Evaluation of the need for the integration of a nurse specialist (EndoNurse) into the interdisciplinary care of patients with endometriosis: Cross-sectional study

Stefan Lukac: Writing – review & editing, Writing – original draft, Supervision, Resources, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Viktoria Maria Kässens: Writing – review & editing, Writing – original draft, Project administration, Investigation, Formal analysis, Data curation. Anne Barzel: Writing – review & editing, Supervision, Methodology, Conceptualization. Tabea Kloss: Writing – review & editing, Methodology, Investigation. Ina Mayer: Writing – review & editing, Project administration, Investigation. Wolfgang Janni: Writing – review & editing, Supervision, Resources. Katharina Hancke: Writing – review & editing, Writing – original draft, Supervision, Methodology, Conceptualization. Davut Dayan: Writing – review & editing, Supervision, Resources, Project administration, Methodology, Investigation, Conceptualization.

This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors. The data that support the findings of this study are not openly available due to reasons of sensitivity and are available from the corresponding author upon reasonable request. Data are located in controlled access data storage at University Hospital Ulm.

844 of 1036 participants were included in the final analysis, in line with the inclusion criteria. The median age was 31 years, and the median duration of disease was two years. The diagnosis was predominantly established during surgery. The majority of participants were in a relationship, had no children and reported being of normal weight, with an average body mass index of 23.3 kg/m2. The characteristics of the patient cohort are shown in Table 1 . Table 1 Characteristics of the patient´s with endometriosis in the survey:. Table 1: 844 (100 %) Age (years) Median (Range) 31 (18–58) Body Mass Index (kg/m 2 ) Median (Range) 23.3 (15.4–48.3) missing 40 (4.7 %) Nationality German 790 (93.6 %) Other 54 (6.4 %) Highest level of education University degree 331 (39.2 %) apprenticeship 223 (26,4 %) A-levels 135 (16.0 %) Secondary school diploma 135 (16 %) Other 20 (2.4 %) Relationship status single 149 (17.7 %) in partnership 382 (45.3 %) married 271 (32.1 %) divorced 3 (0.3 %) missing 39 (4.6 %) Children yes 131 (15.5 %) No 674 (79.9 %) missing 39 (4.6 %) Number of children Median (Range) 1 (1–4) Time since diagnosis (years) Median (Range) 2 (0–28) Diagnosis established by Surgery 788 (93.3 %) Ultrasound 47 (5.6 %) Magnetic resonance tomography 9 (1.1 %) Art of the previous surgery therapeutic 617 (73.1 %) diagnostic 476 (56.4 %) no surgery 65 (7.7 %) Number of surgeries per patient Median (Range) 1 (1–11) Symptoms of endometriosis experienced dysmenorrhea 651 (77.1 %) dyspareunia 538 (63.7 %) dyschezia 424 (50.2 %) dysuria 262 (31 %) constipation 417 (49.4 %) flatulence 632 (74.9 %) back pain 632 (74.9) shoulder pain 220 (26.1) other 319 (37.8 %) none 16 (1.9 %) Elements in the current therapy Surgery 670 (73.1 %) Gestagen only pills 256 (30.3 %) Combined estrogen-gestagen pill 136 (16.1 %) hormonal intrauterine device 71 (8.4 %) hormone implant 10 (1.2 %) analgesics 554 (65,6 %) phytopharmaceuticals 122 (14,5 %) physiotherapy 166 (19,7 %) mediation, relaxation exercises 333 (39,5 %) physical measures (e.g. heat) 439 (52 %) dietary changes 353 (41,8 %) other 150 (17,8 %) Characteristics of the patient´s with endometriosis in the survey:. Regarding satisfaction with current endometriosis care, only 138 (16.4 %) participants were satisfied, 414 (49 %) participants rated the received care as poor or very poor and 292 (36.4 %) participants as acceptable. Less than one in five patients felt well or very well informed concerning the topics symptoms (200; 23.7 %), therapy (209; 24.8 %), sexuality and family planning (124; 14.7 %) as well as sport and nutrition (111; 13.1 %) ( Fig. 1 ). Fig. 1 Satisfaction of patients with endometriosis with the evaluated topics in their current care. Fig. 1: Satisfaction of patients with endometriosis with the evaluated topics in their current care. About half of all patients (421; 49.9 %) reported following their doctor's treatment recommendations, 140 (16.6 %) only partially and 51 (6 %) tending to ignore them. 232 (27.5 %) women stated they were not taking any prescribed treatment. The 51 women mentioned gave the following reasons for non-compliance: 49 (96 %) named side effects, 25 (49 %) insufficient information from medical staff about the prescribed therapy and 7 (3.7 %) women mentioned high therapy costs. Concerning getting information about endometriosis, participants used predominantly the internet (750; 88.9 %), followed by physicians (449; 53.2 %), apps (340; 40.3 %), self-help groups (318; 37.7 %), friends and acquaintances (232; 27.5 %) and other sources (141; 16.7 %). So far, nursing professionals have played a disproportionally small role in patient education (80; 9.5 %). If they had a choice, 474 (56.2 %) of the women asked would choose physicians as their preferred primary information source, whereas 159 (18.8 %) would favor a nurse specialist trained in endometriosis (EndoNurse), 88 (10.4 %) the internet, 41 (4.9 %) self-help groups, 37 (4.4 %) apps and 44 (5.3 %) patients would choose others. Asked to rank the different information sources, physicians were in first place, EndoNurses in second and friends and relatives in third ( Fig. 2 ). Fig. 2 Desired sources of information for endometriosis treatment sorted by priority by patients with endometriosis. Fig. 2: Desired sources of information for endometriosis treatment sorted by priority by patients with endometriosis. Overall, participants' main concern was about pain and pain management (648; 81 %) alongside treatment options (669; 79.3 %). Other areas were also represented and are summarized in the Fig. 3 . In responding to additional questions on how to improve their care, patients mentioned more time, regular check-ups and a stable contact person as the three most important aspects ( Fig. 4 ). Fig. 3 Desired areas for improvement in the endometriosis care. Fig. 3: Fig. 4 Desire elements in the care of patients with endometriosis. Fig. 4: Desired areas for improvement in the endometriosis care. Desire elements in the care of patients with endometriosis. Finally, with regard to the EndoNurse, 774 (91.7 %) respondents could imagine being accompanied by an EndoNurse during their treatment and care in the future, 25 (3 %) did not know, 5 (0.6 %) would not be in favour of an EndoNurse and 40 (4.7 %) did not specify ( Fig. 5 ). The preferred areas to be covered by an EndoNurse are shown in Fig. 6 , with the main interest being in supportive measures: pain management (594; 70.4 %), nutrition (570; 67.5 %), sports and physiotherapy (567; 67.2 %), coping with everyday life (558; 65.8 %) and therapy options (547; 64.8 %). Fig. 5 Acceptance of patients with endometriosis to be accompanied by an EndoNurse in their treatment. Fig. 5: Fig. 6 Areas of care in which patients with endometriosis would like to be supported by EndoNurse. Fig. 6: Acceptance of patients with endometriosis to be accompanied by an EndoNurse in their treatment. Areas of care in which patients with endometriosis would like to be supported by EndoNurse.

This cross-sectional study was conducted between January 9th to March 10th, 2024. The study population comprises German-speaking, adult patients with clinically (magnetic resonance imaging, sonography) or histologically diagnosed endometriosis. Women younger than 18 years and those without diagnosed endometriosis or only isolated suspicion of endometriosis were excluded. The survey was conducted using the online platform LamaPoll, and all participants gave digital consent in line with the EU's General Data Protection Regulation (GDPR). Patients with endometriosis were contacted in various digital ways. Firstly, the Endometriosis Association of Germany, the official organization for patients with endometriosis, published the information and the link to our study on their official website for two weeks. In addition, 32 registered self-help groups for patients with endometriosis from all over Germany, listed on the website of the Endometriosis Association Germany e.V. with their contact data ( Endometriose-Vereinigung Deutschland e.V., n.d. ), were informed by email to the chair of their respective groups. They were asked to share the survey with the members of their group. Three chairs/self-help groups confirmed distribution of the study information. However, members of other self-help groups might have received the information about the study as well without any feedback being provided. Further, we used social media to spread the study information. The EndoApp Team, provider of an officially approved digital health application (DiGA) for patients with confirmed endometriosis, and six “endometriosis influencers” were contacted on Instagram to recruit participants. Of those “endometriosis influencers” contacted on Instagram, only Ms. Vivian Vanessa Wagner, known on Instagram as “endoloewin”, with around 17 900 followers (January 2024), responded to the request and shared the study call once via her Instagram story. The EndoApp Team posted the information and the link to our survey twice via an Instagram story on their account, called “endo_app”, which has around 19 100 followers (January 2024). The information was online for 24 h in both cases. In addition, participation in eight online self-help groups on Facebook focusing on endometriosis was requested but only granted in four of these groups (“Endometriose ganzheitlich verstehen| umsetzen| leben”; “Endometriose – Gruppe für betroffene Frauen”; “Endometriose, Regelschmerzen, Frauenprobleme & Myome”; “Endometriose/ Adenomyose und ihre Begleiterkrankungen”). These groups have between 106 and 2618 members, whereby multiple membership in more than one group is possible. In each case, a one-off post was sent to the group with an invitation to the study and the link to the online survey. As there is no questionnaire on the need for education and evaluation of nursing in endometriosis yet, we adhered to Moradi's Endometriosis Impact Questionnaire (EIQ) ( Moradi et al., 2019 ) that measures a long term impact of endometriosis in the following areas: Impact of endometriosis on physical and psychosocial parameters, sexuality, intimate relationships, fertility, employment, financial and educational parameters and lifestyle. Based on the EIQ, we created an own questionnaire with the following parameters: general anthropometric data (age, height and weight to calculate the body mass index), social data (relationship status, highest level of education, nationality, religion and time since diagnosis) and partly modified dimensions of the EIQ (physical and psychological symptoms, therapy, lifestyle, sexuality, partnership, fertility, counselling wishes) (Appendix 1). In addition, questions were included on patient satisfaction with the current care and treatment as well as the level of education. The responses were scaled on the 5-point-Likert scale. Finally, questions were added on current and desired sources of information regarding endometriosis, areas for improvement in education and nursing care, acceptance of support by an EndoNurse in the future (yes/I do not know/no) as well as areas where the EndoNurse could be integrated. The data collected was statistically analyzed after the survey ended. The cohort was characterized by descriptive statistics of the variables (frequency, median, range). The areas requiring clarification were described using the Likert scale and categorized according to priority. The study was approved by the Ethical Committee of the University Ulm Nr. 364/23 and registered in the German Register of Clinical Studies under Nr. DRKS00033078.

The size of our study population, and the fact that the analysis included only women with a confirmed diagnosis of endometriosis, are among the strengths of this study. Additionally, the multi-layered questionnaire included a wide range of topics regarding satisfaction with current care, the need for information, the acceptance of an EndoNurse and her areas of responsibility. Moreover, this study is one of very few addressing the important topic of patient care, satisfaction, gaps in care and wishes and needs of patients with endometriosis. One limitation of our study is the unknown exact response rate as our sampling method limits the ability to calculate this rate. Furthermore, whether the EndoNurse will achieve the intended effect cannot be answered by our study, so further prospective studies are necessary for this.

Endometriosis is a benign but chronic disease that affects around 10 % of all women of reproductive age, but the grey numbers are higher ( Bonavina and Taylor, 2022 ; Norton et al., 2020 ). The disease often leads not only to pain symptoms but also has a significant impact on social function and is reducing the patient’s quality of life ( Della Corte et al., 2020 ; Sims et al., 2021 ; Ulrich et al., 2020 ; Van Barneveld et al., 2022 ). Furthermore, endometriosis places a burden on the healthcare system, comparable to other chronic diseases, such as Crohn's disease, diabetes or rheumatoid arthritis ( Della Corte et al., 2020 ; Eisenberg et al., 2018 ; Nnoaham et al., 2011 ; Simoens et al., 2012 ). The chronic nature of this disease requires long-term, specialized, individually adapted and multidisciplinary care ( National Institute for Health and Care Excellence, 2017 ; Ulrich et al., 2020 ). Many parts of this long-term care require specialist nursing skills. The value of integrating nurse specialists into the care of patients with some other chronic diseases, such as breast cancer, chronic inflammatory bowel disease and diabetes, has already been proven and contributes significantly to higher patient satisfaction and an improved quality of life ( Albert et al., 2011 ; Coulter et al., 2016 ; Mahony et al., 2019 ; Refeld, 2023 ; Smith et al., 2022 ; Stahlke et al., 2017 ). The tasks of a nurse specialist, for example Breast-care-Nurse, generally include the comprehensive care and support of patients from the initial assessment to information and advice on the disease itself and topics such as therapeutic options, pain management and supportive care ( Hussain Rawther et al., 2020 ; Rosso et al., 2021 ; Stahlke et al., 2017 ; Tshiananga et al., 2012 ; White and Wilkes, 1999 ). They coordinate and optimize treatment procedures and carry out post-operative follow-up examinations. German nurse specialists are guided by international standards and do comparable work ( Voigt et al., 2011 ). They act as a supportive link between patients and the specialist medical team and thus not only help to improve treatment outcomes but also reduce the burden on the clinic in terms of staff resources, time and length of stay ( Coenen et al., 2017 ; Martinez-Vinson et al., 2020 ; Norton et al., 2020 ; Stahlke et al., 2017 ; Yu et al., 2023 ). Through targeted education and coordination by nurse specialists (Breast-Care-Nurse), the care and treatment compliance of breast cancer patients was also optimized in the long term ( Albert et al., 2011 ; Hussain Rawther et al., 2020 ). Moreover, patients perceive their care as holistic and satisfactory with physical, psychological, emotional, social aspects ( Smith et al., 2022 ; Stahlke et al., 2017 ). The topic of holistic care and patient satisfaction along with its impact on improved quality of life in patients with endometriosis has not yet been sufficiently examined from a scientific perspective. Studies on the current gaps in care and the wishes of those affected are missing. Nursing care for patients with endometriosis is currently not defined or established in Germany in contrast to English-speaking countries, in which advanced nurse practitioners are involved in endometriosis care. Nevertheless, there are no clear definitions about the tasks of an EndoNurse in general or what patients expect from an EndoNurse at all. Therefore, our study focused on evaluating the needs of women with endometriosis as well as the acceptance of nursing care and areas where the skills of an EndoNurse could be most usefully applied.

According to our knowledge, our study is world-wide the first one to evaluate the need for and preferred focus areas of a nurse specialist in endometriosis care, the EndoNurse, in a sizeable cohort of >800 women with endometriosis. Our results show that there is an extensive need to improve care of patients with endometriosis, as satisfaction with the current management is low. Studies on women's perceptions of endometriosis care are scarce, as the majority of the studies focus solely on pain relief as an endpoint ( Evans et al., 2022 ; Moradi et al., 2014 ). However, similar to our results, most women resported being generally dissatisfied with their care of endometriosis ( Evans et al., 2022 ; Lukas et al., 2018 ). Regarding the quality of care, respondents identified sufficient time for explanations, regular follow-ups, and a consistent point of contact as essential. Previous studies confirmed that it is not really the intensity of pain, but the duration of illness that was associated with dissatisfaction ( Evans et al., 2022 ; Lukas et al., 2018 ). Besides endometriosis itself, there are further factors linked to decreased satisfaction, for example obstacles in accessing medical care, long waiting times, high treatment costs, stigmatization and inconsistent care ( Culley et al., 2013 ; Evans et al., 2022 ). These results are consistent with the responses of our participants, highlighting the need for improvement. Especially in the area of extragenital endometriosis, ignorance of symptoms and a lack of understanding by physicians can negatively affect satisfaction of patients in terms of care provided ( As-Sanie et al., 2019 ; Evans et al., 2022 ; Moradi et al., 2014 ; Lukac et al., 2024 ). In summary, continuous care in specialized units by professionally trained staff, combined with educating patients, is required to improve patient satisfaction. In addition to the necessary medical expertise, empathy and trust are also crucial for successful treatment ( Wattier, 2018 ) especially when addressing issues such as sexuality and psychological stress ( Rossi et al., 2021 ; Ulrich, 2013 ). Our participants reported need for improvement in education concerning the topics sexuality, nutrition, sport, psychical well-being alongside understanding of symptoms and treatment. With reference to nursing care, building a relationship in a welcoming environment in which women can freely ask questions and express their own needs, concerns and expectations will lead to improved satisfaction and quality of life ( Lukas et al., 2018 ). Even in the digital age, women preferred a combination of physician and specially trained nursing staff as the primary source of information. Our results underline that, overall, patients are more inclined to seek special medical advice in this way and trust it more than an impersonal source of information such as the internet. Lukas et al. (2018) found that women who were satisfied with their treatment were more likely to describe communication with doctors as useful, while dissatisfied patients were more likely to use the internet as a source of information. This trend is also reflected in the results of this study. Better education can also lead to a more informed understanding of the disease and an improvement in quality of life ( Ting et al., 2020 ). With regard to cancer, it is generally known that uncertainty about the disease is a significant cause of psychological stress, which has a negative impact on quality of life and promotes the use of avoidant coping strategies ( Ting et al., 2020 ). This emphasizes the importance of patient education. Many women, including the participants in this study, call for a holistic, caring and interdisciplinary approach to the treatment of endometriosis ( Evans et al., 2022 ; Facchin et al., 2018 ). A multidisciplinary approach that includes physicians, responsible for medical and surgical treatment, nurse specialists and allied healthcare providers, such as psychologists and physiotherapists, is necessary to address the complex biopsychosocial needs of women affected by endometriosis ( Agarwal et al., 2019 ; As-Sanie et al., 2019 ; Evans et al., 2022 ; Friedl et al., 2015 ; Lukac et al., 2023 ; Wattier, 2018 ). In addition, an interdisciplinary treatment concept provides many benefits such as pain relief, a reduction in visits to the emergency room, a reduction in the prevalence of concomitant diseases as well as an improvement in functional quality of life. This has already been proven for other chronic conditions ( Allaire et al., 2018 ; As-Sanie et al., 2019 ). As part of a multidisciplinary team, the EndoNurse could play an important role and support patient-oriented education and thus contributing to greater patient satisfaction and compliance as well as better treatment outcomes, as it has already been demonstrated in other diseases ( Gadot and Azuri, 2023 ; Gagan and Maybee, 2011 ; Mahony et al., 2019 ; Moore and McQuestion, 2012 ; Rosso et al., 2021 ; Tawfik et al., 2023 ). The acceptance of an EndoNurse as part of an interdisciplinary treatment concept is very high among the participants in this survey. The fact that almost half of the patients in our study group would consult the endo-nurse in addition to the medical staff for primary information procurement and almost all of the women asked would accept additional consultations from an endo-nurse if these were offered, is remarkable, especially in view of the fact that the women have had no previous experience with an endo-nurse, as this concept is still in its infancy in Germany. However, due to traditional role perceptions of healthcare professionals, it is essential to provide information about the individual role of an EndoNurse. The care provided by an EndoNurse is intended to be complementary, high-quality, specialist nursing care and the competences and independent skills of an EndoNurse should be recognized ( Norton et al., 2020 ; Lukac et al., 2023 ). Therefore, in addition to the effective communication about the EndoNurse’s work as part of an interdisciplinary team, effective strategies should be developed for introducing the EndoNurse to patients, with the aim of promoting acceptance. Nevertheless, we expect comparable benefits and added values of the EndoNurse to those mentioned above of already existing nurse specialists such as Breast-Care-Nurses ( Albert et al., 2011 ; Mahony et al., 2019 ; Stahlke et al., 2017 ). Finally, the current healthcare system is challenging in terms of accessibility, staff shortages and financial pressure ( Stahlke et al., 2017 ). However, as the study of Mahony et al. (2019) shows, the involvement of a nurse specialist can provide economic benefit by saving costs through reduced utilization of healthcare services, especially if patients get in touch with them at an early stage. This will be a beneficial add-on of implementing the EndoNurse.

Overall, there is a multifaceted lack of information in various care-related areas among patients with endometriosis. The integration of a nursing expert, EndoNurse, is a concept that is highly conceivable and desired by women with endometriosis. Together with the previously published literature, our results show that the implementation of an EndoNurse is sensible and desirable to address the diverse needs and wishes of women with endometriosis. We are convinced that the introduction of an EndoNurse will make a valuable contribution to the treatment and care of patients with endometriosis in a multidisciplinary team.

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.