Exploring endometriosis community needs to co-create the EndoZone digital health platform: a qualitative research study

The Design Thinking framework [ 24 ] consisting of five stages (empathise, define, ideate, prototype and test) was used to guide the qualitative needs assessment and co-creation of EndoZone. The first two stages (empathise and define) were used in this study to facilitate the needs assessment, enabling systematic assessment of community needs [ 25 ] through semi-structured focus group discussions. The Design Thinking Framework facilitates co-creation through community involvement, which can lead to better utilisation of programs for community empowerment [ 26 ] and was therefore appropriate to address the aims of this study. Theoretical approaches in qualitative research can be understood as a continuum with one approach called ‘Realism’ positioned at one end of the continuum, and ‘Relativism’ positioned at the other. ‘Realism’ states that reality exists and can be accessed through empirical research, while ‘Relativism’ is experienced subjectively and differs from one person to another [ 27 ]. The ‘critical realist’ approach sits midway on this continuum and seeks to understand reality through empirical research but acknowledges that reality is shaped by individual experiences and knowledge [ 27 ]. A ‘critical realist’ approach was most suited to this study as it allowed for exploration of reality through empirical research while appreciating that individual experiences impact reality [ 27 ]. The consolidated criteria for reporting the 32-item checklist of qualitative studies guided the reporting of this study [ 28 ] (Supplementary file 1). This study was conducted in accordance with the Australian National Statement on Ethical Conduct in Human Research and the Australian Code for the Responsible Conduct of Research, 2018. Ethics approval was granted by the University of Adelaide Human Research Ethics Committee (Approval number: H-2020-013). The sample size for the focus group discussions was estimated by applying the concept of ‘information power’ which states that, ‘the larger information power the sample holds, the lower the number of participants is needed’ [ 29 ]. The concept involves assessing the dimensions of five items: (i) study aim, (ii) sample specificity (iii) established theory, (iv) quality of dialogue, and (v) analysis strategy [ 29 ] (Supplementary file 2). The application of information power allowed us to reflect on our sample size and information richness that this sample would contribute [ 29 , 30 ]. Further, in keeping with the qualitative methodology, the number of participants was continually reviewed as the study progressed, to ensure that a diversity of participants’ experiences and needs were explored [ 31 ]. This resulted in 36 participants participating in the focus groups. The study was advertised via social media accounts of the endometriosis associations ( n  = 4) in Australia. These were EndoActive, Endometriosis Australia, Pelvic Pain Foundation of Australia and QENDO. Interested participants clicked on the link in the advertisement and filled out an expression of interest form along with demographic questions (age and postcode) and contact details (contact number and email address). A total of 389 valid expressions of interest were received. Valid responses included those who met the eligibility criteria: (i) age 16 years and above, (ii) residing in Australia, (iii) ability to communicate in English, (iv) experiencing symptoms of endometriosis and/or pelvic pain or (v) supporting someone experiencing symptoms of endometriosis and/or pelvic pain (e.g., parents or partners). Participants were excluded if they did not (i) experience symptoms of endometriosis and/or pelvic pain, (ii) were unable to communicate in English, (iii) did not live in Australia or (iv) were not supporting someone with endometriosis/pelvic pain. From the 389 valid expressions of interest, a cross-section of participants experiencing symptoms of endometriosis and/or pelvic pain were selected through purposive sampling to ensure a mix of ages and geographical locations. Focus groups were homogenised based on (i) age: 16–18 years (young women’s group) and ≥ 19 years (adults), and (ii) geographic location: based on urban and suburban vs. regional and remote postcodes as determined by the Australian Bureau of Statistics Remoteness regions criteria. Based on the sample size criteria, 36 participants participated in the focus group discussions. A total of 353 people were not included. Separate focus groups were conducted for those supporting people living with endometriosis (i.e., parents and partners). Participants were initially contacted by email or phone to confirm their willingness to participate in a focus group, then a participant information sheet and consent form were sent by email with details regarding the time and date of the focus groups. Consents were electronically returned by participants or audio recorded before the start of each focus group. Eight semi-structured focus group discussions were conducted across Australia during March, April and May 2020. Two focus groups were conducted with young people aged 16–18 years diagnosed with or experiencing symptoms of endometriosis or pelvic pain ( n  = 9), four focus groups with participants aged ≥ 19 years diagnosed with or experiencing symptoms of endometriosis or pelvic pain ( n  = 19). The supporters’ focus groups consisted of one parents’ group ( n  = 3, mothers) and one partners’ group ( n  = 5; male partners) (Table 1 ). Focus groups were audio and video recorded. Table 1 Categories of focus groups with the number of participants Category Number of participants Young Group Regional (16–18 years) 6 Young Group Metro (16–18 years) 3 Metro Group 1(19 years +) 5 Metro Group 2 (19 years +) 4 Northern Region Group (19 years +) 6 Southern Region Group (19 years +) 4 Partners Group 5 Parents Group 3 Categories of focus groups with the number of participants One focus group (Metro Group 1) was conducted face-to-face, while the remaining seven were conducted online due to COVID-19 lockdown restrictions. A semi-structured interview guide (Supplementary file 3) was developed and pilot-tested among the research team ( n  = 6) to facilitate discussions. The interview guide included questions involving people’s experiences of living with endometriosis, challenges faced, things that helped or are missing in endometriosis management and participants’ needs for an endometriosis digital health platform. Minor changes were made to the interview guide after the pilot-test. These changes included reiterating the contact details of organisations that participants could potentially contact, if they experienced upsetting thoughts while participating in the focus groups. Minor language changes were also made, such as using the term ‘we’d like to hear alternate viewpoints’ instead of saying ‘feel free to disagree with each other’. Informed consent was obtained from all participants before starting the focus group discussions. The focus groups were co-facilitated by two researchers (DS and RO) and notes were maintained. A representative from one of the Australian endometriosis associations (n = 4) was invited to attend each discussion. All participants received an e-gift card valued at Australian dollar (AUD) 80.00 as a token of appreciation for their time. NVIVO 12 qualitative analysis software (QSR International, Massachusetts USA) was used to transcribe, store and organise the focus group transcriptions. Each transcript was coded to protect anonymity and checked for errors by two independent researchers (DS and RO). Braun and Clarke’s reflexive thematic analysis method was used to analyse the data [ 32 ] (Supplementary file 4). An inductive or data-driven approach was undertaken where codes reflected the content of the data [ 33 ]. An experiential orientation to data interpretation which appreciates the thoughts, feelings and experiences of participants as a reflection of their personal states was adopted [ 33 ]. Themes were developed by DS and RO and final themes were approved by all authors. Reflexivity can be described as a set of continuous, collaborative and multifaceted practices that enables researchers to critically acknowledge, appraise, and evaluate their subjectivity and position as a researcher in the research process [ 34 ]. As good research practice and to ensure a rigorous approach [ 35 ], DS maintained a reflexive journal throughout the duration of the focus group discussions [ 35 ] to document initial thoughts and reflections on the focus groups and research process. DS and RO employed strategies such as using a focus group discussion guide with open-ended questions to facilitate discussions and maintained a project debrief record to reflect and refine the research process. The project debrief record helped to assess how each focus group was conducted, what went well and thoughts on how to improve future sessions. It is important to acknowledge the characteristics, assumptions and beliefs of the research team when undertaking this research project. All authors acknowledge their experience of living in a high-income country and the team is multidisciplinary with practising clinicians who are researchers in the endometriosis, pain and digital health area. Of the seven authors, six identify as females and some acknowledge their experiences of living with chronic conditions.

The average age of participants experiencing symptoms of endometriosis or pelvic pain was 26.8 years while that of supporters was 39.7 years. The majority of participants experiencing symptoms (53.6%) and supporters (75%) lived in major Australian cities. Participants were located throughout Australia with the majority living on the eastern coast. The average duration of the focus group discussions was 1 h 55 min. Table 2 presents key participant characteristics. Table 2 Key participant characteristics Characteristics People diagnosed with or experiencing symptoms of endometriosis Supporters of someone living with endometriosis Average age years (range) 26.8 years (16–47 years) 39.7 years (25–58 years) Location - % (n)  Major City 53.6% (n = 15) 75.0% (n = 6)  Inner regional 10.7% (n = 3) 25.0% (n = 2)  Outer regional 32.1% (n = 9)  Remote 3.6% (n = 1) Education - % (n)  Primary School 10.7% (n = 3) -  Secondary School 28.6% (n = 8) 25.0% (n = 2)  Diploma 25.0% (n = 7) 50.0% (n = 4)  University degree 32.1% (n = 9) 25.0% (n = 2)  Post Graduate degree 3.6% (n = 1) - Speak English at home - % (n) 88.9% (n = 24) 87.5% (n = 7) Key participant characteristics The analysis identified three overarching needs: (1) A central hub to access endometriosis information (2), Holistic strategies for managing symptoms and (3) Unique features to support the digital user experience (Fig. 1 ). Fig. 1 Thematic map showing the relationship between themes and sub-themes Thematic map showing the relationship between themes and sub-themes This theme explored endometriosis information-related needs. Most participants highlighted the need for a central evidenced-based source of information as they reported finding it difficult to find credible information on endometriosis online. Some participants reported feeling overwhelmed when looking for digital information. They wanted a central hub where different types of information were easily accessible in one location. Four sub-themes exploring different information needs were developed including (a) the need for endometriosis education, (b) addressing normalisation of period pain, (c) navigating the healthcare system and (d) support resources for different users. Most participants wanted credible evidence-based endometriosis-related information so they could learn more about endometriosis. Participants desired information on the causes, symptoms, diagnosis and treatment of endometriosis. Some participants wanted information on the pre-diagnosis journey, and what to expect during and after diagnosis. Those undergoing surgery desired information on post-operative recovery (e.g., how long it takes to recover from surgery). When discussing endometriosis treatment, participants mentioned they wanted information on the different types of treatment(s), for example, hormonal and surgical treatment and holistic management of endometriosis. ‘I shouldn’t have to go to search on Google [to] find this [information]. [It] should be in one place’. Participant from the Metro Group 1 (19 + years). ‘I shouldn’t have to go to search on Google [to] find this [information]. [It] should be in one place’. Participant from the Metro Group 1 (19 + years). There was a need to improve community endometriosis awareness particularly to address the normalisation of period pain. Most participants commented that they had difficulty differentiating between normal and abnormal period pain and wanted information to help recognise abnormal symptoms. Many participants reported their period pain symptoms were dismissed or minimised by family and friends. Participants further mentioned that period pain or menstruation was a taboo topic and was not openly discussed. Participants expressed the need for resources that would enable the community to differentiate between normal and abnormal period pain and improve knowledge about endometriosis symptoms and emphasised the need for openly discussing period pain. ‘A lot of people said to me , oh , you’re just pretending you’re not actually in pain. But she [nurse] said , there was a lot of endo. And I was like , so I wasn’t lying. She was like , no , it was very real. And I think I took that picture to send to someone just to prove that it was real’. Participant from the Northern Region Group (19 + years). ‘A lot of people said to me , oh , you’re just pretending you’re not actually in pain. But she [nurse] said , there was a lot of endo. And I was like , so I wasn’t lying. She was like , no , it was very real. And I think I took that picture to send to someone just to prove that it was real’. Participant from the Northern Region Group (19 + years). ‘ It’s that lack of knowledge and education about endo , and I just really think there needs to be a lot more awareness and information out there for everyone about endo and what it is exactly , because I don’t know how many people I’ve mentioned [to] that I’ve had endo and they’ve been like what’s that?’ Participant from the Northern Region Group (19 + years). ‘ It’s that lack of knowledge and education about endo , and I just really think there needs to be a lot more awareness and information out there for everyone about endo and what it is exactly , because I don’t know how many people I’ve mentioned [to] that I’ve had endo and they’ve been like what’s that?’ Participant from the Northern Region Group (19 + years). ‘I think knowledge is the biggest. There [are] so many people that still haven’t heard of it [endo]. It’s been a disease that , was never talked about , and from what I gather from family history , my grandmother may have had it , but you never spoke about women’s troubles , back then and it’s really only been the last few years I’ve come across people who have heard of it. People that are starting to talk about it more , which is great because with knowledge comes a level of understanding [and] support’. Participant from the Southern Region Group (19 + years). ‘I think knowledge is the biggest. There [are] so many people that still haven’t heard of it [endo]. It’s been a disease that , was never talked about , and from what I gather from family history , my grandmother may have had it , but you never spoke about women’s troubles , back then and it’s really only been the last few years I’ve come across people who have heard of it. People that are starting to talk about it more , which is great because with knowledge comes a level of understanding [and] support’. Participant from the Southern Region Group (19 + years). Participants wanted healthcare services-related information to assist them in navigating the healthcare system (public vs. private healthcare system) and finding doctors. Most participants reported financial burden from the cost of treatment and therefore wanted financial information such as inclusions and exclusions under the Australian Government’s Medicare system that provides free or subsidised healthcare services to the community. Some suggested there was a lack of awareness about chronic disease management or mental health plans that led them to pay full fees. Some participants mentioned the need for an ‘endo care plan’ that included a fixed number of sessions with allied health professionals (e.g., pelvic physiotherapists) and alternative medicine practitioners (e.g., naturopathy or acupuncture) which were considered expensive and not covered by public or private health funds. ‘I think that there should be [a] guide as to all the different alternate therapies and how much that could cost , so that you can map out what your treatment [is] going to cost you. What are we going to put on it? Is it 10 grand , 20 grand? to have an adequate service to get better? I think mapping that out and having that visibility would be really helpful’. Participant from the Metro Group 1 (19 + years). ‘I think that there should be [a] guide as to all the different alternate therapies and how much that could cost , so that you can map out what your treatment [is] going to cost you. What are we going to put on it? Is it 10 grand , 20 grand? to have an adequate service to get better? I think mapping that out and having that visibility would be really helpful’. Participant from the Metro Group 1 (19 + years). There was a need to provide resources to support different digital platform users such as (i) students and teachers, (ii) employees and employers, (iii) those residing in rural/remote areas, (iv) supporters (i.e., parents and partners), and (v) young people. Participants reported that endometriosis affected their ability to work and attend school. Most felt their symptoms were not acknowledged at work and school, indicating the need for endometriosis resources to support endometriosis awareness among teachers and employers. These resources should be aimed at raising endometriosis awareness, fostering communication about symptoms, and enabling planning for work or study-related adjustments like flexible work hours, time off due to surgery, extra time for assignments, and special arrangements during examinations like frequent toilet breaks. ‘I was in [the] sick bay. And um I was crying and just wanting to go home because , like , I was dying and she [teacher] just looked at me and she was like , “oh , you gotta go back up to class. This is ridiculous. Stop being like this”. It took a lot of convincing for our teachers at my school to really believe me , which was horrible’. Participant from the Young Group Metro (16–18 years). ‘I was in [the] sick bay. And um I was crying and just wanting to go home because , like , I was dying and she [teacher] just looked at me and she was like , “oh , you gotta go back up to class. This is ridiculous. Stop being like this”. It took a lot of convincing for our teachers at my school to really believe me , which was horrible’. Participant from the Young Group Metro (16–18 years). ‘I’ve got a part time job with Surf Life Saving [state] and my boss is [a] 25 [year old] female. I had told her two months in advance that I was having my surgery , I’ll need at least a week off. She rostered me on for two days later and I kind of called her and [said] , um look I can’t do that. And she still made me go to work and then got really upset when I was having trouble. [I was] on the beach in a little crouched position about to cry because I [was] in so much pain’. Participant from the Northern Region Group (19 + years). ‘I’ve got a part time job with Surf Life Saving [state] and my boss is [a] 25 [year old] female. I had told her two months in advance that I was having my surgery , I’ll need at least a week off. She rostered me on for two days later and I kind of called her and [said] , um look I can’t do that. And she still made me go to work and then got really upset when I was having trouble. [I was] on the beach in a little crouched position about to cry because I [was] in so much pain’. Participant from the Northern Region Group (19 + years). Most partners reported feeling confused about how to support their partners with endometriosis. They wanted endometriosis-related resources for self-education, to assist with sensitive conversations like intimacy and fertility issues and strategies to support their partner with endometriosis (e.g., assisting during pain flares, or questions to ask during medical appointments). Parents expressed similar needs and wanted information on self-management strategies to assist children with endometriosis. They also expressed financial stress due to the cost of treatment. One parent mentioned that alternate medicine was useful but expensive. Similar to the needs expressed by those with lived experience of endometriosis, parents also expressed the need for endometriosis health care plans. ‘I think , if you’ve got information about how to navigate the medical system like , what can be covered under Medicare? What can’t be covered under Medicare? Like my daughter has had her appointments with a psychologist and [it is] under the mental health care plan. So therefore, we get a certain number for free or it’s very heavily subsidised. But people don’t always know that. And same with physio. Apparently, you can get that too’. Participant from the Parents Group. ‘I think , if you’ve got information about how to navigate the medical system like , what can be covered under Medicare? What can’t be covered under Medicare? Like my daughter has had her appointments with a psychologist and [it is] under the mental health care plan. So therefore, we get a certain number for free or it’s very heavily subsidised. But people don’t always know that. And same with physio. Apparently, you can get that too’. Participant from the Parents Group. Young participants reported that most available endometriosis information was unrelatable or unsuitable for their age group. For example, most available information described fertility-related implications, which was overwhelming for the younger audience. They felt it was difficult to have endometriosis-related conversations with their peers. Young participants wanted age-specific information that was more relatable and less overwhelming. Those living in rural and remote areas struggled with obtaining evidence-based endometriosis information and wanted information on healthcare providers close to their location. ‘Yeah , I had a few people ask me if I was going to get my eggs frozen. And I was like I’m 17 , having to think about that it’s horrible. Like , the fear of losing something. You don’t really understand it as much. It’s scary to think about it’. Participant from the Young Group Regional (16–18 years). ‘Yeah , I had a few people ask me if I was going to get my eggs frozen. And I was like I’m 17 , having to think about that it’s horrible. Like , the fear of losing something. You don’t really understand it as much. It’s scary to think about it’. Participant from the Young Group Regional (16–18 years). This theme explored the use of holistic strategies to manage symptoms, including allied health, complementary medicine and the use of self-care strategies (e.g., using a heat pack, exercise or mindfulness apps) to manage symptoms. Most participants reported using some form of holistic management and/or self-management strategies to manage their symptoms to support their (a) physical wellbeing, and (b) psychological wellbeing, and desired details of allied health professionals and/or complementary and alternate medicine practitioners. Most participants reported researching various pain management strategies on the internet and wanted reliable evidence-based information on managing pain and improving physical health. Pelvic physiotherapy, transcutaneous electrical nerve stimulation (TENS) machines, light exercises, yoga, stretching, massage, and heat packs were commonly used to manage pain. Some participants reported making changes to their diet, while some used alternate medicine like naturopathy, Traditional Chinese Medicine (TCM) or acupuncture to reduce pain. Participants wanted a broad range of evidence-based strategies for pain management and physical wellbeing to choose from to assist with symptom management. ‘I think that there should be almost like um a guide as to all the different alternate therapies and how much that could cost so that you can map out what your treatment will look like and how much it’s going to cost you’. Participant from the Metro Group 2 (19 years +). ‘I think that there should be almost like um a guide as to all the different alternate therapies and how much that could cost so that you can map out what your treatment will look like and how much it’s going to cost you’. Participant from the Metro Group 2 (19 years +). ‘Create something that’s quite holistic. So , if it was me that would design it , I think I’d want it to be something that covers kind of all aspects of what endometriosis affects’. Participant from the Young Group Metro (16–18 years). ‘Create something that’s quite holistic. So , if it was me that would design it , I think I’d want it to be something that covers kind of all aspects of what endometriosis affects’. Participant from the Young Group Metro (16–18 years). Most participants reported using self-management strategies for psychological wellbeing, such as relaxation methods, journaling, mindfulness or meditation apps like “Headspace [ 36 ] and Calm” [ 37 ] and reading positive quotes. Some participants found cognitive behavioural techniques (CBT) useful in managing psychological wellbeing. Participants wanted a broad range of evidence-based strategies along with self-help guides to support their psychological wellbeing. ‘I’ve been practising mindfulness as well as just doing yoga. And I’ve started teaching mindfulness at work. I find that it helps to just keeping me calm and accepting what is sort of thing at times’. Participant from the Southern Region Group (19 years +). ‘I’ve been practising mindfulness as well as just doing yoga. And I’ve started teaching mindfulness at work. I find that it helps to just keeping me calm and accepting what is sort of thing at times’. Participant from the Southern Region Group (19 years +). This theme explored participants’ desired features in an endometriosis digital platform. Most participants expressed the need for (a) personalised just-in-time information, (b) building a digital community and (c) user design and interface needs. Most participants desired personalised information that was relevant to their circumstances or symptoms at that time, for instance, participants requested a symptom checker to determine whether their period pain symptoms were normal. Others requested symptom-tracking functions to monitor their menstrual cycles and other symptoms including pain and bloating. Some participants wanted to maintain a digital record of their medical/health history and medications. Participants wanted a forum where endometriosis specialists answered their questions and asked for personalised web chats with healthcare professionals. ‘Definitely a chat system, maybe not messaging other people, but like people who specialise in it, like doctors, talking to them about your symptoms and actually being able to get advice as to how to treat it’. Participant from the Young Group Metro (16–18 years). ‘Definitely a chat system, maybe not messaging other people, but like people who specialise in it, like doctors, talking to them about your symptoms and actually being able to get advice as to how to treat it’. Participant from the Young Group Metro (16–18 years). ‘When I went to the doctor first , I kept a handwritten diary literally dated with the day that I had pain , I could tell her what I ate that day. [When] she said , when is your pain? I said , here’s my diary for the last six months. And that was what helped me the most , because she was able to see the patterns in my body at certain times of the month and different things. So I think that would be very helpful in a [digital platform]. When you go to your doctor and the doctor says , when are you at the most pain? You can say , well , during the cycle or [when] I’m ovulating or whatever the case is. that really helped me um explain my symptoms to my doctor’. Participant from the Metro Group 2 (19 years+). ‘When I went to the doctor first , I kept a handwritten diary literally dated with the day that I had pain , I could tell her what I ate that day. [When] she said , when is your pain? I said , here’s my diary for the last six months. And that was what helped me the most , because she was able to see the patterns in my body at certain times of the month and different things. So I think that would be very helpful in a [digital platform]. When you go to your doctor and the doctor says , when are you at the most pain? You can say , well , during the cycle or [when] I’m ovulating or whatever the case is. that really helped me um explain my symptoms to my doctor’. Participant from the Metro Group 2 (19 years+). Participants expressed the need for just-in-time information to manage acute episodes of pain flares or manage symptoms in between doctors’ appointments or surgeries since urgent appointments with healthcare professionals were not always readily available. This included information such as, which healthcare professional to consult, and what type of strategies to try along with step-by-step self-help guides. ‘Information in between appointments , like tips and tricks in between appointments. I think once you’ve got your main specialist and your main surgeon , that’s the most important thing to find. But then to find a really good pelvic pain physio , acupuncturist… , I’d love to see them being included in it and that being really championed as an important way to manage your chronic pain in between surgeries or post-surgery’. Participant from the Northern Region Group (19 years+). ‘Information in between appointments , like tips and tricks in between appointments. I think once you’ve got your main specialist and your main surgeon , that’s the most important thing to find. But then to find a really good pelvic pain physio , acupuncturist… , I’d love to see them being included in it and that being really championed as an important way to manage your chronic pain in between surgeries or post-surgery’. Participant from the Northern Region Group (19 years+). Most participants indicated the need for digital networking and mentioned that it promoted qualities like fortitude, resilience, and compassion for individuals living with chronic pain. Partners and parents expressed the need for digital networking opportunities so they could share and learn from the experiences of other parents and/or partners. Young people desired a digital community that provided opportunities for sharing stories and networking with peers and residents of rural and remote areas wanted to connect with other members of their community. Participants expressed a desire to have a calendar feature on the digital platform which could list a schedule of monthly endometriosis-related activities. Most participants expressed a desire to read about inspiring personal stories of endometriosis journeys from community members and celebrities. ‘More information directed towards different groups of people. So maybe for younger [people], the more online social aspect of just talking to someone online, maybe or less invasive therapies or tips for young people’. Participant from the Young Metro Group (16–18 years). ‘More information directed towards different groups of people. So maybe for younger [people], the more online social aspect of just talking to someone online, maybe or less invasive therapies or tips for young people’. Participant from the Young Metro Group (16–18 years). ‘I guess the access to support groups, I always feel like if you’re in the city, you could, just get together with other girls. I don’t know if people do, but that’s one thing, that I feel is [a] support group’. Participant from the Southern Regional Group (19 + years). ‘I guess the access to support groups, I always feel like if you’re in the city, you could, just get together with other girls. I don’t know if people do, but that’s one thing, that I feel is [a] support group’. Participant from the Southern Regional Group (19 + years). Participants wanted the digital platform as a free, easily accessible and shareable resource, such as a website that used simple, inclusive language with attractive and colourful design features. Participants desired streamlined but complete information that linked to existing endometriosis resources (e.g., to other endometriosis websites). Participants wanted content presented as easy-to-follow self-help guides, videos, factsheets, case studies or scenarios. ‘It’s so important to have that plain kind of language and that clarity , [so] anyone can understand that kind of content easily, you know, like it needs to be proper plain language’. Participant from the Metro Group 2 (19 + years). ‘It’s so important to have that plain kind of language and that clarity , [so] anyone can understand that kind of content easily, you know, like it needs to be proper plain language’. Participant from the Metro Group 2 (19 + years). ‘Maybe have a listing of the websites like [name of an endometriosis website] especially for those people starting out’. Participant from the Southern Regional Group (19 + years). ‘Maybe have a listing of the websites like [name of an endometriosis website] especially for those people starting out’. Participant from the Southern Regional Group (19 + years). ‘Make it free , easy to read and inviting in a way , like , don’t include big , large words that no one can really understand, like easy for people to read, inviting colourful and free to use’. Participant from the Young Group Regional (16–18 years). ‘Make it free , easy to read and inviting in a way , like , don’t include big , large words that no one can really understand, like easy for people to read, inviting colourful and free to use’. Participant from the Young Group Regional (16–18 years).

Our study explored the needs of the Australian endometriosis community and their supporters to inform the co-creation of EndoZone [ 60 ], a digital health platform for endometriosis (Supplementary file 5). There is a need to address the normalisation of period pain and improve community awareness of endometriosis. People with endometriosis commonly use the internet to find information and management strategies to support overall wellbeing. The findings support the co-creation of an endometriosis digital health platform that serves as a central credible source of information, is freely accessible and easily shareable to provide (i) evidence-based endometriosis-related information to address the normalisation of period pain and improve endometriosis awareness, (ii) resources to support various community groups like young people, parents and partners, (iii) holistic strategies to improve overall wellbeing, (iv) features like personalised just-in-time information, and (v) a digital endometriosis community.

The findings of this study addressed improving endometriosis awareness and education, one of the key priorities outlined in the NAPE [ 21 ]. This study explored the digital information needs of the endometriosis community; an important gap found in the literature [ 9 ]. Participants from this study confirmed the value of an endometriosis digital health platform as a central, credible source of information. They highlighted that information should be evidence-based, tailored to various user groups, including those with lived experience, young people, school children, employees, residents of rural and remote locations, and supporters (e.g., parents and partners). The value generation through multiple stakeholder participation enabled the exploration of diverse community needs, demonstrating the usefulness of co-creation. A platform that caters to diverse needs will likely have better uptake in the community. There was a need for improving community awareness about endometriosis and addressing the normalisation of period pain. People wanted information on a single platform, akin to a central hub, covering endometriosis causes, symptoms, diagnosis, treatment modalities, and management strategies for physical and psychological wellbeing. Participants desired personalised just-in-time information to manage symptoms in between doctor’s appointments. They also advocated for a free, easily accessible and shareable resource, with opportunities for digital networking. We found that most participants commonly used the internet to learn about menstruation and endometriosis, similar to a recently published scoping review [ 9 ]. Period pain or dysmenorrhoea is a common symptom of endometriosis, however, since menstruation is considered a taboo topic [ 38 ], it is often not publicly discussed [ 39 ]. Furthermore, people experience normalisation of period pain [ 40 , 41 ] and may lack the knowledge to distinguish between normal and abnormal period pain [ 40 , 42 ], which may cause unhelpful invalidation of a person’s symptoms. Additionally, low community awareness of endometriosis [ 40 – 44 ] may lead to difficulty in recognising symptoms and seeking timely medical attention perpetuating the delay in the diagnosis. Hence, people use the internet to find information [ 9 , 45 , 46 ] on endometriosis and period pain since the internet is perceived as a safe space to talk about taboo topics and can be used conveniently and privately [ 15 ]. However, due to limited or no governance of health information published digitally [ 18 , 19 ], the proliferation of inaccurate and misleading information is a concern. Studies have reported limited accurate [ 9 ] and high-quality endometriosis-related eHealth websites, one study identifying only one out of the 54 assessed [ 19 ] as high quality and another reporting four high-quality websites out of 80 that were assessed [ 47 ]. This indicates a paucity of accurate and high-quality endometriosis information available on the internet and reinforces the sentiments of participants that there is a need for a central, credible digital source of endometriosis information. Our study identified the need to develop resources for various community groups such as students, young people, supporters (i.e., parents and partners) and those living in rural or remote regions. The findings from this study can also be used to address information needs across different stages of an individual’s endometriosis journey, as it varies from the time of diagnosis to several years later or from adolescence to adulthood [ 9 ]. Similar to our findings, an Australian study on adolescents and young women aged 13–25 years found that almost 51% of participants thought their period was normal despite experiencing significant dysmenorrhoea [ 12 ]. Another study reported that 76% of college students aged 19–24 years had heard of dysmenorrhoea for the first time during the research study and 42.4% had heard about endometriosis for the first time [ 48 ]. This indicates the need to develop resources to improve community knowledge on menstruation and endometriosis, which may assist in recognising symptoms. Further, similar to our findings, one study reported that 80% of partners received no information from healthcare providers on how endometriosis impacts couples’ lives (e.g., dyspareunia, financial strain experienced due to costly medications and procedures etc.) [ 49 ]. In the absence of such information, partners could benefit from educational resources on endometriosis [ 40 ]. Furthermore, in this study, we found that all people could benefit from healthcare services-related information like how to navigate the healthcare system, estimated endometriosis treatment costs in public and private facilities and information on locally available healthcare services (e.g., gynaecologists, pelvic physiotherapists, pain specialists etc.). Participants wanted information on holistic strategies to support physical and psychological wellbeing. These strategies are often used to manage endometriosis-related pain. It is common for people with endometriosis to use holistic approaches that include allied health services, complementary and alternate medicine therapies and self-management strategies [ 50 , 51 ]. Similar findings are reported by other studies that indicate endometriosis-related pain negatively impacts quality of life as it restricts people’s ability to attend work and school, and carry out routine activities [ 40 , 41 ]. People experience emotional distress due to pain, strained relationships [ 40 , 44 , 52 ], and fertility concerns [ 44 , 52 ]. Holistic strategies to support physical and psychological wellbeing can assist in improving the quality of life among those affected by endometriosis [ 41 ]. Limitations of medical and surgical treatments may contribute to the use of holistic strategies to improve overall wellbeing [ 40 , 50 , 53 ]. Participants in this study reported using strategies such as exercise, yoga, relaxation, pelvic physiotherapy and transcutaneous electrical nerve stimulation. Similarly, another study reported that heat, rest, meditation or breathing exercises were most commonly used, while cannabis, heat, hemp/CBD oil, and dietary changes were the most effective self-reported measures in pain reduction [ 51 ]. Citizen Endo, an endometriosis patient-centric research platform reported breathing exercises, rest, stretching, and pelvic physiotherapy were commonly used to manage symptoms [ 54 ]. Evidence suggests the scope of utilising holistic strategies for overall wellbeing [ 50 , 53 ]. Access to digital information on holistic strategies could especially help those living in rural and remote regions where healthcare services are limited, involve long waiting times, or the need to travel to cities for specialised care [ 55 ] involving time and cost burden. Given the popularity of online searches for endometriosis [ 9 , 19 , 56 ], digital tools should ideally be leveraged to provide evidence-based information on holistic strategies to support overall wellbeing. The need for personalised information such as symptom tracking that enables tracking of menstrual cycles, endometriosis symptoms, and medication history was a key insight from our findings. Such an approach can help mitigate recall affecting the accuracy of patient-reported measures like frequency of pain and duration of menstrual cycle, which are commonly collected for self-monitoring and in endometriosis research [ 57 ]. Researchers and users have reported the potential for using digital tools like mobile apps for daily electronic accurate recordings which are useful in self and clinical management [ 57 ]. Further, different management strategies suit different people and there is no universal strategy that can benefit all. Here, digital health applications can present personalised management strategies to suit individual needs using machine learning algorithms [ 58 ]. Additionally, the ability to digitally filter information to provide age-appropriate resources is important. For example, in this study, young participants reported feeling overwhelmed by fertility-related information available online. Digital health technologies can sensitively approach fertility topics, directing people to face-to-face consults with qualified healthcare providers to prevent negative emotional experiences [ 52 ]. Further, our findings highlighted that digital networking may help overcome geographical limitations supporting those living in rural and remote areas and can enable people to find community groups of interest like parents, partners or young adults. There are promising results of digital storytelling as a potential therapeutic tool that can enhance the sense of community belonging [ 59 ]. The findings support the digital development of an endometriosis community where people can network and share their personal endometriosis stories. This study qualitatively assessed the needs of an Australian endometriosis population and their supporters to inform the co-creation of an endometriosis digital health platform. Diverse experiences were captured as our participants included people from different age groups, regional and remote areas and supporters across Australia. Our findings address a gap in the literature given the limited studies that have analysed the needs of these various user groups. This study is conducted with a subset of the Australian endometriosis community and may not represent the needs of people with endometriosis in other regions, although our findings are similar to those reported in the global literature. We recruited only English-speaking participants, hence the findings may not necessarily reflect the needs of culturally and linguistically diverse populations in Australia. Lastly, although all parents and partners were invited, only mothers and male partners participated in the focus group discussions, hence the findings may not reflect the needs of fathers and same-sex or gender-diverse partners.

Endometriosis is a chronic inflammatory condition with no known cure [ 1 , 2 ], with prevalence data indicating 10% of women and people presumed female at birth are affected globally [ 1 ]. In Australia, 14% of women born in 1973-78 were estimated to have been diagnosed with endometriosis by age 44–49 [ 3 ]. Symptoms of endometriosis vary and are not well recognised in the community and by health professionals, leading to an average diagnostic delay of 6.7 years globally [ 4 ] and between 6.4 [ 5 ] to 8.1 [ 6 ] years in Australia from the onset of symptoms. Diagnosis can be made with specialised imaging techniques (ultrasonography and magnetic resonance imaging) and/or diagnostic laparoscopy [ 7 ]. The condition is associated with reduced quality of life [ 8 ], reduced productivity, a high rate of absenteeism [ 4 , 9 ] and high treatment costs [ 10 ]. Endometriosis symptoms are often normalised in the community and clinical practice, perpetuating diagnostic delays [ 8 , 9 , 11 ]. Dysmenorrhoea (a symptom of endometriosis) is perceived as ‘normal’ indicating a lack of community awareness about endometriosis [ 12 ]. Qualitative analysis of people’s lived experiences with endometriosis demonstrates the lack of information about endometriosis before and after diagnosis [ 6 ] which is perpetuated due to the lack of medical facilities in rural and remote areas [ 13 ]. Further, people living with endometriosis believe that a low awareness among clinicians leads to delayed diagnosis [ 6 , 9 ]. With the popularity of the internet, especially among the younger population [ 14 ], people search for endometriosis-related information online [ 9 , 14 – 16 ]. ‘What is endometriosis?’ was the third most trending health-related question on Google in 2018 [ 17 ]. Furthermore, people living with endometriosis find online support groups as a space to ‘explore, learn and bolster’ their knowledge of endometriosis [ 15 ]. Concerningly, evaluations of endometriosis-related internet information report incomplete and inaccurate information that may harm users [ 18 , 19 ]. A key priority identified by the not-for-profit group, “Society for Women’s Health Research” was to improve awareness and access to credible evidence-based endometriosis education for the endometriosis community and healthcare providers [ 20 ]. In Australia, the Federal Government launched the National Action Plan for Endometriosis (NAPE) in consultation with the Australian endometriosis community, clinicians, researchers and policymakers in 2018 [ 21 ]. Three key priorities were recognised (i) awareness and education, (ii) clinical management and care and (iii) research [ 19 ]. The EndoZone research group was tasked with co-creating an endometriosis digital health platform. Co-creation of digital health technologies involves collaboration with a wide range of stakeholders (clinicians, community, researchers etc.) and is valuable since it incorporates diverse stakeholder experiences, promotes a smooth transition from testing to implementation and is likely to have better community uptake [ 22 ]. Co-creation of digital health solutions in chronic disease management (diabetes, cardiovascular and respiratory diseases) has led to higher user satisfaction and engagement with digital technologies [ 23 ]. This study aimed to qualitatively assess the needs of the Australian endometriosis community to inform the co-creation of EndoZone: a digital health platform for endometriosis.

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