Symptom tracking for endometriosis: a systematic review protocol for mobile applications focused on content, inclusivity and features

Endometriosis is a chronic inflammatory gynaecological condition characterised by the growth of endometrial-like tissue outside the uterus. The most common symptoms of endometriosis are severe pain, symptoms evoking organ dysfunction and infertility, affecting approximately 2%–10% of women globally and up to 50% of those struggling with infertility. 1 The disease remains poorly understood, and there is no known cure, resulting in limited treatment options. Diagnosis is often delayed by an average of 7 years due to various factors, including patients normalising or concealing symptoms and healthcare system issues where symptoms are frequently dismissed or misunderstood. 2 3 Misdiagnosis is common, with conditions such as irritable bowel syndrome or pelvic inflammatory disease often mistaken for endometriosis, further delaying proper treatment. 4 5 Many general practitioners also lack sufficient knowledge of endometriosis, making its diagnosis and treatment more challenging. 6 7 Treatment options, such as surgery and hormone-suppressing medications, offer temporary relief but are associated with high recurrence rates. Up to 50% of patients experience recurring pelvic pain within 5 years after surgery. 8 9 Owing to the limitations of these treatments, interest in non-surgical, non-pharmacological approaches to improve the quality of life for individuals with endometriosis has increased. 10 The nature and severity of endometriosis symptoms correlate poorly with the extent of lesions and the stage of the disease. Moreover, tracking all the symptoms associated with endometriosis is complex, as they vary according to the cycle and the person involved. 11 Symptom tracking in chronic illness encompasses the regular observation and tracking of alterations in both the physical and emotional well-being of individuals living with long-term health conditions. 12 Symptom tracking in chronic illness may involve (1) self-assessment (regularly measuring vital signs, tracking symptoms and observing changes in behaviour and psychological well-being); (2) increased awareness (tracking for potential side effects of medications and tracking fatigue levels during daily activities) and (3) condition-specific observation (specifically observing for symptoms related to a particular chronic illness). 13 This practice plays a vital role in optimising health outcomes and enabling prompt medical and health interventions. 13 Thus, the use of symptom diaries is necessary to document symptoms as accurately as possible, and these diaries have proven effective. 14 Electronic versions of these symptom diaries are highly relevant. 15 Among endometriosis patients, mobile apps designed to track menstrual cycles and pain symptoms have become increasingly popular. Approximately 40% of patients report using these apps, and many are open to sharing their data for research purposes, suggesting that these tools could improve our understanding of the condition. 16 However, there is still a gap in the integration of menstrual and endometriosis-specific symptom tracking within these apps. While symptom diaries, particularly digital ones, have proven effective in tracking symptoms, a comprehensive tool combining both menstrual and endometriosis symptom tracking could enhance patient outcomes and healthcare management. 14 15 Mobile app solutions are emerging as valuable tools for supporting symptom tracking. These tools allow patients to track their symptoms in real time, improve communication with healthcare providers and help patients document their condition more accurately. 17 However, while mobile app solutions have potential benefits, concerns about quality, inclusivity and accessibility remain. Ensuring that these tools are culturally relevant, user-friendly and accessible to diverse patients, including ethnic minorities and underserved groups, is key to maximising their effectiveness. Despite their potential benefits, mobile health apps face several barriers to inclusion, especially for marginalised groups. These barriers include challenges with data entry, loss of interest and the cost of apps, all of which disproportionately affect underserved populations. 18 19 Furthermore, ethnic minorities are often under-represented in the research and development of these tools, limiting the generalisability and applicability of findings. To ensure equitable outcomes, patient-reported outcome measures (PROMs) need to be adapted to reflect the diverse experiences of all affected groups. 20 22 This study seeks to systematically evaluate mobile applications for tracking endometriosis symptoms and answer the following questions: what are the levels of evidence-based content, inclusivity, data protection and quality of mobile applications specifically dedicated to symptom tracking? The first phase will therefore identify available endometriosis-related mobile apps (the main objective of the app, its target audience, available languages, the country of development, the payment requirement, the last update, the number of downloads, etc). No evaluation will take place at this stage. On the basis of the information gathered in this first phase, the second phase focuses more specifically on mobile applications dedicated to tracking endometriosis symptoms, which constitutes the main objective of this systematic review. We evaluate their level of evidence-based content, quality, data protection and inclusivity.

The research team will be expanded to include all the necessary expertise required to ensure the quality and success of this project. It comprises various stakeholders involved in addressing endometriosis: healthcare professionals providing care for individuals with endometriosis (such as specialised doctors and nurses), an information systems specialist, a digital health specialist, several individuals living with endometriosis from under-represented groups and an expert in health inclusion. Particular attention will be given to ensuring diversity in sociocultural and ethnic backgrounds, varying levels of health and digital literacy, different stages of endometriosis, a range of age groups and diverse gender identities. This study began on 1 July 2024 and will be completed on 30 April 2026. This study follows the methodology proposed by Gasteiger et al 23 to conduct a systematic review and assess commercially available mobile applications for tracking endometriosis symptoms from an inclusive perspective. The methodology consists of seven steps to ensure a thorough and high-quality evaluation. These steps include (1) defining research objectives and questions, (2) exploring available applications, (3) determining eligibility criteria, (4) selecting apps, (5) extracting, (6) analysing data and (7) synthesising results. Step 1: research objectives and research questions This step involves formulating the research question via the TECH (Target user, Evaluation focusm Connectedness, Helath domaine) framework, which emphasises the target user, evaluation focus, connectedness and health domain ( table 1 ). This systematic review has two objectives: Objective 1: the first objective of this study was to conduct a systematic review to describe all commercially available mobile applications related to endometriosis. This objective aims to answer the following research question: what are the characteristics of mobile applications related to endometriosis (the main objective of the app, its target audience, available languages, the country of development, the payment requirement, the last update, the number of downloads, etc)? Objective 2: the second and main objective of this study is to build on the outcome of the first objective by selecting among the retrieved apps those that specifically focus on endometriosis symptom tracking. These apps will be fully tested by end-users, healthcare professionals and researchers for their level of evidence-based content, inclusivity, data protection and quality. This objective aims to answer the following research question: what are the levels of evidence-based content, inclusivity, data protection and quality of mobile applications specifically dedicated to symptom tracking? Step 2: research strategy and exploratory research To identify suitable apps, an app aggregator ( https://appagg.com/ ), the App Store and Google Play will be used. Appagg filters only apps from the Apple App Store and Google Play, which together account for 88.057% of the mobile application market in 2024. 24 For objective 1, AdS will perform research on Appagg via the keyword “endometriosis”. Among the retrieved apps, there should potentially be some dedicated to symptom tracking, related to objective 2. For each retrieved app, the most recent available version will be retained for analysis. Steps 3 and 4: definitions of inclusion and exclusion criteria and app selection These steps describe the eligibility criteria and the app selection outcomes. For objective 1, the apps’ characteristics will be extracted and integrated into an Excel file. After removing duplicates, three independent reviewers will screen the app descriptions and exclude those that do not meet the inclusion/exclusion criteria depicted in table 2 . This will provide the first outcome: a list of available apps related to endometriosis. Discrepancies will be resolved by consensus between the three reviewers. For Objective 2, a filter will be applied to this list to include/exclude apps according to the second-round inclusion/exclusion criteria presented in table 2 and will be added to only those apps that focus on symptom tracking. This will provide outcome 2: list of all apps focusing on symptom tracking for endometriosis ( table 2 ). The results of these selection processes are pictured in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. 25 26 Step 5: Data extraction The characteristics of the included app and all relevant information will be imported into an Excel file. For objective 1, the data charting will include the following information (cf. table 3 ): Two reviewers independently pilot tested the apps and the data will be charted on the basis of the first two selected apps. Step 6: app analysis For objective 2, the app is evaluated according to four criteria: The evidence-based content level will be evaluated through an evidence-based list of all endometriosis symptoms on the basis of a literature review and validated endometriosis specialists (NP and LAM) from the Reproductive Medicine Division of Lausanne University Hospital. This list includes 10 areas (pain, localisation of pain, digestive symptoms, urinary symptoms, sexual life, psychophysical symptoms, impact on activities and quality of life, hormonal cycle and fertility). The items included in these 10 areas are answered via a dichotomous response (present/absent depending on whether the symptom is listed in the app). For several domains (pain, localisation of pain, digestive symptoms, urinary symptoms, sexual life, psychophysical symptoms and impact on activities and quality of life), if the symptom is present, three other criteria are evaluated according to whether the intensity of the symptom can be listed (yes/no), whether the frequency can be listed (yes/no) and whether the duration can be listed (yes/no). The first score, ‘symptom present’, will be calculated depending on whether the symptom is present in the app (regardless of the possibility of recording its frequency, duration and intensity). This score can range from 0 (none of the 10 symptoms are listed) to 10 (all symptoms are present). A second score, ‘symptom complete’, is calculated depending on whether the presence, frequency, intensity and duration of symptoms can be rated in the app. This score can range from 0 (none of the 10 symptom descriptors are present) to 27 (all symptom descriptors are present). Overall quality will be assessed via the validated Mobile App Rating Scale (MARS), 27 which also meets the COnsensus Standards for the selection of health Measurement INstruments. 28 The scale comprises 19 items divided into four domains (engagement, functionality, aesthetics and information quality) and an additional subjective quality scale of four items, 29 evaluated on a 5-point Likert scale from 1 (inadequate) to 5 (excellent). MARS (Mobile App Rating Scale) is suitable for evaluating mobile healthcare applications and has the advantage of having a user/patient version. 30 Inclusivity criteria were developed on the basis of the diversity/equity/inclusion criteria used by Ramos et al . 31 The purpose of their scoping review was to determine the extent to which the evaluation frameworks used to assess the app covered the diversity/equity/inclusion criteria. 31 The 10 criteria are divided into three areas: (1) access (internet connectivity, data usage, costs and system requirements), (2) content (language, literacy, adaptation to the environment, adaptation to specific needs and adaptation to identity) and (3) appearance (visual representation adapted to diversity). To assess the level of data protection offered by the application, we added a question with a 4-point Likert scale: 0, ‘no privacy policy or not found’; 1, ‘privacy policy does not detail data confidentiality or security’; 2, ‘privacy policy mentions adherence to specific data security and confidentiality rules’ and 3, ‘explicit compliance with a security or confidentiality standard’. This scale was developed specifically for this study. The evaluation domains will be distributed within the research team (see table 4 ). First, all the apps are evaluated by research team members according to their professional specialties. LAM and COB will review all the apps for the evidence-based, quality and inclusivity domains. LR and AdS review all the apps for the data protection domain. Given that the ‘evidence-based domain’ criterion is certainly the most important for an app dedicated to symptom tracking, and in order not to overload endometriosis patients, only the three apps with the highest levels of evidence on the basis of the ‘symptom present’ score will be evaluated by endometriosis individuals as end-users. The apps will be fully evaluated by four members of the research team ( tables4 6 ). Only the three apps with the highest levels of evidence based on the ‘symptom present’ score will be evaluated by endometriosis individuals as end-users. Only the three apps with the highest levels of evidence based on the ‘symptom present’ score will be evaluated by endometriosis individuals as end-users. The three apps that will receive the highest overall scores across the four criteria will be submitted to 10 people with endometriosis for evaluation of quality and inclusivity criteria. 10 people with endometriosis will be recruited from different sociocultural and ethnic backgrounds, different levels of health and digital literacy, different stages of endometriosis, different age ranges and different genders to complete the app reviews. The extracted data will be saved in an Excel spreadsheet for systematic comparison and synthesis. Step 7: synthesising results This step focuses on synthesising and comparing the evaluations of the selected apps. The findings will be reviewed to identify strengths and areas for improvement if they are present. People with endometriosis and the public were not involved in the first steps of application selection. However, people with endometriosis will be recruited through patients’ associations to evaluate the applications selected for objective 2.

This systematic review of applications will offer an overview of available apps that can be downloaded in Switzerland. Furthermore, it will present a detailed analysis of those that are specifically geared towards symptom tracking and will evaluate the level of evidence-based content, inclusivity, data protection and quality. A key strength of this review is its multidisciplinary approach, which involves engaging experts in healthcare, digital technology, inclusivity and people with lived experiences of endometriosis. This should provide valuable guidance to individuals affected by this condition. These findings will not only empower people with endometriosis in selecting appropriate tools for self-tracking and symptom management but also inform healthcare providers about the strengths and limitations of current apps for symptom tracking in endometriosis patients. The insights gathered from this review will also provide an evidence-based foundation for deciding to test, adapt or develop a tailored, inclusive symptom-tracking application that could be implemented directly in clinical practice at the University Hospital of Lausanne (CHUV), Switzerland. By incorporating PROMs, such an application could enable healthcare providers to personalise care plans more effectively, ultimately improving clinically relevant outcomes for diverse people with endometriosis. Finally, this study could have implications for healthcare education by identifying critical app features that enhance patient engagement and self-management. These findings may guide training for healthcare professionals in effectively integrating digital tools into practice, supporting a patient-centred approach to endometriosis care and symptom tracking. Approval from an ethics committee is not required. Data and material will be available on request from the authors. We will share our findings through multiple channels, tailored to different audiences. We will present at public conferences within institutions and publish scientific manuscripts in international and French journals. Additionally, we will present at relevant local and international conferences. Authorship will adhere to the International Committee of Medical Journal Editors’ guidelines.