Barriers and Facilitators Affecting the Care of Patients with Endometriosis: A Scoping Review

This scoping review was carried out in accordance with the PRISMA-ScR guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) 14 . The idea to carry out a scoping review developed out of an exploratory interest in investigating the available literature and the heterogeneity of those studies. The aim was to obtain a comprehensive overview of the international evidence on existing barriers and facilitators which affect the care of patients with endometriosis. A systematic search was carried out in the databases PubMed, CINAHL, PsycInfo and Web of Science between 29 October 2024 and 30 November 2024 to identify potentially relevant publications. A broad search strategy was used in all the databases which combined key words and MeSH terms (Medical Subject Headings) using the Boolean operators “OR” and “AND”. The search terms included “barriers”, “promotion and support strategies”, “endometriosis” and “health care system”. A complete overview of all search terms used is given in Table 1 . A search of gray literature was additionally carried out using Google Search and Google Scholar. The analysis included German-language and English-language publications published between 1 January 2014 and 1 December 2024. All articles which contained verifiable descriptions of barriers and facilitators affecting the care of patients with endometriosis were included. There were no restrictions regarding study design; however, case studies, editorials, and commentaries were excluded as they do not provide empirical data and therefore do not offer direct evidence about care barriers and facilitators. After removing all duplicates, 695 articles were identified. The reference management program Citavi was used to manage the literature. It was used for the structured filing of search results, the identification of duplicates, and to document selection and analysis processes. As a first step, titles and abstracts were screened by one of the reviewers (SB) using inclusion and exclusion criteria. This led to the exclusion of 612 articles. The main reasons for exclusion were: no reference to the care of patients with endometriosis (n = 280), focus of article was on specific diagnostic or therapeutic methods without consideration of barriers or facilitators (n = 160), publication (i.e., commentaries, editorials, or case reports) did not include empirical data (n = 120), or articles were published outside the defined publication period (n = 52). A full-text screening of the remaining 83 articles was carried out in a second step. A second reviewer (AA), who also reviewed the full texts of publications, was consulted in cases of uncertainty. Discrepancies were discussed between the reviewers until they reached a consensus. Neither of the reviewers underwent formal training or calibration. However, the criteria were jointly defined and agreed upon beforehand. A further 44 articles were excluded, eight because their primary focus was on diagnostic procedures and 36 because the outcomes were unsuitable, leaving 39 publications for data extraction and analysis ( Fig. 1 ). Number of articles identified and included in the scoping review. A structured table was generated to extract data. The table included information on: authors, year of publication, country, study design, sample size, target group, key results and described barriers and facilitators. Extraction was done by both reviewers using an iterative process. The studies included in this examination are shown in Table 2 . Based on the 39 included publications, eight main categories were initially developed inductively. These were subsequently assigned to the two overarching categories „barriers“ and „facilitators“.

The identified articles described the challenges which patients with endometriosis face when using health care services and the facilitators which could make it easier to access care services ( Fig. 2 ). The results, subdivided into barriers and facilitators according to main and subcategories, are shown in Table 3 . Illustration of the identified barriers and facilitators (own illustration). Red boxes = identified barriers in health care. Green boxes = identified facilitators. The boxes at the top represent the main categories while the lower boxes are the related subcategories. Of the 39 articles included in this scoping review, six were from the USA 19 21 26 40 44 51 , four from the Netherlands 15 23 28 42 , four from Sweden 17 37 41 48 , three from Australia 29 27 33 and three from Switzerland 18 35 50 and two respectively from Puerto Rico 20 24 , France 29 53 and Brazil 31 34 , although one of these studies 29 assessed both the French and the Australian health care systems. There were single studies from Germany 39 , Norway 32 , the United Kingdom 49 , South Africa 16 , Denmark 22 , Iran 25 , Hungary 30 , Estonia 36 , Ireland 38 , Canada 43 , the Asia-Pacific region 45 , Poland 46 , Northern Cyprus 47 and Kenya 52 . 32 of the publications presented empirical findings while the remaining articles consisted of systematic overviews. The focus of six of the studies was on the health care system in the USA, while only one study focussed on the health care situation in Germany 39 . The majority of patients in the studies were female. Individual studies investigated additional barriers and facilitators from the point of view of experts 19 , medical staff 23 49 50 and treating or specialized gynecologists 34 45 . The identified barriers were grouped into four main categories. They include delayed diagnosis, lack of psychological support, medical care, and structural barriers. Delays in diagnosis are one of the greatest challenges. Many affected women have the impression that their doctors do not have sufficient knowledge about endometriosis and that their symptoms are often interpreted wrongly or overlooked 15 16 17 18 19 23 27 28 30 33 34 35 36 38 40 43 45 46 47 48 49 50 52 . This can lead to misdiagnoses and inadequate imaging 19 20 23 26 27 28 29 34 36 38 39 40 41 43 44 45 47 48 49 52 . It took between six and ten years on average until the correct diagnosis was made 19 45 . Moreover, according to several studies, there often are no standardized guidelines which would help making a diagnosis 23 29 35 46 49 53 . The social normalization of gynecological symptoms and the erroneous assessment of symptoms as “psychosomatic” or “normal” were further aspects contributing to the delays in diagnosis 19 23 24 25 27 28 29 30 35 36 38 39 40 43 45 46 52 . This would then lead to many affected women facing repeated visits to the doctor without their symptoms being adequately considered during their visits 24 36 42 . These experiences could result in frustration and distrust of the health care system among many affected women 22 24 27 . Moreover, many commented that they felt “devalued” or “rejected” and had the impression that health care providers were “insensitive”, “inconsiderate” and “hurtful” 21 24 27 36 40 . A further key barrier which took the form of a lack of emotional support became manifest in the stigmatization and emotional stress experienced by affected women. The social stigma related to gynecological disorders would often result in inadequate support which is caused by a lack of information and education, a lack of empathy on the part of medical staff, and insufficient sensitivity in society 26 35 43 47 50 . This would result in affected women often feeling abandoned and believing that they are not being taken seriously, which could increase emotional burdens such as stress or frustration 18 22 24 25 26 28 29 30 31 32 33 35 38 43 46 48 52 . Studies have emphasized that women felt shame and embarrassment during communications, especially when communicating with male physicians. These affective barriers could result in intimate topics and symptoms not being openly discussed, which would make it even more difficult to arrive at a diagnosis and start treatment 24 35 44 45 . Fear of pain, of complications or of a possible positive diagnosis would produce significant stress, which could inhibit affected patients from utilizing health care services 35 . When evaluating medical care, a further identified barrier was inadequate pain management. Many affected patients reported on their experience of having the feeling that their pain was not adequately treated 18 31 45 46 . Long-term persistent pain could have a significant negative effect on a patient’s professional and private life and reduce the patient’s quality of life 15 19 24 26 30 38 42 48 52 . The inadequate integration of pain therapies into standard care would make it more difficult to offer patient-centered care. The emotional and psychological burdens associated with endometriosis would not be properly taken into consideration which would prevent women from receiving holistic and supportive care 18 . Several studies highlighted structural barriers such as high treatment costs and limited access to specialized care options as a possible barrier 20 27 29 30 34 36 38 39 45 46 47 52 . Coordinated approaches which would permit comprehensive care would be often lacking, especially when the care system is fragmented 15 18 19 20 21 22 23 27 28 34 35 36 37 38 39 43 45 49 . Interdisciplinary cooperation was considered essential to overcome fragmentation and improve interactions and coordination between different service providers. In the context of coping with psychological stresses such as anxiety or depression 19 21 25 30 38 47 52 , affected patients criticized the lack of psychosocial support. A lack of psychosocial support when trying to cope with disease would put strain on patients‘ emotional well-being 16 18 20 21 25 26 36 38 42 46 47 48 51 52 . It is suspected that psychosocial options are not sufficiently integrated in the treatment process 35 . Many facilitators were identified which could improve both access to care and the quality of care. These facilitators were grouped into four main categories: educating and improving the awareness of medical staff and affected persons, interdisciplinary care, patient-centered care, and innovative interventions. Training courses to educate and train medical professionals and large-scale campaigns to raise awareness in affected women could contribute to deepening the knowledge of endometriosis and increasing sensitivity in the general public 15 16 19 20 21 23 25 26 27 28 29 30 31 33 35 41 43 44 45 46 47 49 52 . The integration of such training courses into medical studies 39 could additionally help to sensitize doctors in training early on, which could reduce future delays in diagnosis and consequently improve the quality of care 18 28 35 47 49 . Interdisciplinary approaches to treatment, standardized guidelines and diagnostic protocols were additionally identified as effective strategies 15 19 23 27 28 35 37 43 45 46 53 . They would promote cooperations between different medical specialties and permit a more holistic care which would take into account both psychological and social aspects 16 18 19 21 23 24 26 29 30 33 35 41 44 47 48 . Interdisciplinary 19 26 27 30 35 39 46 51 53 and multidisciplinary teams 17 19 21 27 28 32 35 48 which combine medical, psychosocial and communicative skills were found to offer particularly promising results. Telemedicine platforms which connect different medical specialties could also be used for that purpose 51 . Patient-centered care and a doctor–patient relationship based on trust would be essential to overcome existing barriers 18 22 25 29 30 41 48 49 . Some studies have emphasized the importance of having a fixed gynecological contact 32 37 38 and stressed how important it is to have communications that are culturally sensitive and to have enough time for the patient in terms of reducing fear and shame 16 26 43 . A possible solution would be additional training of gynecologists which would focus on creating an open and supportive environment 22 28 35 . The focus should be on active listening, targeted inquiries about pain symptoms, and the acknowledgement and recognition of symptoms 18 28 29 33 42 44 48 . Patient-centered approaches such as individualized treatment plans which respond to the personal needs of affected patients would make it easier to cope with the disease and would make it possible to provide treatment based on trust 18 19 20 22 25 27 32 33 41 48 . Innovative interventions such as digital technologies and alternative treatment options could contribute to the further individualization and improvement of care 15 18 27 33 41 45 48 . Examples cited in support of this approach were telemedicine programs for pain management and apps which could support affected patients to record symptoms. In addition, digital platforms such as social media could provide emotional support and permit the exchange of experiences 15 16 21 25 27 29 30 32 33 40 41 45 46 51 52 . It is recommended that medical presence on social media be increased to share evidence-based content and counter misinformation 32 36 43 50 . Digital technologies would facilitate access to information and promote self-management by women with endometriosis 32 but this may be associated with high costs 19 20 21 46 . To counteract the high costs of digital technologies, promoting inexpensive solutions and improving financing by providing public funding is recommended. The integration of such technologies into existing health care programs could contribute to reducing costs and improving access 51 .

This study shows that endometriosis care is challenged by many different social and structural aspects. The aim of the scoping review was to systematically examine the international evidence on barriers and facilitators of care and get ideas on how to optimize the care situation in Germany. Structural, psychosocial, and communicative obstacles were found to be the main barriers. Facilitating and challenging aspects were systematically categorized. This review provides a structured overview of existing challenges and attempts to transfer them to patient-centered endometriosis care in Germany. A key barrier was found to be the considerable delays in obtaining a diagnosis, which could be essentially ascribed to insufficient knowledge of endometriosis among non-specialized medical professionals. Symptoms are often played down or wrongly classified as psychosomatic, which makes appropriate early treatment more difficult 19 23 24 25 27 28 29 30 35 36 38 39 40 43 45 46 52 . Davenport et al. 54 showed that many general practitioners classify endometriosis symptoms as “normal” menstrual pain, which leads to misdiagnosis and inadequate access to specialized treatment. Their findings correspond to statements in the German S2k guideline on endometriosis which also points to significant deficits in early detection 12 . As regards the recommendation in the guideline to boost the awareness of general practitioners, it was found that international studies placed greater emphasis on additional barriers – for example, communication between doctor and patient – than was proposed in the guideline. This has yielded new impulses to amend and further develop existing health care recommendations in Germany. The lack of specific knowledge about endometriosis in the primary health care sector reflects the need for a greater inclusion of endometriosis in the medical curriculum and an obligation for general practitioners to undergo further training to raise their understanding and awareness 54 . Systematic screening tools and government-funded measures to raise awareness are lacking 55 56 57 58 . Such measures would not just shorten the time to diagnosis but also foster the interdisciplinary skills of medical staff and lead to more sensitive communications with affected women 59 . The cooperation between different medical specialties is especially relevant if the aim is to integrate non-drug treatment options into the general care of patients with endometriosis. Physiotherapy, nutrition counseling, and psychological support are proven effective additions to drug treatment and surgery but are often not funded by health insurance companies 60 . The inclusion of these therapies into general health care, supported by adaptations to health policy frameworks, could increase the success of treatments 61 62 63 . Such approaches are already being implemented in specialized endometriosis centers but need to be available across the whole country to counter long wait times and the regional differences in available care 55 . This would not just represent the implementation of guideline recommendations for multimodal therapy but also ensure that health care services are distributed fairly 12 . Many women with endometriosis report a lack of recognition of their pain which can lead to feeling isolated and helpless. In addition to structural adjustments, low-threshold access to support is essential. This can consist of setting up self-help groups, providing digital communication platforms, and including psychological care in general health care. Such initiatives offer women with endometriosis the opportunity to share their experiences, support one another, and improve their quality of life 64 65 66 . Target group-specific information and education campaigns such as the “EndoMarch” campaign illustrate how such an approach can help raise awareness and understanding in the general population and strengthen the health literacy of women with endometriosis 67 68 69 . Digital platforms and social media can be used to make such information available to the wider public and thereby encourage earlier diagnosis and treatment 70 . The findings of this study demonstrate the need for structural changes in the health care provided to patients with endometriosis. The implementation of interdisciplinary treatment approaches is described as an important strategy to improve care 71 72 . A coordinated cooperation between different medical specialties is already a mandatory part of treatment in certified endometriosis centers. Although comprehensive coverage linking different specialties in the German health care system across the country would be essential, implementing such networks is problematic. An important reason for this is the continuing fragmentation of care which makes it difficult to initiate cooperations between different medical specialties outside of certified centers 73 . Successful models such as the British “Endometriosis Centres of Excellence” program have already demonstrated early on that coordinated care provided by gynecologists, pain therapists, and psychologists has a positive effect on the quality of life of patients 74 . Different studies have also shown that digital health care solutions can be a valuable addition to the health care system. Telemedicine platforms, apps to record symptoms, and online support groups offer women with endometriosis the option to access low-threshold and flexible support 75 . One example of this is the digital health care app Endo-App which makes it easier for women with endometriosis to record their symptoms and offers access to evidence-based information 60 . Digital solutions can contribute to improving care across all of Germany, especially when they are combined with local support groups and information events. Such hybrid models appear to be especially helpful for young women as they provide early education and information about endometriosis. This approach also encourages self-management skills as the applications enable women with endometriosis to make informed decisions about treatment 76 77 78 . When considering the endometriosis care situation in Germany, it is clear that a comprehensive expansion of endometriosis care will be necessary to systematically reduce existing barriers. International experiences indicate the benefits of expanding interdisciplinary care structures, setting up specialized endometriosis centers across Germany, and integrating digital options and psychosocial support into general health care. Even though international concepts cannot be directly transposed to Germany due to the differences in care systems, they still provide valuable pointers which can be used to derive practical measures which will be relevant for the German context. This includes mandatory further training for doctors, sustained support for interdisciplinary centers, a wide range of supportive psychosocial services, and the targeted use of digital tools. All these elements provide valuable starting points for patient-centered, future-focused endometriosis care in Germany.

The findings of this scoping review identified four key care deficits: delayed diagnoses, insufficient psychological support, deficits in pain management, and limited access to specialized treatment options. In contrast, approaches such as increased education and further training of medical professionals, the creation of interdisciplinary care structures, patient-centered care, and innovative digital interventions have been found to be beneficial. This has the following implications for medical care in Germany: improving medical training, strengthening interdisciplinary cooperation, and integrating psychosocial and digital services into general health care are essential to sustainably improve the care of women with endometriosis.

This scoping review has certain limitations which must be considered when interpreting the findings. Despite a comprehensive search of the literature in various databases, it is possible that relevant studies were not included. Moreover, most of the included studies were conducted abroad. While this corresponded to the study objective which was to gather insights from international experiences which would be useful for the care situation in Germany, cultural and structural differences limit the transferability to the German context. The limited number of German studies underscores the need for further studies to obtain a better understanding of the care situation of women with endometriosis, identify barriers in the German health care system, and develop specific measures to improve the situation. It should also be remembered that the included studies do not reflect the entire range of experiences of affected women, which reduces the representativity and generalizability of the results.

Endometriosis is a complex chronic disease which affects an estimated 10–15% of all women of reproductive age worldwide 1 . Around 2 million women in Germany are affected by endometriosis 1 , with around 53000 cases newly diagnosed in 2022 2 . Endometriosis is characterized by the presence of endometrium-like tissue outside the uterus. It can produce local and systemic inflammatory processes. These may subsequently lead to adhesions and fibrosis in the pelvic region 3 . The most commonly reported symptoms are dysmenorrhea, menstrual cycle-independent lower abdominal pain, dysuria and dyschezia, hypermenorrhea, menorrhagia and metrorrhagia, and decreased fertility 4 . Endometriosis-related symptoms can significantly reduce the quality of life of affected women and have a strong negative psychological impact. Studies have shown that mild to severe depression, eating disorders and anxiety affect a significant percentage of women with endometriosis 5 . There is also an increased probability of ovarian cancer 3 . Despite the frequency and the significant impact of this disease, diagnosis and care are still very challenging. Studies from Austria and the Netherlands show that the average time to diagnosis ranges from six to ten years 6 7 . This delay can be attributed to various factors, including insufficient knowledge about the disease among both affected women and medical professionals as well as social taboos which make communications about symptoms more difficult 8 . Cyclical and acyclic lower abdominal pain is considered “normal” by many women, which contributes to an erroneous assessment of the signs of disease and thereby delays diagnosis 9 . Insufficient consideration of the possibility of endometriosis by treating physicians when searching for a diagnosis is a further cause of delay 9 . These deficits lead to affected women feeling that they are not taken seriously and receiving inadequate treatment from different medical specialists 10 . Although some countries have already implemented targeted approaches to treatment, a comprehensive evidence-based strategy to optimize endometriosis care is still lacking in Germany 11 . Diagnosis is still significantly delayed in many cases, which is also due to deficits in medical education and training 11 . The S2k guideline on the diagnosis and therapy of endometriosis in Germany, Austria and Switzerland provides structured recommendations for action but, at present, it has not yet been implemented nationwide 12 . Interdisciplinary treatment structures have also not yet been established nationwide, although initial improvements are visible 11 . The first steps towards a structured care approach would be the certification of endometriosis practices and clinics and clinical scientific centers for endometriosis in accordance with the recommendations of the Endometriosis Research Foundation ( Stiftung Endometrioseforschung ) which explicitly reference the need for interdisciplinary cooperation 12 . Nevertheless, considerable deficits remain, for example with regard to pain management, due to a lack of specialized outpatient clinics across Germany and the lack of standardized treatment concepts 11 . Currently, there are increased health policy attempts to improve care, which also includes active research collaborations 13 . But overall, the evidence for effective care models is inadequate. The updated S2k guideline on the diagnosis and treatment of endometriosis is expected to provide further impetus for standardized care in the future. Despite the high incidence and sometimes serious consequences for the quality of life and fertility of affected women, systematic investigations into specific obstacles in the care system in Germany are lacking. Individual studies have highlighted issues such as structural deficits, social taboos, and poor communication between doctors and patients 6 7 8 9 , but a comprehensive overview of these barriers and of possible facilitating factors is currently lacking. Knowledge of such factors is essential to improve clinical practice as delayed diagnosis and inadequate care does not just increase the burden of disease on patients but can also limit the effectiveness of therapeutic interventions 6 7 8 9 10 11 . All the above points to a key gap in research: the lack of a systematic overview which could identify the factors which hinder and those that support the care of patients with endometriosis and use them to develop practical recommendations for action. The aim of this scoping review was therefore to evaluate international studies on barriers and facilitators in endometriosis care. The findings are intended to serve as a basis for developing concrete strategies to enable earlier diagnosis and improve doctor-patient communication within the German health care system.