002;61(2):213–36. Pandey S, Porter M, Bhattacharya S. What women want from women’s reproductive health research: A qualitative study. Heal Expect. 2015;18(6):2606–15. Brady PC, Horne AW, Saunders PTK, Thomas AM, Missmer SA, Farland L V. Research priorities for endometriosis differ among patients, clinicians, and researchers. Am J Obstet Gynecol. 2020;222(6):630–2. Armour M, Cave AE, Schabrun SM, Steiner GZ, Zhu X, Song J, et al. Manual Acupuncture plus Usual Care Versus Usual Care Alone in the Treatment of Endometriosis-Related Chronic Pelvic Pain: A Randomized Controlled Feasibility Study. J Altern Complement Med. 2021;27(10):841–9. Erlingsson C, Brysiewicz P. A hands-on guide to doing content analysis. African J Emerg Med [Internet]. 2017;7(3):93–9. Available from: http://dx.doi.org/10.1016/j.afjem.2017.08.001 Roller MR. A quality approach to qualitative content analysis: Similarities and differences compared to other qualitative methods. Forum Qual Soc Res [Internet]. 2019;20(3). Available from: https://www.qualitative-research.net/index.php/fqs/article/view/3385/4486 Keeney S, Hasson F, McKenna H. The Delphi Technique in Nursing and Health Research. Chichester, West Sussex: Wiley-Blackwell; 2011. 198 p. Jessup RL, Osborne RH, Buchbinder R, Beauchamp A. Using co-design to develop interventions to address health literacy needs in a hospitalised population. BMC Health Serv Res. 2018;18(1):1–13. Sanders EB-N, Stappers PJ. Co-creation and the New Landscapes of Design. Co-Design. 2008;4:5–18. Andersson N, Nava-Aguilera E, Arosteguí J, Morales-Perez A, Suazo-Laguna H, Legorreta-Soberanis J, et al. Evidence based community mobilization for dengue prevention in Nicaragua and Mexico (Camino Verde, the Green Way): Cluster randomized controlled trial. BMJ. 2015;351. Mitchell C, Burke K, Halford N, Rothwell K, Darley S, Woodward-Nutt K, et al. Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS). Res Involv Engagem. 2020;6(1):1–9. Tay BSJ, Cox DN, Brinkworth GD, Davis A, Edney SM, Gwilt I, et al. Co-Design Practices in Diet and Nutrition Research: An Integrative Review. Nutrients. 2021;13(3593):1–22. Bergqvist A, Bergh T, Hogström L, Mattsson S, Nordenskjöld F, Rasmussen C. Effects of triptorelin versus placebo on the symptoms of endometriosis. Fertil Steril. 1998;69(4):702–8. Wright JT, Redwine DB. Treatment of endometriosis—a special skills module only? Gynecol Surg. 2004;1(2):67–8. Kuivasaari P, Hippeläinen M, Anttila M, Heinonen S. Effect of endometriosis on IVF/ICSI outcome: Stage III/IV endometriosis worsens cumulative pregnancy and live-born rates. Hum Reprod. 2005;20(11):3130–5. De Graaff AA, Dirksen CD, Simoens S, De Bie B, Hummelshoj L, D’Hooghe TM, et al. Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies. Hum Reprod. 2015;30(6):1331–41. Tables Tables 1 to 3 are available in the Supplementary Files section. Additional Declarations Competing interest reported. MA is the chair of the clinical advisory committee for Endometriosis Australia, the chair of the research committee for Endometriosis Australia and part of the endometriosis expert working group for RANZCOG. All other authors have no disclosures. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-2783391","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":192544322,"identity":"d18839f5-bfa4-4d61-a08e-2e51bf9523d7","order_by":0,"name":"Nora Giese","email":"","orcid":"","institution":"Praxis für Chinesische Medizin","correspondingAuthor":false,"prefix":"","firstName":"Nora","middleName":"","lastName":"Giese","suffix":""},{"id":192544323,"identity":"23b47d9b-158e-4ebe-8bb8-f3971cffa8e1","order_by":1,"name":"Emilee Gilbert","email":"","orcid":"","institution":"Western Sydney University","correspondingAuthor":false,"prefix":"","firstName":"Emilee","middleName":"","lastName":"Gilbert","suffix":""},{"id":192544324,"identity":"0d10117b-5205-4353-81d6-86ff1c81199d","order_by":2,"name":"Alexandra Hawkey","email":"","orcid":"","institution":"Translational Health Research Institute (THRI), Western Sydney University","correspondingAuthor":false,"prefix":"","firstName":"Alexandra","middleName":"","lastName":"Hawkey","suffix":""},{"id":192544325,"identity":"c433697b-93e1-47bc-a66b-6fad1aa92e28","order_by":3,"name":"Mike Armour","email":"data:image/png;base64,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","orcid":"","institution":"NICM Health Research Institute, Western Sydney University","correspondingAuthor":true,"prefix":"","firstName":"Mike","middleName":"","lastName":"Armour","suffix":""}],"badges":[],"createdAt":"2023-04-06 03:14:18","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-2783391/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-2783391/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":39905636,"identity":"5e443db3-fd11-4400-ae65-71e08b7d541f","added_by":"auto","created_at":"2023-07-12 10:59:26","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":309926,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-2783391/v1/fbc1eb97-1cba-4537-a2c7-38d3cc767a05.pdf"},{"id":35985276,"identity":"bcbe9878-e095-4e8d-a042-6efcb9995d06","added_by":"auto","created_at":"2023-04-19 08:16:38","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":65472,"visible":true,"origin":"","legend":"","description":"","filename":"Additionalfile1.pdf","url":"https://assets-eu.researchsquare.com/files/rs-2783391/v1/7ace8425abd11b1f398d38a6.pdf"},{"id":35985275,"identity":"846371fe-4584-4d40-8b5f-63773659f39d","added_by":"auto","created_at":"2023-04-19 08:16:38","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":170139,"visible":true,"origin":"","legend":"","description":"","filename":"Table123.docx","url":"https://assets-eu.researchsquare.com/files/rs-2783391/v1/a68ce05a61f529a156e0e046.docx"}],"financialInterests":"Competing interest reported. MA is the chair of the clinical advisory committee for Endometriosis Australia, the chair of the research committee for Endometriosis Australia and part of the endometriosis expert working group for RANZCOG. All other authors have no disclosures.","formattedTitle":"Unmet needs of Australians in endometriosis research: a qualitative study of research priorities, drivers and barriers to participation","fulltext":[{"header":"Background","content":"\u003cp\u003eEndometriosis affects around 1 in 9 women and those assigned female at birth in Australia by the age of 44.\u003csup\u003e1\u003c/sup\u003e Due to stigma and silencing surrounding the menstrual cycle\u003csup\u003e2\u003c/sup\u003e\u003csup\u003e,3\u003c/sup\u003e and difficulties with diagnosis,\u003csup\u003e4\u003c/sup\u003e it is estimated that people in Australia can experience a diagnostic delay of between 6.4 to 8 years.\u003csup\u003e5,\u003c/sup\u003e\u003csup\u003e6\u003c/sup\u003e Endometriosis causes significant pain and fatigue\u003csup\u003e5\u003c/sup\u003e and can negatively impact all aspects of an individual\u0026rsquo;s life, including work, education, sexual and social relationships, self-identity, and body image.\u003csup\u003e5,\u003c/sup\u003e\u003csup\u003e7,\u003c/sup\u003e\u003csup\u003e8\u003c/sup\u003e It also has a significant cost of illness burden of over 9.7 billion dollars per year in Australia.\u003csup\u003e9\u003c/sup\u003e Despite the significant personal and societal burden, endometriosis research has been under-funded and under-researched when compared to other chronic conditions with a similar prevalence and health-care burden.\u003csup\u003e10\u003c/sup\u003e This has led to limited understanding of the disease aetiology and slowing innovations in diagnostic and treatment.\u003csup\u003e11,\u003c/sup\u003e\u003csup\u003e12\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eIn Australia, the National Action Plan for Endometriosis, launched in 2018, has three major goals: (i) Awareness and education, (ii) Clinical management and care, and (iii) Research\u003csup\u003e13\u003c/sup\u003e. In order to meet goal \u0026nbsp;three within the constraints of limited funding, the setting of research priorities is vital.\u003csup\u003e14\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eEndometriosis research priorities have been developed in the past.\u003csup\u003e10,12,15-18\u003c/sup\u003e The most comprehensive publication on endometriosis research recommendations reported the findings of the 3\u003csup\u003erd\u003c/sup\u003e International Consensus Workshop on Research Priorities in Endometriosis in 2014 with 60 endometriosis investigators from 19 countries.\u003csup\u003e17\u003c/sup\u003e One hundred and seven research priorities were recommended, concerning all key areas of endometriosis research: pathogenesis and pathophysiology, symptoms, diagnosis, classification and prognosis, disease and symptom management, low-income countries and low-resource settings, and research policy. While this compilation of endometriosis research topics provides a comprehensive overview on the aspects of endometriosis that are not well understood or require development, it remains unclear which of these 107 recommendations should be prioritized according to patients\u0026rsquo; needs.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePrevious research priority setting efforts have mostly included researchers and/or clinicians, with only one reporting consumer involvement.\u003csup\u003e10\u003c/sup\u003e The importance of consumer involvement in health research is increasingly being understood.\u003csup\u003e19\u003c/sup\u003e Patient centred medicine demands consumer involvement in health research, an issue debated and advocated for by bodies including the Cochrane collaboration, the Consumer\u0026rsquo;s health forum of Australia, and the UK\u0026rsquo;s National Institute of Health and Clinical excellence.\u003csup\u003e19,\u003c/sup\u003e\u003csup\u003e20\u003c/sup\u003e Endometriosis research priorities identified by consumers often differ from those developed by clinicians and scientists in key areas.\u003csup\u003e21\u003c/sup\u003e For example, consumers\u0026nbsp;and family members were more likely to prioritize education/awareness, emotional impact and comorbid conditions, while healthcare professionals and scientists are more interested in cause/pathology or risk factors for endometriosis, diagnosis and screening, treatment, and fertility.\u003csup\u003e21\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eAnother challenge for those with endometriosis is the significant pain and fatigue caused by the disease, as well as the unpredictable nature of the pain, known as \u0026lsquo;endo flares\u0026rsquo;. This can act as a barrier to consumer participation in research. This can be particularly difficult when data collection utilizes in-person measurements that are tied to particular timepoints as an unexpected endo flare or the arrival of the menstrual period can cause significant pain, potentially leading to substantial dropouts or missing data.\u003csup\u003e22\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eConsidering the importance of consumer led priority setting, this research aims to explore what people with endometriosis perceive to be unmet research needs, and how endometriosis research can be tailored to meet consumer\u0026rsquo;s specific needs. By prioritising the voices of those with endometriosis we are better placed to understand which research topics should be prioritised, and how research can be conducted so that people with endometriosis are empowered to take part in research that interests them.\u0026nbsp;\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eA qualitative design consisting of focus group interviews was used to explore the research needs of people with endometriosis, and in particular future research priorities. Ethical approval was obtained from the Western Sydney University Human Ethics Committee (Approval H13131) in February 2019. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipant were eligible for inclusion if they were aged over 18, currently lived in Australia, and had a diagnosis of endometriosis via laparoscopy. Recruitment occurred via social media postings made in February and March 2019. Australian endometriosis support organizations including Endometriosis Australia and QENDO posted the research invitation on their Facebook and Instagram pages, with a combined follower count of over 45k people. Participants were reimbursed $20 AUD for their time via a gift card at the completion of the study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA total of 30 people participated in the focus groups\u0026nbsp;analyzed\u0026nbsp;as part of this research project. Participants were grouped in age ranges of\u0026nbsp;18-24 (n=7, 23%), 25-34 (n=14, 47%) and\u0026nbsp;\u0026ge;35 (n=9, 30%) years. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMost participants identified as Caucasian (n= 24, 80%), were in heterosexual marriages (n =19, 63%) and did not have children (n=25, 83%). Over half worked in fulltime employment (n=18, 60%) and had a minimum of a university undergraduate degree. See Table 1 for further demographic data.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProcedure\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFour focus groups with 6-9 people, totalling 30 people, with a diagnosis of endometriosis were conducted in March 2019, audio-recorded, and transcribed verbatim. Focus groups were conducted via the online platform Zoom and lasted 70-90 minutes. Given that priorities and barriers may depend on age, focus groups were divided into the following brackets 18-24, 25-34 and \u0026ge;35 years old. Questions addressed the areas of endometriosis research that need further investigation, why these are important to participants, and barriers to participating in a research project on endometriosis. See Additional file 1 for complete schedule. This paper only focuses on the questions related to priorities and barriers to research participation. Additional analysis will be published separately.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAnalysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA qualitative content analysis was used to ascertain patients\u0026rsquo; views on research priorities. This method is a\u0026nbsp;form of analysis that allows researchers to systematically transform large amounts of qualitative data into an organized and concise summary of key results.\u003csup\u003e23\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eFor data analysis, an inductive approach was used following the two-phase, eight step process described by Roller (2019).\u003csup\u003e24\u003c/sup\u003e Phase 1 included the data generation and coding. Familiarization with the content of transcripts was then gained through repeated reading. Each of the four focus group transcripts formed one unit of analysis. Codes were key ideas or statements identified in the data by two researchers independently from each other to foster reliability (NG and EG). The codes were discussed amongst researchers until consensus was achieved. The final codes were applied to all four transcripts by author one (NG). Coding and data analysis were carried out manually. Statements within the transcripts were labelled with the corresponding code by using the Microsoft word comment function. Phase 2 contained the data analysis with categorization and interpretation (NG, EG and MA): Key codes were listed, grouped together and labelled as a thematic category in a separate Word-document. The categories were discussed amongst all researchers until consensus was achieved. In the final step, interpretations and implications were drawn and discussed amongst all researchers.\u003c/p\u003e\n\u003cp\u003eTo quantify participants\u0026rsquo; statements, codes were word searched for across participants accounts. This process involved checking each participant to see whether they made a statement about a specific code. An Excel spreadsheet was used to either note each participant\u0026rsquo;s statement about the specific code or to note if the participant did not make a statement about that code. A count was then made of how many participants made a statement about that specific code. Representative quotes from each code are presented below, followed by the participant pseudonym and age range. \u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eTwo categories were developed from the data: (i) \u0026rsquo;Unmet research needs\u0026rsquo; and (ii) \u0026lsquo;Motivators and barriers to participation in endometriosis research\u0026rsquo;.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eUnmet research needs: Diagnosis, treatment, and cure\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants described three main research areas that require exploration in future research: diagnosis, treatment, and the development of a cure.\u003c/p\u003e\n\u003cp\u003eEleven out of 30 participants described how getting an endometriosis diagnosis was a problematic process. This was due in part to the prolonged time to diagnosis and the invasive nature of laparoscopic surgery, which has been historically required for a confirmed diagnosis. Participants reported that an endometriosis diagnosis \u0026lsquo;seems to always be the last [option]\u0026rsquo; (Caroline, \u0026ge;35), with all other possible physical and psychological causes ruled out prior to being offered a laparoscopy. As Pam (25-34) said, \u0026lsquo;I had a healthy appendix taken out, and I was told I was stressed\u0026rsquo;. Gloria (\u0026ge;35) explained the frustration she experienced saying, \u0026lsquo;If you present to a doctor or gyno with these sorts of complications and pains, to not just be put down as, \u0026ldquo;Oh it\u0026rsquo;s this, oh it\u0026rsquo;s that. Oh, we can\u0026rsquo;t tell unless you have a laparoscopy.\u0026rdquo;\u0026rsquo; For Wendy a diagnosis of endometriosis only came after having been repeatedly mis-diagnosed with other conditions including a urinary tract infection and gonorrhea:\u003c/p\u003e\n\u003cp\u003eI think a bit more research into that [diagnosis of endometriosis] would be good for when a woman just says she\u0026rsquo;s got pelvic pain \u0026ndash; I\u0026rsquo;ve just been told so many times: \u0026lsquo;Oh, you\u0026rsquo;ve got a UTI [urinary tract infection], you\u0026rsquo;ve got gonorrhoea, you\u0026rsquo;ve got all these things\u0026rsquo;, and then the tests comes back and they: \u0026lsquo;Oh, you don\u0026rsquo;t have any of that\u0026rsquo;. It\u0026rsquo;s hard. (Wendy, \u0026ge;35)\u003c/p\u003e\n\u003cp\u003ePam (25-34) explained that a diagnosis allowed her to know that \u0026lsquo;you\u0026rsquo;re not insane, and all this isn\u0026apos;t just in your head, there\u0026rsquo;s actually something, would be a really good place to start\u0026rsquo;. Early detection could ameliorate the feeling of uncertainty around the perceived legitimacy of symptoms prior to the diagnosis. For Lana (25-34), this uncertainty was around the outcome of surgery, and the hope of receiving a diagnosis given the significant cost associated with such surgery.\u003c/p\u003e\n\u003cp\u003eI also remember leading into my first surgery that I was also really nervous that I was going to be outlaying all of these costs of the surgery and all of those associated things \u0026ndash; only to not know, if I was able going to be getting a diagnosis of any sort. I remember waking up in surgery and asking: \u0026lsquo;Did they find anything?\u0026rsquo; Because I would have felt guilty spending our money on all of that, only to find out that, no, there was nothing there. (Lana, 25-34)\u003c/p\u003e\n\u003cp\u003eParticipants felt that \u0026lsquo;early intervention is really key\u0026rsquo; (Jenna, 25-34) as it is likely to change the treatment trajectory resulting in better health outcomes, including a reduction in emotional burden. As Jan described:\u003c/p\u003e\n\u003cp\u003eI didn\u0026apos;t get diagnosed \u0026lsquo;till I was 34, and that was after years of infertility and pregnancy loss. If I had known about this 10 years ago because someone did a blood test or a scan of some sort, it could have saved me all of that trauma. (Jan, 25-34)\u003c/p\u003e\n\u003cp\u003eParticipants stated that early detection could include genetic screening or the formal collection of early symptoms beyond pelvic pain alone. Gloria explained feeling not \u0026lsquo;listened to\u0026rsquo; when describing her endometriosis symptoms to healthcare professionals and thus saw value in a pre-laparoscopy test that may indicate endometriosis:\u003c/p\u003e\n\u003cp\u003eThere is enough people \u0026ndash; there\u0026rsquo;s one in ten women, so there\u0026rsquo;s a lot people presenting with all these conditions, there needs to be something that they can do, a test other than just the laparoscopy. If they could research into that so you could see that, yes, you are a candidate for endometriosis, so now let\u0026rsquo;s do a laparoscopy, but at least be listened to prior to just have the laparoscopy. (Gloria, \u0026ge;35)\u003c/p\u003e\n\u003cp\u003eTwenty out of 30 participants described the current endometriosis treatment as limited, with potentially effective treatment such as surgery not always having the desired results for pain-reduction. Participants reported that their treatment outcomes were unsatisfying or even detrimental, telling us it \u0026lsquo;made things worse\u0026rsquo;, makes you \u0026lsquo;feel like crap\u0026rsquo;, with symptoms being \u0026lsquo;worse after surgery\u0026rsquo; or that \u0026lsquo;they [surgeries] didn\u0026rsquo;t work well\u0026rsquo;, and \u0026lsquo;nothing seemed to have worked\u0026rsquo;. As some participants described, \u0026lsquo;even since the surgeries it\u0026apos;s still constant pain\u0026rsquo; (Phyllis, \u0026ge;35). A lack of treatment options was particularly apparent for participants undergoing assisted reproduction technology or trying to become pregnant. For example, Pam (25-34) shared, \u0026lsquo;I guess that is the real challenge for anyone with fertility issues who are going through treatment is that you\u0026rsquo;re just so limited in what you can take and how you can treat it\u0026rsquo;. Consequently, participants described that a range of treatment options and modalities should be available to manage endometriosis symptoms.\u003c/p\u003e\n\u003cp\u003eNon-contraceptive treatment options for pain management were reported as an urgent need. This was due to the significant side-effects of hormonal contraceptive treatment experienced by participants as well as their inaccessibility to patients who are trying to conceive. As Sakura (25-34) described, \u0026lsquo;Contraception is a bloody Band-Aid. (\u0026hellip;) I\u0026apos;ve been on so many different pills. I\u0026apos;ve had the Mirena. They all drive me absolutely up the wall\u0026rsquo;. She went on to explain that the effects of coming off contraception led to \u0026lsquo;flare ups\u0026rsquo;, difficulty with bowel movements, the need for \u0026lsquo;painkillers\u0026rsquo;, or a visit to the emergency department (ED).\u003c/p\u003e\n\u003cp\u003eMy husband and I want to try and have children, but it worries you coming off the pill, because you know anytime you have a period, you usually end up flaring and winding up in ED or you spend three days on so many painkillers that you then can\u0026rsquo;t go to the toilet and it just ends up being a cyclical, terrible time. I think that there needs to be other ways and better first line treatments than just whacking every person with endometriosis on some form of contraception. (Sakura, 25-34)\u003c/p\u003e\n\u003cp\u003eFor participants who were not trying to conceive, the use of medicinal cannabis was seen as a \u0026lsquo;natural\u0026rsquo; way to ameliorate symptoms in contrast to biomedical treatment which could make \u0026lsquo;you feel terrible\u0026rsquo;. As explained by Lena:\u003c/p\u003e\n\u003cp\u003eI really wish that it [medicinal cannabis] was available, because I\u0026rsquo;m sick to death of taking medication that makes you feel terrible, that is highly processed and highly, highly chemical-base substances stripping your body, where at least cannabis comes from a natural derived product. (Lena, 18-24)\u003c/p\u003e\n\u003cp\u003eMedicinal cannabis was a popular potential treatment choice, with 15 out of 30 participants describing being interested in research on medicinal cannabis for endometriosis pain management. Nevertheless, there were concerns regarding the use of cannabis due to legality issues which might result in \u0026lsquo;losing jobs\u0026rsquo;. Safety in relation to the \u0026lsquo;effects of cannabis on the developing brain\u0026rsquo;, its \u0026lsquo;psychoactive effects\u0026rsquo; and the potential for \u0026lsquo;long-term effects\u0026rsquo; were also raised; highlighting the need for research to move beyond pain relief effectiveness and explore issues of medicinal cannabis and long-term safety.\u003c/p\u003e\n\u003cp\u003eNineteen out of 30 participants indicated using non-medical treatment for addressing pain such as diet, heat packs, Cannabidiol (CBD) oil, the transcutaneous electrical nerve stimulation (TENS) machine, meditation, yoga, Pilates, rest, magnesium, turmeric, fish oil, Epsom salt or chloride baths, and other forms of complementary and alternative medicine (CAM). For instance, Diana (18-24) said \u0026lsquo;I love my heat packs, but acupuncture is probably the really big one for me that\u0026rsquo;s non-medicated\u0026rsquo;. CAM treatment options mentioned by the participants included acupuncture, Chinese herbs, cupping, chiropractic, (pelvic) physiotherapy, and massage therapy. Participants felt that these should be offered as part of a holistic treatment that includes \u0026lsquo;nutrition, massage, acupuncture [and] other types of therapies\u0026rsquo; (Wendy, \u0026ge;35).\u003c/p\u003e\n\u003cp\u003eA holistic treatment would require the collaboration of various health care providers such as acupuncturists, osteopaths, physiotherapists and nutritionists. \u0026lsquo;So, the acupuncture, the osteopath, physiotherapist help you. All of those people can together and work out a plan.\u0026rsquo; (Gloria, \u0026ge;35). Accordingly, four participants expressed a desire for a clear treatment plan that people with endometriosis can follow. As Kate (26-35) said, \u0026lsquo;I wish [the doctor] had just put a clear treatment plan in place five years ago\u0026rsquo;.\u003c/p\u003e\n\u003cp\u003eEight out of 30 participants spoke of the psychological impact of endometriosis as a \u0026lsquo;struggle\u0026rsquo;, describing their feelings as \u0026lsquo;depressed\u0026rsquo;, \u0026lsquo;more anxious\u0026rsquo;, \u0026lsquo;angry, so angry\u0026rsquo;, \u0026lsquo;desperate\u0026rsquo;, and characterizing their endometriosis-journey as an \u0026lsquo;emotional roller-coaster\u0026rsquo;, without being able to do much about it: \u0026lsquo;so much time just lying in bed crying\u0026rsquo; (Genevieve, 18-24). Accordingly, another research priority must focus on the psychological implications of endometriosis.\u003c/p\u003e\n\u003cp\u003eFour participants indicated interest in research on the \u0026lsquo;causes\u0026rsquo; of endometriosis to develop a cure, since pain-management was considered to be a \u0026lsquo;band-aid\u0026rsquo; (Naomi, \u0026ge;35). As Caroline stated, more research is needed \u0026lsquo;into what actually creates endometriosis at a certain degree, so what effects that, what makes it grow\u0026rsquo; (Caroline, \u0026ge;35). These participants reported that knowing what causes endometriosis is likely to lead to treatment options to prevent endometriosis from progressing. For Gina, knowing whether endometriosis is hereditary would be a useful method for determining treatment options:\u003c/p\u003e\n\u003cp\u003eI\u0026rsquo;d really like to find out what exactly causes it, although that\u0026apos;s not gonna be easy, and just a genetic component, whether or not it gets passed down to your children and your grandchildren and if there is anything, we can do. (Gina, 25-34)\u003c/p\u003e\n\u003cp\u003eOther minority views included the need for research into the immunological causes of endometriosis, whether it is an autoimmune disease, the impact on fertility of subgroups, and a deeper understanding of the effects of medications (like antibiotics) on endometriosis symptoms. Table 2 summarizes the research priorities based on the unmet needs of participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMotivators and barriers to participation in endometriosis research\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe participants\u0026rsquo; accounts indicated significant interest in participating in endometriosis research. Wendy (\u0026ge;35) stated: \u0026rsquo;I\u0026rsquo;m at a desperate point at the moment so I\u0026rsquo;m trying anything and everything. So, I would try whatever you [the researchers] got.\u0026rsquo; According to Mindy (25-34), \u0026lsquo;I think a lot of endo women would probably jump at the chance to be involved in anything that could help.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eEight out of 30 participants described that the motivation for participation in research is based on the expectation that the treatment provided may alleviate symptoms making everyday life easier. As Rosa (25-34) said, \u0026lsquo;if it\u0026rsquo;s gonna help day-to-day living, it\u0026rsquo;s worth it trying anything\u0026rsquo;. However, four participants also felt motivated by a need to help others, as expressed by Lucy (\u0026ge;35), \u0026lsquo;You\u0026apos;re doing it for the altruistic reason\u0026rsquo;. The altruistic reason to participate in endometriosis research was mostly highlighted in the group aged 35 and above. Caroline (\u0026ge;35) explained: \u0026lsquo;You\u0026apos;re doing it, so that you can help others and so that the [time to] diagnosis is not so long, so you\u0026apos;re willing to help. You don\u0026apos;t want a reward, don\u0026apos;t need a reward. It\u0026apos;s that you\u0026apos;re helping.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eThe motivation to help others through early detection became even more important when it came to the participant\u0026rsquo;s own daughters:\u003c/p\u003e\n\u003cp\u003eI personally would go through heaven and hell to find something. I would take that placebo drug. I hate yoga. I would do yoga, I\u0026rsquo;ll go jogging for an hour every single day, if it meant that in the future, my daughter, there\u0026rsquo;s something there for her. (Angela, 18-24)\u003c/p\u003e\n\u003cp\u003eThree other participants discussed that participating in research depends on the research topic. Pam (25-34) indicated that the research would need to align with her own individual situation: \u0026lsquo;I would commit time if I had a goal or a set thing that I was trying to achieve, then I would attempt to commit time to it.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eSince research participation is often driven by the expectation to relieve symptoms, the research topic was deemed as relevant especially if the treatment does not fit with the individual\u0026rsquo;s aims, beliefs, or former experiences. Pam (25-34) explained: \u0026lsquo;Yeah, what they\u0026rsquo;re actually studying. I chose not to go in an endometriosis study because it was just a different type of contraception.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eIn research, the effectiveness of an intervention must be tracked using measurements such as pain scores, mental health levels, and blood parameters. According to 12 out of 30 participants, access to user-friendly tracking was seen as key to participation. The participants expressed that a reminder should be sent when tracking is to be performed. If the tracking is feasible and quick to complete, tracking every 2-3 days to daily was described as possible.\u003c/p\u003e\n\u003cp\u003eIf it was in a handy little app and it sent you a notification every day and it was super easy, tap-tap-tap, that would be fine. But if you\u0026rsquo;ve got to remember and log-in somewhere that\u0026rsquo;s clunky, then likely that you\u0026rsquo;d forget or not feel like it. (Carolyn, 18-24)\u003c/p\u003e\n\u003cp\u003eSix participants stated that participation in research is considered more likely when invasive tests, such as blood collection, occurs at an accessible time and location. Blood collection was described as challenging during the first few days of the menstrual cycle as it is difficult for consumers to predict their pain symptoms. Flexible timing and thus a participant\u0026rsquo;s ability to travel is therefore essential. As (Jan, 25-34) said, \u0026lsquo;If it was in the first couple of days, then I probably need to organize for someone to drive me depending on where it was just because I can\u0026apos;t really manage alone.\u0026rsquo; Five participants expressed interest in receiving the results of blood tests collected as part of the study, or as Naomi (\u0026ge;35) explained: \u0026lsquo;I\u0026rsquo;d be very interested to get them [the results of the blood test] if I was having them regularly.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eGetting an incentive for research participation such as a giftcard that would offset the cost of participation was discussed differently in the various age groups. In the 18- to 24-year-old group, five participants agreed that it would be beneficial to have an incentive for research participation. The request for an incentive parallels concern about problematic high medication costs. It was expressed that a financial incentive commensurate with the effort would be useful. \u0026lsquo;It depends how invasive it is. The more invasive, I think the more incentive there needs to be to get them to stick around.\u0026rsquo; (Melissa, 18-24)\u003c/p\u003e\n\u003cp\u003eIn contrast, in the two older participant groups only two participants indicated an interest in getting an incentive while the majority (10 participants) explicitly stated that an incentive to participate in a research project was not important to them.\u003c/p\u003e\n\u003cp\u003eFinally, participants stated that they access information about studies from endometriosis support groups, social media such as Facebook or Instagram, postings on university\u0026rsquo;s websites, or, in rural areas, at health centers. It is likely that a widespread dissemination of information about future research supports participant numbers. Overall, while the motivation of taking part in research is generally high, there are individual limiting factors that are set within the social context of an individual\u0026rsquo;s life.\u003c/p\u003e\n\u003cp\u003eI think it [the participation in a research project] would really depend like for me, it would depend on what\u0026rsquo;s going on in my life and what the study is measuring for me, it would be dependent on whether I want to be a part of it but I\u0026rsquo;m pretty likely to. (Pam, 25-34)\u003c/p\u003e\n\u003cp\u003eFour main barriers to participation were identified across the participant accounts. The most significant barrier was the requested time commitment for research participation. It was suggested that participation needs to fit into the daily schedule of people with endometriosis, or as Gina (25-34) said, \u0026lsquo;around working hours\u0026rsquo;, as she stated that she does not \u0026lsquo;really wanna take any time off work\u0026rsquo;. Flexibility was stated as a key component for research participation. It should be possible to choose the time of day as well as the days of the week. Jan (25-34) explained, \u0026lsquo;It would depend, for me, what part of my cycle I\u0026rsquo;m in, that\u0026apos;s a big factor for me. At the moment, I go to the pool two to three times a week but not during my period.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eParticipants\u0026rsquo; responses varied regarding the time they could commit to a research study. A number of participants (10/30) stated 2-4 times per week for half an hour to an hour, while others stated either less (a maximum of half an hour to an hour per week as stated by four participants) or more (\u0026lsquo;as much time as it needs to make me feel better\u0026rsquo; (Wendy, \u0026ge;35)). Individual responses included that participation depends on their work situation and the potential benefits of participation.\u003c/p\u003e\n\u003cp\u003eIf you\u0026rsquo;re being really super practical about it, I would think, \u0026lsquo;How much is it helping me the thing you\u0026rsquo;re asking me to do\u0026rsquo;, and also what\u0026rsquo;s the compensation. If it\u0026rsquo;s gonna be something that\u0026rsquo;s really time consuming, I might think, \u0026lsquo;well, I\u0026rsquo;m getting a gift card that\u0026rsquo;s paying my groceries a week\u0026rsquo;, so I\u0026rsquo;ll be able to do that. But if there\u0026rsquo;s nothing in it for me and it might be a placebo drug I\u0026rsquo;m on, it\u0026rsquo;s just gonna feel like a waste of time. I want to be benevolent and help the future of research but I\u0026rsquo;m a selfish human. (Diana, 18-24)\u003c/p\u003e\n\u003cp\u003eIf research-related tasks can be performed at home, two participants reported being more inclined to do so more frequently than if they have to travel to complete the task. Pam indicated that the location would make a difference, saying \u0026lsquo;I think anything that you can do at home, you\u0026rsquo;re more likely \u0026ndash; well, I would be way more likely there to do more frequently.\u0026rsquo; (Pam, 25-34)\u003c/p\u003e\n\u003cp\u003eFor Sakura, if she must travel to participate, proximity is key: \u0026lsquo;If I need to go to Melbourne frequently with that, it\u0026apos;s just a lot to have to do. But if it was available locally, then there wouldn\u0026apos;t be a problem at all\u0026rsquo; (Sakura, 25-34).\u003c/p\u003e\n\u003cp\u003eAs another barrier to participation in endometriosis studies, safety concerns were raised by eight participants: if there is a risk that participation in a research project will increase pain symptoms, participants reported not wanting to participate. Safety with current medication must be ensured. Gina (25-34) stated: \u0026lsquo;My only other thing would be to see if we could link it with our current medical things just so that they\u0026rsquo;re aware of like what\u0026rsquo;s happening and so that they can be built into our plan of care.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eIndividual incompatibilities must be considered when prescribing medication in a research setting, or as Lena (18-24) stated: \u0026lsquo;making sure that they didn\u0026rsquo;t have the herbal supplement, didn\u0026rsquo;t have any contraindications with any of the drugs that the person was taking, 100%, I\u0026rsquo;d be on board.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003eIn research on medical cannabis, safety becomes even more important in terms of long-term effects as stated above and legal issues. Lena explained:\u003c/p\u003e\n\u003cp\u003eI know that I\u0026rsquo;d lose my registration, so making sure that it was legal. When I\u0026rsquo;m drug-tested at work, making sure that I either had some legal documentation to say, \u0026lsquo;I\u0026rsquo;d take this for chronic health condition\u0026rsquo;, or whether it didn\u0026rsquo;t show up in that drug test, I know that sounds hilarious, but just having some form of back-up or even for instance, if we were to go onto this study with medical cannabis, having a letter from the university or from medical practitioner saying, \u0026lsquo;I am currently doing a clinical trial for this, this and this reason\u0026rsquo;, the clinical trial is on medical cannabis, whatever reason. Just making sure my bum was covered at work is a big thing for me. (Lena, 18-24)\u003c/p\u003e\n\u003cp\u003eA minority view stated by four participants trying to conceive was that they did not want to participate in research projects. Overall, issues of conception played a particularly important role in the 25-34-year-old group. The issue was raised both in the context of wanting to conduct research on non-contraceptive treatment options to reduce pain-symptoms and as a concern about participating in research projects, particularly but not exclusively projects exploring medical cannabis. Table 3 provides an overview of the motivators and barriers that shape participation in endometriosis research.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur study found that Australian people with endometriosis, across a broad age range, had several research priorities they felt were currently unmet. This included the importance of a non-invasive diagnosis to help shorten diagnostic delay, a wider range of non-hormonal and non-surgical treatment options, and a focus on understanding the cause and thus developing a cure for endometriosis. Despite the strong interest in participating in research projects, motivated in part by anticipated symptom relief and a desire to help others, several barriers were found, including a high time commitment and cost associated with participating in a research project.\u003c/p\u003e \u003cp\u003ePrevious research has found discrepancies between research priorities as stated by patients or close family members compared to those formulated by healthcare providers and scientists, \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e as demonstrated in the current study. Since dominant personalities may influence the outcome of face-to-face consensus groups,\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e the presence of health-care professionals in priority setting partnerships may lead to endometriosis patients\u0026rsquo; holding back thoughts that can more freely pronounced in a setting without people who are presenting the current system. Comparing the results of the top ten research priorities derived from the Endometriosis Priority Setting Partnership in the UK and Ireland in 2017 that include health care professionals, researchers, and consumers,\u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e and the findings of this research project with endometriosis patients only, the similarities are evident: seven out of nine research priorities are consistent including a desire for a non-invasive diagnostic tool and a range of treatment options. However, when endometriosis patients\u0026rsquo; express their views without being influenced by the presence of health-care practitioners, discrepancies became apparent in terms of indicating an interest in other treatment options than those existing.\u003c/p\u003e \u003cp\u003eFirstly, according to the findings of this study, there is a need for research to develop a non-contraceptive first-line treatment so that seeking pregnancy does not leave endometriosis patients being untreated. Secondly, since participants indicated interest in research on the use of medicinal cannabis and a holistic treatment including coordinated use of CAM therapies, research is needed on the effective CAM to enhance multidisciplinary treatment plans. Since CAM treatment costs are not yet covered by insurance in Australia, future research needs to investigate the effectiveness of non-medical and CAM treatments so that evidence-based decisions about coverage of non-medical treatment options can be made.\u003c/p\u003e \u003cp\u003eBased on the research priority differences between the various age groups, two areas of relevance to research design emerged: participants statements in the 18-24-year-old group indicated an issue with high treatment costs and an interest in an incentive for research participation to balance travel costs. Consequently, low-cost treatment options especially for younger Australians with endometriosis are needed and an incentive for research participation with this age group should be part of research planning. For the middle-aged group, for those who are trying to get pregnant, conception is key for their decision making. This is in line with formerly published research recommendations.\u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e,\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e Researchers need to consider that dropouts due to reproduction is likely in that age group.\u003c/p\u003e \u003cp\u003eConsidering patients\u0026rsquo; needs when designing a research project involving people with endometriosis is assumed to improve research quality. Involving consumers in research design has beneficial effects and leads to higher quality and more clinical relevance because of the unique perspective that consumers can bring to a research project.\u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e In research, co-designs are used to meet the needs of those affected,\u003csup\u003e\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e foster acceptance by target users,\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e offer a more sustainable and effective translation approach into clinical practice, increase the effectiveness of the intervention,\u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e and improve the quality and appropriateness of study design.\u003csup\u003e\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u003c/sup\u003e Tay et al., who reviewed co-design practices in diet and nutrition research, reported that a high percentage (75%) of studies that showed positive outcomes were those that involved end-users in prototype testing, followed by those that assessed user needs to inform intervention focus (67%) and those that involved end-users in pilot testing (67%).\u003csup\u003e30\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eTaking patients\u0026rsquo; needs into account is specifically important in endometriosis research, as high dropout rates have been reported in the literature: Bergqvist et al. reported that 40 out 48 patients did not complete the 18 month-long follow up period.\u003csup\u003e\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u003c/sup\u003e They stated the highest dropout numbers in the placebo groups due to insufficient efficacy. Wright and Redwine stated high dropout rates not only in research but in treatment regiments due to intolerable side effects.\u003csup\u003e\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u003c/sup\u003e Kuivasaari et al. reported a dropout rate of 52.2% by people with stage III/IV endometriosis compared to 38.7% of participants with milder endometriosis in an observational study.\u003csup\u003e\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u003c/sup\u003e These examples indicate that dropouts do not only occur in placebo-groups but depend on an unsatisfying treatment experience and increases in patients with a higher stage of endometriosis \u0026ndash; indicating that patients with a higher burden have more problems to fulfil the requested things in research.\u003c/p\u003e \u003cp\u003eIn consequence, future research can take patients\u0026rsquo; needs defined in this research project into account to make participation more likely and minimize dropout rates. Therefore, it is essential to co-design and co-produce endometriosis-research across the whole research cycle with consumers.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003e A main strength to this project is that the focus groups were run as discussions, where participants were able to respond to each other and get involved in an exchange. These discussions were driven more by participants than researchers and enabled participants to express experiences and opinions freely.\u003c/p\u003e \u003cp\u003eAnother strength is that the recruitment included a wide range of ages and geographical locations, a key consideration in a country as vast as Australia, as the experiences and views from participants did differ by age and those in rural and remote areas have significant challenges that may not be present in urban areas where treatment options are more plentiful.\u003c/p\u003e \u003cp\u003eNonetheless there are limitations that must be acknowledged. Given that the recruitment included Australians only, the findings may not be generalizable to other parts of the world. The challenges of research participation by rural and remote people may not be so pronounced in more densely populated countries. However, it is likely that people around the world who live in rural areas with long distances to major cities face the same problem. Similarly, research priorities are likely to be the same for Australian endometriosis consumers and worldwide.\u003c/p\u003e \u003cp\u003eSecondly, the recruitment via social media allowed to ensure a broad demographic, however, it must be noted that recruitment via social media tends to include those with more severe symptoms and worse quality of life,\u003csup\u003e\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u003c/sup\u003e so those in the community more generally may have less severe symptoms and this may, in turn, change their priorities. However, given the consistency between our findings and those internationally, the impact of this is likely to be minimal.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003ePeople with endometriosis in Australia reported several research priorities including improving non-invasive methods of diagnosis and providing more options for effective non-hormonal treatment strategies, especially those that were viewed as more holistic such as acupuncture and herbal medicine. Medicinal cannabis was a popular target for more research, but other barriers such as driving would also need to be addressed to be a practical option for many. Willingness to engage in research was high, but consideration to the significant and often unpredictable disease people with endometriosis have is vital when developing clinical studies to ensure there is not an undue burden on participants.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCAM Complementary and alternative medicine\u003c/p\u003e\n\u003cp\u003eCBD Cannabidiol\u003c/p\u003e\n\u003cp\u003eED Emergency department\u003c/p\u003e\n\u003cp\u003ePhD Doctor of philosophy\u003c/p\u003e\n\u003cp\u003eTENS Transcutaneous electrical nerve stimulation \u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was provided by the Western Sydney University Human Ethics Committee on 14\u003csup\u003eth\u003c/sup\u003e Feb 2019 (Approval H13131). All research was undertaken according to relevant guidelines outlined in the National Statement on Ethical Conduct in Human Research (2018). Participants provided written informed consent prior to the commencement of the focus groups. \u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003cstrong\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003c/strong\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe anonymized transcripts analyzed for the current publication are available from the corresponding author on reasonable request.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDisclosure Statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMA is the chair of the clinical advisory committee for Endometriosis Australia, the chair of the research committee for Endometriosis Australia and part of the endometriosis expert working group for RANZCOG. All other authors have no disclosures.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFunded by a partnership grant between Western Sydney University and Metagenics Inc.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eNG:\u003c/strong\u003e Methodology, Literature review, Formal analysis, Writing \u0026ndash; Original draft. \u003cstrong\u003eEG:\u003c/strong\u003e Methodology, Contribution to formal analysis and interpretation of data, Writing \u0026ndash; Review \u0026amp; Editing, Supervision. \u003cstrong\u003eAH\u003c/strong\u003e: Writing \u0026ndash; Review \u0026amp; Editing\u003cstrong\u003e. MA:\u003c/strong\u003e Conceptualization, Investigation, Methodology, Collection of primary data, Project administration, Writing \u0026ndash; Review \u0026amp; Editing, Supervision. All authors read and approved the final manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe thank the participants for their time and willingness to share their experiences with us and to all the support and advocacy organisations who supported this research including Endometriosis Australia, QENDO, EndoActive and the Pelvic Pain Foundation of Australia.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eRowlands IJ, Abbott JA, Montgomery GW, Hockey R, Rogers P, Mishra GD. Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. BJOG An Int J Obstet Gynaecol. 2021;128(4):657\u0026ndash;65. \u003c/li\u003e\n\u003cli\u003eSeear K. The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Soc Sci Med. 2009;69(8):1220\u0026ndash;7. \u003c/li\u003e\n\u003cli\u003eRubinsky V, Gunning JN, Cooke-Jackson A. \u0026ldquo;I Thought I Was Dying:\u0026rdquo; (Un)Supportive Communication Surrounding Early Menstruation Experiences. Health Commun [Internet]. 2020;35(2):242\u0026ndash;52. Available from: https://doi.org/10.1080/10410236.2018.1548337\u003c/li\u003e\n\u003cli\u003eBerker B, Seval M. Problems with the diagnosis of endometriosis. Women\u0026rsquo;s Heal. 2015;11(5):597\u0026ndash;601. \u003c/li\u003e\n\u003cli\u003eArmour M, Sinclair J, Ng CHM, Hyman MS, Lawson K, Smith CA, et al. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: an Australian survey. Sci Rep [Internet]. 2020;10(1):1\u0026ndash;9. Available from: https://doi.org/10.1038/s41598-020-73389-2\u003c/li\u003e\n\u003cli\u003eO\u0026rsquo;Hara R, Rowe H, Fisher J. Managing endometriosis: a cross-sectional survey of women in Australia. J Psychosom Obstet Gynecol. 2022;43(3):265\u0026ndash;72. \u003c/li\u003e\n\u003cli\u003eMelis I, Litta P, Nappi L, Agus M, Melis GB, Angioni S. Sexual Function in Women with Deep Endometriosis: Correlation with Quality of Life, Intensity of Pain, Depression, Anxiety, and Body Image. Int J Sex Heal. 2015;27(2):175\u0026ndash;85. \u003c/li\u003e\n\u003cli\u003eNiekerk LM Van, Schubert E, Matthewson M. Emotional intimacy, empathic concern, and relationship satisfaction in women with endometriosis and their partners. J Psychosom Obstet Gynecol. 2021;42(1):81\u0026ndash;7. \u003c/li\u003e\n\u003cli\u003eArmour M, Lawson K, Wood A, Smith CA, Abbott J. The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PLoS One. 2019;14(10):1\u0026ndash;12. \u003c/li\u003e\n\u003cli\u003eHorne AW, Saunders PTK, Abokhrais IM, Hogg L. Top ten endometriosis research priorities in the UK and Ireland. Lancet [Internet]. 2017;389(10085):2191\u0026ndash;2. Available from: http://dx.doi.org/10.1016/S0140-6736(17)31344-2\u003c/li\u003e\n\u003cli\u003eEstimates of Funding for Various Research, Condition, and Disease Categories (RCDC) [Internet]. 2018 [cited 2022 Oct 2]. Available from: https://report.nih.gov/funding/categorical-spending#/\u003c/li\u003e\n\u003cli\u003eAs-Sanie S, Black R, Giudice LC, Gray Valbrun T, Gupta J, Jones B, et al. Assessing research gaps and unmet needs in endometriosis. Am J Obstet Gynecol [Internet]. 2019;221(2):86\u0026ndash;94. Available from: https://doi.org/10.1016/j.ajog.2019.02.033\u003c/li\u003e\n\u003cli\u003eAustralian Government Department of Health. National Action Plan for Endometriosis [Internet]. 2018 [cited 2019 Jan 12]. Available from: http://www.health.gov.au/internet/main/publishing.nsf/Content/endometriosis\u003c/li\u003e\n\u003cli\u003eArmour M, Avery J, Leonardi M, Van Niekerk L, Druitt ML, Parker MA, et al. Lessons from implementing the Australian National Action Plan for Endometriosis. Reprod Fertil. 2022;3(3):C29\u0026ndash;39. \u003c/li\u003e\n\u003cli\u003eVercellini P, Meana M, Hummelshoj L, Somigliana E, Vigan\u0026ograve; P, Fedele L. Priorities for endometriosis research: A proposed focus on deep dyspareunia. Reprod Sci. 2011;18(2):114\u0026ndash;8. \u003c/li\u003e\n\u003cli\u003eGreene AD, Lang SA, Kendziorski JA, Sroga-Rios JM, Herzog TJ, Burns KA. Endometriosis: Where are we and where are we going? Reproduction. 2016;152(3):R63\u0026ndash;78. \u003c/li\u003e\n\u003cli\u003eRogers PAW, Adamson GD, Al-Jefout M, Becker CM, D\u0026rsquo;Hooghe TM, Dunselman GAJ, et al. Research Priorities for Endometriosis: Recommendations from a Global Consortium of Investigators in Endometriosis. Reprod Sci. 2017;24(2):202\u0026ndash;26. \u003c/li\u003e\n\u003cli\u003eDiagnosis and therapy of endometriosis. Guideline of the DGGG, SGGG and OEGGG (S2k-Level, AWMF Registry No. 045/015 [Internet]. [cited 2020 Sep 9]. Available from: http://www.awmf.org/leitlinien/detail/ll/015-045.html\u003c/li\u003e\n\u003cli\u003eBoote J, Telford R, Cooper C. Consumer involvement in health research: A review and research agenda. Health Policy (New York). 2002;61(2):213\u0026ndash;36. \u003c/li\u003e\n\u003cli\u003ePandey S, Porter M, Bhattacharya S. What women want from women\u0026rsquo;s reproductive health research: A qualitative study. Heal Expect. 2015;18(6):2606\u0026ndash;15. \u003c/li\u003e\n\u003cli\u003eBrady PC, Horne AW, Saunders PTK, Thomas AM, Missmer SA, Farland L V. Research priorities for endometriosis differ among patients, clinicians, and researchers. Am J Obstet Gynecol. 2020;222(6):630\u0026ndash;2. \u003c/li\u003e\n\u003cli\u003eArmour M, Cave AE, Schabrun SM, Steiner GZ, Zhu X, Song J, et al. Manual Acupuncture plus Usual Care Versus Usual Care Alone in the Treatment of Endometriosis-Related Chronic Pelvic Pain: A Randomized Controlled Feasibility Study. J Altern Complement Med. 2021;27(10):841\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eErlingsson C, Brysiewicz P. A hands-on guide to doing content analysis. African J Emerg Med [Internet]. 2017;7(3):93\u0026ndash;9. Available from: http://dx.doi.org/10.1016/j.afjem.2017.08.001\u003c/li\u003e\n\u003cli\u003eRoller MR. A quality approach to qualitative content analysis: Similarities and differences compared to other qualitative methods. Forum Qual Soc Res [Internet]. 2019;20(3). Available from: https://www.qualitative-research.net/index.php/fqs/article/view/3385/4486\u003c/li\u003e\n\u003cli\u003eKeeney S, Hasson F, McKenna H. The Delphi Technique in Nursing and Health Research. Chichester, West Sussex: Wiley-Blackwell; 2011. 198 p. \u003c/li\u003e\n\u003cli\u003eJessup RL, Osborne RH, Buchbinder R, Beauchamp A. Using co-design to develop interventions to address health literacy needs in a hospitalised population. BMC Health Serv Res. 2018;18(1):1\u0026ndash;13. \u003c/li\u003e\n\u003cli\u003eSanders EB-N, Stappers PJ. Co-creation and the New Landscapes of Design. Co-Design. 2008;4:5\u0026ndash;18. \u003c/li\u003e\n\u003cli\u003eAndersson N, Nava-Aguilera E, Arostegu\u0026iacute; J, Morales-Perez A, Suazo-Laguna H, Legorreta-Soberanis J, et al. Evidence based community mobilization for dengue prevention in Nicaragua and Mexico (Camino Verde, the Green Way): Cluster randomized controlled trial. BMJ. 2015;351. \u003c/li\u003e\n\u003cli\u003eMitchell C, Burke K, Halford N, Rothwell K, Darley S, Woodward-Nutt K, et al. Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS). Res Involv Engagem. 2020;6(1):1\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eTay BSJ, Cox DN, Brinkworth GD, Davis A, Edney SM, Gwilt I, et al. Co-Design Practices in Diet and Nutrition Research: An Integrative Review. Nutrients. 2021;13(3593):1\u0026ndash;22. \u003c/li\u003e\n\u003cli\u003eBergqvist A, Bergh T, Hogstr\u0026ouml;m L, Mattsson S, Nordenskj\u0026ouml;ld F, Rasmussen C. Effects of triptorelin versus placebo on the symptoms of endometriosis. Fertil Steril. 1998;69(4):702\u0026ndash;8. \u003c/li\u003e\n\u003cli\u003eWright JT, Redwine DB. Treatment of endometriosis\u0026mdash;a special skills module only? Gynecol Surg. 2004;1(2):67\u0026ndash;8. \u003c/li\u003e\n\u003cli\u003eKuivasaari P, Hippel\u0026auml;inen M, Anttila M, Heinonen S. Effect of endometriosis on IVF/ICSI outcome: Stage III/IV endometriosis worsens cumulative pregnancy and live-born rates. Hum Reprod. 2005;20(11):3130\u0026ndash;5. \u003c/li\u003e\n\u003cli\u003eDe Graaff AA, Dirksen CD, Simoens S, De Bie B, Hummelshoj L, D\u0026rsquo;Hooghe TM, et al. Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies. Hum Reprod. 2015;30(6):1331\u0026ndash;41. \u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 to 3 are available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"endometriosis, research priorities, focus groups, unmet needs, Australia","lastPublishedDoi":"10.21203/rs.3.rs-2783391/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-2783391/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003eEndometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions and therefore determining where to prioritise these limited funds is vital. Research priorities may differ between affected individuals and clinicians/researchers. The aim of this research project is to explore research priorities and determinants of endometriosis research from the perspective of people with endometriosis in Australia.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research.\u003c/p\u003e\n\u003cp\u003eParticipants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently wanted research on treatment options for symptom management, with many prioritising non-hormonal treatments including medicinal cannabis and complementary medicine. Others prioritised research on causes of endometriosis to assist with prevention and eventual cure of the disease over research on treatments.\u003c/p\u003e\n\u003cp\u003eThe main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important included the ability to easily access testing centres (e.g. for blood tests) and copies of test results, as were automated data collection reminders and easy data entry to record measurements. Research incentives for younger endometriosis patients and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.\u003c/p\u003e","manuscriptTitle":"Unmet needs of Australians in endometriosis research: a qualitative study of research priorities, drivers and barriers to participation","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2023-04-19 08:16:34","doi":"10.21203/rs.3.rs-2783391/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"35baf62d-692d-451d-949e-013cac4ab3f3","owner":[],"postedDate":"April 19th, 2023","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2023-07-12T10:59:15+00:00","versionOfRecord":[],"versionCreatedAt":"2023-04-19 08:16:34","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-2783391","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-2783391","identity":"rs-2783391","version":["v1"]},"buildId":"WvIrzKhiLBfengagbw6Ux","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}