Bridging the Care Gap in Endometriosis: A Qualitative Study of Tele-Patient-Reported Outcome Measures (telePROM) in Outpatient Follow-Up

A telemedicine follow-up approach combining an endometriosis-specific questionnaire, video/phone consultations, and text messaging with endometriosis specialists was explored using interpretive description methodology. Inductive analysis of patient interviews (n = 21) and observations identified: improved preparation through self-reflection on living with endometriosis, tailored care for me as a person, timely and flexible support to manage daily life, and challenges with patient engagement with telePROM, organized under the overall theme: Bridging the gap: From no man’s land to enhanced selfmanagement of endometriosis. Telemedicine can support care by improving access to specialists and addressing patients’ individual needs. However, patient education and technical support remain essential.Abbreviations ()

Endometriosis is an underdiagnosed, painful, and chronic disease affecting one out of ten women in their reproductive years, causing painful symptoms such as dysmenorrhea, deep dyspareunia, dysuria, and dyschezia, as well as fatigue and infertility (Horne & Saunders, Citation2019; Zondervan et al., Citation2020). Endometriosis is associated with an increased risk of comorbid conditions such as irritable bowel syndrome and cardiovascular events, and overlaps with conditions including migraines and fibromyalgia (Denworth, Citation2025). Endometriosis is a chronic disease requiring long-term follow-up, and as yet has no cure. Consequently, the primary aim of treatment is to reduce pain and improve patients’ everyday lives (European Society of Human Reproduction Guideline Development Group, Citation2022). Despite seeking help (Melgaard et al., Citation2023), patients struggle with having their symptoms recognized (Ballard et al., Citation2006; Bourdon et al., Citation2024; Culley et al., Citation2013; Requadt et al., Citation2024), resulting in delayed diagnosis and treatment, while undermining trust in healthcare professionals (HCPs) (Mikesell & Bontempo, Citation2023; Zale et al., Citation2020). Hall et al. defines trust through five dimensions, competence, fidelity, honesty, confidentiality, and global trust (Hall et al., Citation2001), and trust has proven to be pivotal in healthcare to ensure adherence to treatment and patient satisfaction (Birkhäuer et al., Citation2017; Jneid et al., Citation2018); this applies also to endometriosis care (Gouesbet et al., Citation2023; Mikesell & Bontempo, Citation2023). Moreover, current treatments vary in their effectiveness, and some patients continue to face limitations in participating in social activities, maintaining a full-time job, becoming pregnant, and starting a family (Ballard et al., Citation2006; Yoon et al., Citation2021); factors that may lead women to continue to accept their condition as a “new normal.” Given that standard follow-up procedures do not support patients’ self-management of the disease (Culley et al., Citation2013; Simonsen et al., Citation2020), reduce uncertainty (Yoon et al., Citation2021), or recognize the full impact of endometriosis on patients’ quality of life (Culley et al., Citation2013), new and more holistic approaches in routine follow-up are warranted (European Society of Human Reproduction Guideline Development Group, Citation2022). Studies point to telemedicine as a viable approach in the outpatient management of endometriosis to improve patient satisfaction and clinical outcomes (Balci, Citation2022; Perelmuter & Shin, Citation2024; Radtke et al., Citation2021), for example, via patient-reported outcome measures (PROMs), messaging (text, chat, email), and phone and video consultations (VCs). Telemedicine is defined as the delivery of healthcare services using information and communication technologies, and where healthcare professionals and patients are separated by distance (World Health Organization, Citation2022). Patients’ descriptions of their symptoms and the impact of symptoms on daily life are key to determining endometriosis severity, and PROMs are widely recognized tools for systematically gathering data on a patient’s health status, reported directly by the patients themselves (de Vet, 2011; US Department of Health and Human Services Food and Drug Administration, Citation2009), such as through electronic questionnaires. Further, PROMs can support patient-centered care, patient-initiated follow-up, and the triage of patients, as well as provide data for the future development of precision medicine in endometriosis (Chen et al., Citation2025; Hjollund et al., Citation2023; Nicolas-Boluda et al., Citation2021). Other online care options for individuals living with endometriosis have been tested. For example, the “Endo-App” prescribed by pain specialists, virtual mindfulness-based therapy delivered by a social worker, and an EndoSMS supportive text message program (Miazga et al., Citation2024; Rohloff et al., Citation2024; Sherman et al., Citation2024; Zugaj et al., Citation2024). However, research in telemedicine and PROMs in outpatient follow-up of endometriosis is scant (Hjollund et al., Citation2023; Khan et al., Citation2021; Perelmuter & Shin, Citation2024; Wang et al., Citation2023). This study explores a novel follow-up approach for endometriosis patients supported by telemedicine: namely, tele-patient-reported outcome measures (telePROM). Tele-patient-reported outcome measures (telePROM) consists of a PROM, which is an endometriosis-specific questionnaire (EQ), and VCs combined with text messaging (chat) supported by an endometriosis care team, all delivered in an app called ‘Mit Sygehus’ [My Hospital] and through web browsers (https://mit.rsyd.dk). This study aims to generate knowledge on alternative models of care in endometriosis, including telemedicine and the use of PROMs, to inform and improve treatment and care pathways. The research question was: How do patients experience and engage with the telePROM-supported outpatient follow-up of endometriosis?

Design This qualitative study was guided by the principles of interpretive description (ID). ID is a qualitative research methodology with an application-oriented approach aiming to generate new insights into complex phenomena in healthcare that can inform the further development and optimization of clinical practice (Thorne, Citation2016). Tele-patient-reported outcome measures (telePROM) is a complex intervention, requiring many adjustments during implementation among patients and HCPs, and ID provided the study with the flexibility to make adjustments as the study progressed (Handberg & Jensen, Citation2021), as unexpected findings could necessitate further investigation to answer the research question. Two patients assisted the researchers throughout the study, including discussion of the study aim and pilot testing of the interview guide, and during preliminary data analyses. Setting and Intervention The study was undertaken at a single endometriosis outpatient clinic at a Danish university hospital. Patients from the region of Southern Denmark who have or are suspected of having endometriosis are referred to the clinic, leaving many patients with a transportation time of 2 to 4 hours per visit. Traditional follow-up in endometriosis was based on fixed physician consultations at intervals of 3, 6, or 12 months. Implementing a more flexible patient-initiated follow-up supported by telePROM was done stepwise. An endometriosis-specific questionnaire (EQ) was validated (Feenstra et al., Citation2025), which contained 54 questions (Supplementary File A) about endometriosis symptoms; for example, pain during and between periods, infertility, sexual function, and mental and general well-being. Further, two free-text questions enabled patients to add further information about (A) specific health issues and (B) the most important topics for the patients to discuss during consultation. The EQ serves as a screening tool to assess patients’ need for consultation, supported by a severity algorithm using a color-code system (e.g., green, yellow, or red). A significant problem within an item is indicated by red color, a mild to moderate problem by yellow color, and no problem by green color. The ‘Mit Sygehus’ app was chosen to distribute the EQ to patients and to provide patients with VCs and text messaging (chat). The app also contained patient information about endometriosis as a disease, treatment options, the purpose of the EQ, and how to complete the questionnaire. Patients received access to the features in the app when referred to the endometriosis outpatient clinic and throughout their follow-up. Patients automatically received the EQ 14 days prior to a planned consultation, and answers were stored in the patient’s electronic medical record. When necessary, patients could contact the endometriosis team through the chat function. The maximum response time for the endometriosis team was three days, with no responses provided during weekends. Nurses specializing in endometriosis were responsible for answering messages, reviewing patients’ EQ responses, and triaging accordingly to make sure patients were booked for an appropriate appointment with a physician or nurse by either video, phone, or an in-clinic visit. Tele-patient-reported outcome measures (telePROM) is visualized in . Physicians and nurses from the endometriosis team had received technical and communicative training in using PROMs during consultations with a specific focus on VCs, except for one HCP who joined the endometriosis team at a later stage. Further, nurses received ongoing education in endometriosis treatment to provide nurse-led consultations and were trained in triage and how to respond to messages in the app. Patients were informed about telePROM elements in their appointment letter and by app notifications. A technical support hotline (phone) was available for patients and HCPs during weekdays. Additional patient information was provided during consultations. Study Participants Only participants with endometriosis as a main diagnosis that had been verified by histology or radiology were eligible for the study (European Society of Human Reproduction Guideline Development Group, Citation2022). Participants had to be aged ≥18 years and able to read Danish. Exclusion criteria were poor mental health (e.g., under psychiatric evaluation, having a severe mental disorder, or being psychologically vulnerable, assessed by the HCP in the endometriosis outpatient clinic), newly referred patients, and patients without a personal identifier (MitID), which was required for completing the PROM. In total, 21 participants were included (). The EQ was completed prior to consultation by only 18 participants, as we chose to include nonresponders of the EQ as the study progressed. Data Generation Data were generated between January and June 2023 by the first author. Convenience sampling was applied, but as the data generation process progressed, purposive sampling was utilized to ensure variation in the study population and to capture different perspectives of telePROM, for example, younger participants and participants who had been rescheduled due to their EQ response. Observations were conducted at the outpatient clinic by the first author, supported by an observation guide focusing on the aim of the study (J. P. Spradley, Citation2016) (Supplementary file B). Virtual consultations, by phone and video, were limited to 20 minutes, and in-clinic visits were 30 minutes, sometimes including a physical examination. Field notes were made during participants’ consultations, capturing not only what was said in words, but also body language, technical problems, clinical practice, and behavior. The individual semi-structured interviews were conducted face-to-face in the outpatient clinic in a private room (n = 4) or by video (Webex) (n = 16), depending on the participant’s preferences. One participant chose phone due to a poor network connection. An interview guide was formed based on the research question. The guide included open-ended questions, which were followed by elaborate and more specific questions (Kvale, Citation2009; J. Spradley, Citation2016a) (Supplementary file C). Responses not related to the guide were pursued if deemed relevant; for example, patients elaborated on communicating through text messaging and having VCs with HCPs. Afterward, notes were made, including initial reflections on what was said and observed during the interviews. The interviews were carried out within five days after the consultation to minimize recall bias. A single interview was scheduled 13 days after the consultation due to the personal circumstances of the participant. The first author conducted the interviews, which lasted for 12 to 65 minutes and were recorded and transcribed verbatim. Data Analysis All data were analyzed inductively through four steps, as described in ID (Handberg & Jensen, Citation2021). Initial coding was performed in NVivo (Alfasoft, Citation2025) and concurrent throughout the data generation process (Handberg & Jensen, Citation2021; Thorne, Citation2016). After the first eight interviews, the first author and coauthors CN and AS discussed the content of the codes and made necessary adjustments to the interview guide; this was repeated after the inclusion of another 10 participants. Finally, a thorough reading of all observations notes and transcripts was conducted to gain an overall impression of the data and to search for patterns and relations across the data. The codes were grounded in the data and most reflected the themes in the interview guide, for example, elements of telePROM. The analysis was supplemented by visualizing themes and codes on paper to gain further insights into possible relationships and patterns within the data. Critical appraisal was stimulated during the analysis by continuously asking “What am I seeing?” and “Why am I seeing this?”. This led to further categorization (Handberg & Jensen, Citation2021; Thorne, Citation2016). The iterative analysis process of going back and forth between the original data set and tentative themes ultimately led to the final thematic findings (). The consolidated criteria for reporting qualitative research (COREQ) checklist and the International Committee of Medical Journal Editors (ICMJE) recommendations guided the reporting of the findings (International Committee of Medical Journal Editors, Citation2025; Tong et al., Citation2007). Ethics Participants were approached face-to-face before their in-clinic visit and informed of the study prior to their decision to participate. When either a video or phone consultation was planned, initial consent was collected by the HCP and additional information was given by the first author by phone. Participants provided written informed consent after being given time to decide on participation. The study was approved by the Data Protection Agency of the Region of Southern Denmark (jrn.nr 20/35407).

Four themes were identified as to participants’ experiences of the telePROM-supported follow-up: Improved preparation through self-reflection on living with endometriosis, Tailored care for me as a person, Timely and flexible support to maintain daily life, and Challenges with patient engagement with telePROM. The four themes are organized under the overall theme “Bridging the gap: From no man’s land to enhanced self-management of endometriosis” and are illustrated in . Bridging the Gap: From No Man’s Land to Enhanced Self-Management of Endometriosis The overall theme “Bridging the gap: From no man’s land to enhanced self-management of endometriosis” captures and reflects the variety of patient experiences with telePROM when integrated in outpatient follow-up. The combination of the elements in telePROM, for example, the chat, virtual consultations, and EQ, complemented each other, enabling timely and relevant support with endometriosis management. Lack of recognition and support prior to diagnosis had left participants in a “no man’s land” in their self-management of symptoms: Well, I’ve really been at a point in my life where I didn’t want to see a doctor […]. They ignored the fact that I was in pain […]. And all of a sudden, I feel like contacting [the HCP through] the My Hospital app […]. Because I feel heard, and I feel that there is actually someone who can do something for me. (Participant 20) Improved Preparation through Self-Reflection on Living with Endometriosis Many participants were positive toward the EQ, as it enabled them to reflect on their disease, current symptoms, and general well-being. This was important, as several participants reported that living with endometriosis and daily pains was just a normal part of their daily life. Further, symptoms such as pain and irregular bleeding could often be difficult to recall and describe during consultations, and by means of the EQ participants became aware of symptoms that were important to report: I wasn’t aware that there were so many symptoms that I should be paying attention to. I was always just told that my frequent urination was the bladder that couldn’t be emptied completely, […] but suddenly it was linked to endometriosis. (Participant 20) Moreover, receiving the EQ made participants feel heard: for the first time during their course of disease, for some participants. Most participants reported enduring many turbulent years, struggling to obtain a diagnosis, and experiencing long waits when referred to an endometriosis specialist, which they described as being in a “no man’s land.” The EQ was perceived as an element of care, and participants felt the HCPs had a genuine interest in and cared about them as patients: “It gives you a feeling that someone’s keeping an eye on you. That things are caught if something should suddenly change” (Participant 3). It seemed that the EQ enabled patients to feel recognized for their symptoms by the HCPs and facilitated trust in the HCPs, thereby supporting the patient–HCP relationship. For some participants, the EQ reminded them of being sick, which made them emotional. However, one participant reflected that endometriosis itself was a constant reminder every month, regardless of the EQ. Tailored Care for Me as a Person Some participants experienced that their answers in the EQ facilitated consultations that not only concerned symptoms of endometriosis but were also tailored to and addressed the participant’s overall well-being. Important topics or worries addressed in the free text field drew the HCPs’ attention to the needs of participants regarding the self-management of their condition. Moreover, the EQ enabled conversations about sensitive topics that otherwise might not have been brought up by the participant: It’s nice that there are so many questions because then you know that all the problems that may exist are being taken care of. I think people fear addressing whether it hurts when you have sex […]. It might be easier if you can tick [it] off and someone else starts the conversation. (Participant 7) Many participants had a wish to see the same HCP in order to feel secure and maintain continuity, which had often not been met. However, participants who had completed the EQ prior to the consultation and where HCPs actively referred to their EQ responses during the consultation felt that the HCPs were well prepared and had a better understanding of their situation. As one participant expressed, “It makes us closer” (Participant 3). Despite the short duration of the consultations, which were generally under 20 minutes, with some lasting only 7–10 minutes, participants felt that all important issues were addressed: I feel that she took her time. And I also liked that she looked at the questionnaire, and that she could then ask about what I had answered […]. I think we got all the way around […]. Both regarding the treatment, but also concerning painkillers, and what you can do. (Participant 4) Moreover, the EQ enabled the introduction of nurse-led consultations. Participants reflected that nurses referred to the questionnaire more often than physicians. In joint consultations with nurses and physicians, observations revealed that some physicians mostly focused on the participant’s medical history in the electronic medical record and on ultrasound imaging, whereas the nurses had the EQ responses displayed on their computer screen. A participant viewed this as teamwork and a natural division of tasks between physicians and nurses, yet participants felt the nurses knew them better, as they had read their EQ responses. In addition, participants experienced that the nurses sought advice from physicians when in doubt. This in combination with the nurses’ active use of the EQ made the participants feel secure and satisfied with consulting a nurse. Thus, the participants reflected that the EQ opened up more possibilities for receiving support from endometriosis specialists in nurse-led consultations, which was highly valued. Timely and Flexible Support to Manage Daily Life The participants emphasized a need for timely and flexible support in managing their condition and maintaining daily life. Prior to the use of telePROM, participants described difficulties in gaining access to endometriosis specialists. By using the chat, participants felt satisfied with being able to contact the endometriosis team immediately, such as when additional questions occurred after the consultation or regarding medical treatment. Participants also described the chat as an effective way to self-initiate or coordinate a future consultation, for example, due to worsening of symptoms or requesting to have a hormonal intrauterine device changed under general anesthesia. Time was saved in receiving competent advice directly from endometriosis specialists and securing reassurance and clarification within a given timeframe. Participants experienced that communicating via chat prevented unnecessary consultations, as issues were resolved online, potentially reducing the pressure on in-clinic consultations: I suddenly had a night where I was bleeding like crazy […]. I wrote to the nurse and she replied the very next morning. […]. And that was actually very reassuring. (Participant 14) Moreover, flexibility in managing daily life was reflected in the participants’ appreciation of the convenience provided by phone or VCs with an endometriosis specialist. Many participants struggled with symptoms and worked reduced hours to manage work, family, and social activities; therefore, the offer of phone or VCs provided minimal disruption to everyday life. Further, some participants associated in-clinic visits with stress and anxiety due to the physical examination or simply from being in the hospital setting. The virtual consultations made some participants feel more at ease and were often held at home or at work. For some participants, a phone call was sufficient, but VCs were considered optimal when addressing private issues, as the visual image of the HCP made the VC seem more personal than a phone call: Well, if you just talk on the phone, you can’t see the person. You can only assume that she is sitting there now and making facial expressions at you while you are sitting there pouring your heart out. […] It’s more personal to sit and look at each other than talking on the phone. (Participant 5) Thus, it appeared that patients’ preferences about the mode of consultation varied with regard to the agenda of the consultation. Challenges with Patient Engagement with telePROM Several participants problematized the HCP not addressing their EQ answers during consultation. This left an impression that the HCPs were not properly prepared. Further, when the HCPs were not technically confident in providing participants with VCs, it led to disappointment and feelings of irritation, which affected the participants’ motivation and engagement with telePROM: I think it’s the first time they’ve gone through my questionnaire. Sometimes I’ve thought: Why is it that I …?” Then I almost don’t bother, do I? Because what do they use it for? (Participant 6) I was told that if I ever have any questions, I could write to them. But at first, I didn’t really use it because I didn’t really know what to ask. […] I didn’t really know if fatigue was a symptom of endometriosis, or how much pain I had to be in to write to them. (Participant 20)

Our study found that the telemedicine model telePROM was relevant in outpatient follow-up for endometriosis and bridged the gap between participants experiencing limited access to endometriosis specialists and their need for timely, flexible, and tailored support. Telemedicine has already shown positive effects in the management of several chronic diseases, such as hypertension, diabetes, and rheumatoid arthritis (Ma et al., Citation2022), but telemedicine in endometriosis needs further research. Other studies have confirmed that PROMs can enhance communication between patient and HCP (Detmar et al., Citation2002; Grove et al., Citation2023) and potentially support trust, shared decision-making, and the self-management of symptoms. Many of our participants had experienced years of dismissal before diagnosis and trust had been undermined, and which has been described as a communication gap in endometriosis care (Bullo, Citation2020; Culley et al., Citation2013). However, telePROM seemed to bridge this gap, supporting trust in HCPs, as defined through the five dimensions by Hall et al. The competences and fidelity of HCPs have shown to be particularly important for patients with endometriosis, reflecting HCPs’ understanding of disease and treatment as well as acknowledging patients’ symptoms and experiences (Mikesell & Bontempo, Citation2023). Importantly, the patients in our study felt acknowledged and taken seriously when provided with the EQ to complete and also when the EQ was consistently used by HCPs during consultations. Many participants wished to see the same physician, but the participants who experienced HCPs who actively referred to their EQ response during the consultation felt that the HCP was better prepared. The active use of the EQ could support fidelity and thereby trust in the HCPs, possibly mitigating participants’ need to see to the same physician. Additionally, allowing sensitive topics to be raised was valued by the participants in our study, which was similarly observed in epilepsy, kidney, and cancer care (Grove et al., Citation2023; Mejdahl et al., Citation2020; Thestrup Hansen et al., Citation2024), and supported confidentiality and trust in the HCPs. However, the timing of questions within the patient’s disease trajectory can be of importance (Thestrup Hansen et al., Citation2024) to ensure the relevance of questions and thereby adherence. This was also found among our participants, who valued that many EQ questions were optional to answer, such as concerns about fertility or partner relationship. Mistrust in HCPs affects treatment adherence (Grundström et al., Citation2020) and can prompt patients to seek information through online communities (Grundström et al., Citation2020; Nielsen et al., Citation2023) or on the Internet. However, the online information is of inconsistent quality (Dinh et al., Citation2022), and patients’ ability to critically evaluate online health information is influenced by their digital health literacy (Ban et al., Citation2024). This stresses the importance of telemedicine initiatives focusing on supporting both trust-building in the patient–HCP relationship and patients’ digital health literacy. Despite most HCPs having received technical and communicative training in PROMs and VCs, participants reported that some HCPs were challenged in the use of telePROM, for example, referring to the EQ during consultation or conducting the VC. This finding might indicate a need for ongoing training of HCPs to ensure consultations of high quality and to fully utilize the potential of telePROM. Such training would further strengthen trust in the patient–HCP relationship, supporting patient-centered care and shared decision-making, and optimizing treatment outcome and patient satisfaction. Our study found that virtual consultations provided a flexible and relevant option for receiving support while maintaining daily routines among participants. However, it is essential to remain attentive to individual preferences regarding telemedicine. Phone consultations in gynecology have been found to be appropriate for discussing intimate issues (Khan et al., Citation2021), and VCs following surgery for endometriosis have been found to be a relevant alternative to in-clinic visits (Mezes et al., Citation2022). Notwithstanding, results are inconclusive due to the small study populations. Our study adds to the limited knowledge of using VCs in endometriosis care, addressing that the content and purpose of the consultation influence patients’ preferences regarding the type of consultation—for example, favoring phone over video. Further research into the factors shaping these preferences could enhance patient triage and inform clinical decision-making. This needs to be further researched regarding what factors influence patients’ preferences for virtual consultations, that is, video or phone, and the agenda of the consultation. Furthermore, patients with endometriosis have advocated for chat communication to improve access to endometriosis care (Remes et al., Citation2023). Our study demonstrates not only improved access to specialist advice, but also that participants experienced being able to better plan their follow-up through chat communication, thereby preventing unnecessary consultations. A systematic review by de Jong et al. found that asynchronous communication between chronically ill patients and HCPs could have positive effects on health behavior, including decreased physician visits and increased self-management/self-efficacy and health outcomes, both physical and psychosocial (de Jong et al., Citation2014). This is beneficial for patients with endometriosis in terms of better self-management of symptoms in their daily lives, as well as potentially reduced waiting times for consultations. Yet the results of the review are not conclusive, and, as in our study, they did not observe a pattern concerning age in the use of asynchronous communication. Thus, support should be available for those in need regardless of age, disabilities (such as dyslexia), or other challenges. Despite our efforts to provide invitation letters, a support hotline (phone), and information during consultations, our study still identified challenges with patient engagement in telemedicine. It is essential to address these challenges to guide clinical practice and future research. Our findings showed that for some participants, an insufficient introduction to telePROM was a barrier to their engagement. Another barrier to telePROM could be patients’ digital health literacy. Digital health literacy combines health and digital literacy and ranges from patients’ ability to seek, find, and comprehend health information to utilizing digital tools and resources in healthcare (Ban et al., Citation2024), for example, communicating online, using the app to complete the EQ, and participating in VCs. An update of Norman and Skinner’s eHealth Literacy model to version 3.0 further emphasizes the importance of people engaging effectively and safely with digital technologies, as security and privacy concerns are present today (Milanti et al., Citation2025). Gaining health information through digital platforms and tools and translating, critically evaluating, and aligning knowledge with their health goals empower patients to make informed choices to enhance their overall quality of life (Ban et al., Citation2024). Furthermore, it not only requires critical thinking skills but also conscious thinking, relying on self-awareness, sensory insight, clarity, and emotional control to make decisions and guide actions (Milanti et al., Citation2025). This is particularly important in patient-initiated follow-up, as it is vital for patients to be well informed and able to access digital health information to manage their condition, and to notice and respond promptly to important symptoms (Newton et al., Citation2022), to prevent deterioration of their health, daily functioning, and everyday life. Yet our participants expressed a need for more knowledge about endometriosis, particularly when newly diagnosed. Patient education programs are offered in other chronic diseases, such as diabetes, rheumatoid arthritis, and kidney and heart disease (Adiewere et al., Citation2018; Corr et al., Citation2023; Knudsen et al., Citation2024; Shaw et al., Citation2011). However, to our knowledge no evidence-based patient education program has been implemented in Danish hospital-based endometriosis centers except for piloting guided self-determination (Simonsen et al., Citation2020). Information meetings about endometriosis and treatment options are offered to patients by some hospitals. In patients with rheumatoid arthritis, a digital patient education program has shown promising results regarding increasing patients’ self-efficacy and thus their self-management skills, with a potential reduction in outpatient consultations (Knudsen et al., Citation2024). Low levels of digital health literacy in patients and the absence of an evidence-based endometriosis patient program could prevent patients from engaging sufficiently in telemedicine-supported follow-up; therefore, this should be further researched with a focus on supporting patients’ digital health literacy. Strengths and Limitations One limitation of our study was the exclusion of participants with poor mental health, and consequently we cannot conclude whether telePROM is a relevant solution for this patient group. Moreover, the presence of the first author during observations could have enhanced the HCPs’ focus on utilizing the EQ during consultations, with only 5 out of 18 consultations not referring to the EQ. Reflecting upon patient recruitment, HCPs were for example asked whether patients had completed the EQ, which may have unintentionally drawn additionally attention to the EQ. Such observational bias was met by doing observations without recruiting patients at the same time and not interfering with HCPs’ daily routines. These observations confirmed HCPs not referring to the EQ during the observed consultations, with several participants also reporting that HCPs did not use the EQ prior to the observed consultations in this study. Finally, we were only able to recruit one patient whose consultation had been rescheduled based on her EQ responses, resulting in her being seen by a nurse instead of a physician. This could reflect that patients’ initial appointments were already aligned with their current symptom burden reported in the EQ, or that telePROM-supported patient triage had not been fully adopted in clinical practice during the study period. Therefore, we were not able to fully explore participant experiences of telePROM-supported triage, highlighting the need for further investigation of patient triage supported by telePROM. Regarding representative credibility (Thorne, Citation2016), a strength of this study was the variation in participants’ characteristics, such as age and consultation type. Second, since telePROM was implemented in 2019, participants were likely already familiar with the initiative, as it can be assumed they have attended consultations at the clinic since then—especially given that endometriosis often requires multiple consultations over the course of the disease. The substantial data collection period also enabled ongoing analysis, as described in ID (Thorne, Citation2016). Consequently, as the study progressed and was informed by ongoing analysis, adjustments were made during the data generation process; for example, the inclusion criteria were modified and the interview guide was revised. Interpretive authority was sought by applying an established method for analysis (ID) (Thorne, Citation2016), by working inductively, and through ongoing discussions with coauthors CN and AS during analysis. Further, providing a table of the analysis process () increased transparency. Since the first author was involved in the development and implementation of telePROM, a written preconception statement was formulated by the first author prior to initiating the study to support the authors in enhancing reflexivity throughout the research process (Thorne, Citation2016). The purpose of the statement was to make the researcher’s prior knowledge and engagement with telePROM explicit, as this could potentially influence data generation, analysis, and interpretation. The statement served as a tool for reflection within the research team, allowing people to critically examine data generation, analysis, and interpretations and to ensure that analysis was not prematurely closed. In addition, the statement serves as a transparent account for readers and contributes to the trustworthiness of the study where the researcher is closely involved with the intervention and setting of the study. In addition, to reduce potential bias regarding researcher subjectivity (Thorne, Citation2016), ongoing discussions with coauthors CN and AS throughout data collection and analysis were applied, further promoting reflexivity during the study.

Our study is one of the first to investigate the telePROM telemedicine model, which consists of a PROM combined with virtual and nurse-led consultations together with the possibility of messaging with endometriosis specialists. We found that telePROM was experienced as relevant when integrated in the outpatient follow-up of endometriosis, as it increased access to endometriosis specialists and bridged a gap in current endometriosis care. Furthermore, telePROM positively supported the patient–HCP relationship, with the potential to support trust, better continuity in care, and shared decision-making, with respect for patients’ individual preferences. Yet for telePROM to be fully utilized, HCPs need to be provided with technical and communicative training, and patients need information about and access to technical support in using telePROM that focuses on patients’ digital health literacy. Finally, telePROM cannot stand alone. An essential finding of our study was the need for a patient education program in endometriosis, preferably implemented in the early stage of diagnosis. Ethical Statement Approval from the Data Protection Agency of the Region of Southern Denmark was granted (jrn.nr 20/35407) for this study. Approval from the local Ethics Committee was not required according to Danish law. All patients in this study gave written informed consent to participate. Supplemental material Supplementary file A the EQ.docx Download MS Word (93.6 KB)Supplementary file A the EQ.docxSupplementary file C Interview guide.docx Download MS Word (32.9 KB)Supplementary file C Interview guide.docxSupplementary file B Observation guide.docx Download MS Word (26.6 KB)Supplementary file B Observation guide.docxAcknowledgments A grateful and enormous thank you to all the patients who shared their personal experiences about outpatient follow-up and living with endometriosis. In addition, a huge thank you to the two patients affiliated with the research team throughout the whole research process for giving valuable insights and feedback to the research team. Finally, thank you to OPEN, Open Patient data Explorative Network (https://www.sdu.dk/da/forskning/open), at Odense University Hospital in Denmark for providing assistance with data storage and data analysis software as well as NVivo courses. Disclosure Statement No potential conflict of interest was reported by the authors. Data Availability Statement The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research, supporting data are not available. Additional information Funding

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