Evaluation of endometriosis patients' expectations of a therapeutic patient education program and comparison with practitioners' perception

EV, MR, and PAG conceived and designed the study. EV, MR, and PAG collected data. EV and PAG analyzed the data. EV and MR drafted the manuscript. JD and PAG critically reviewed the manuscript. All authors approved the final manuscript.

This research did not receive any specific grant from funding agencies in the public, commercial, or not‐for‐profit sectors.

The survey was sent to 450 patients, of whom 153 fully responded (34.0%). Of the 102 healthcare professionals who attended the congress, 51 filled out the survey (50.0%). Patients' characteristics are displayed in Table  1 . The mean age of participants was 34.4 years (±8.9 years). The mean delay in diagnosis was 9.2 years (±7.9 years), with a mean duration of symptoms of 13.8 years (±8.9 years). In terms of management, 115 patients (75.2%) received hormonal treatment and 75 (49.0%) had a surgical management. Of those “very satisfied” or “satisfied” with their management, 63 (72.5%) were receiving hormonal treatment, and 40 (53.3%) had undergone surgery. Patients' characteristics. Note : Results for continuous variables are expressed as medians and first and third quartiles. Results for categorical variables are expressed as numbers ( n ) and percentages (%). Abbreviations: IUD, intra‐uterine device; OC, oral contraceptive; TPE, therapeutic program education. Table  2 summarizes patients' expectations of a TPE program, including information about previous participation in TPE sessions, the desired topics, and the program's expectations. For 101 patients (87.8%), the ideal time to start TPE sessions was as soon as the diagnosis was announced. Concerning the advice to include in TPE sessions patients with high suspicion of endometriosis based on clinical history but without proof of diagnosis (imaging or surgery for example), 131 patients (86.8%) were in favor. Patients' expectations on therapeutic program education program. Note : Results for categorical variables are expressed as numbers ( n ) and percentages (%). A total of 79 patients (51.6%) were very satisfied or satisfied with their treatment (Table  3 ). Patients who were “very satisfied” or “satisfied” were, on average, older than other patients (35.8 ± 8.8 years vs. 32.9 ± 8.6 years; P  = 0.041). No significant difference was found according to patients' management satisfaction regarding their general characteristics, the topics they wished to discuss, the goals they aimed to achieve with this type of program, or the professionals they wished to meet. Comparison of patients' expectations according to satisfaction with previous management. Note : Results for continuous variables are expressed as medians and first and third quartiles. Results for categorical variables are expressed as numbers ( n ) and percentages (%). Comparisons between satisfaction and unsatisfaction reported in the column “ P ‐value” after using the appropriate statistical test. P ‐values of <0.05 were considered statistically significant. Bold values are P ‐value statistically significant. Abbreviation: TPE, therapeutic program education. Satisfaction includes patients who reported being “very satisfied” or “satisfied” with their previous management; non‐satisfaction includes patients who reported being “moderately satisfied,” “unsatisfied,” and “very unsatisfied.” Topics, expectations, and speakers desired by patients according to their previous participation in TPE sessions are reported in Table  4 . Of the 153 patients surveyed, 123 (80.4%) had never attended a TPE session, 18 (11.8%) had attended sessions related to gynecology, and 12 (7.8%) had attended sessions on non‐gynecological topics. The main topics covered in gynecology sessions were disease diagnosis, symptoms, nutrition and environment, and psychosocial support. Among patients who had never attended a TPE session, 61 of 123 (49.6%) reported being satisfied or very satisfied about actual endometriosis management, compared to 18 out of 30 (60.0%) among those who had attended at least one session. This difference was, however, not statistically significant ( P  = 0.220). The ideal number of participants per TPE session was 11.6 (±4.9) according to patients who had previously attended sessions, compared with 9.3 (±3.3) for those who had never attended ( P  = 0.023). Comparison of patients' expectations based on their previous participation to any therapeutic program education. Note : Results for categorical variables are expressed as numbers ( n ) and percentages (%). Comparisons between patients who had undergone previous TPE sessions are reported in the column “ P ‐value” after using the appropriate statistical test. P ‐values of <0.05 were considered statistically significant. Bold values are P ‐value statistically significant. Healthcare professionals were surveyed, primarily consisting of 18 midwives (35.3%), 11 obstetrician‐gynecologists (21.6%), five radiologists (9.8%), five physiotherapists (9.8%), three school nurses (5.9%), three state nurses (5. 9%), two general practitioners (3.9%), one local authority staff (1.9%), one sexologist (1.9%), one obstetrics and gynecology resident (1.9%), and one psychologist (1.9%). They were asked to assess their level of expertise according to three predefined categories: primary healthcare professionals (32 practitioners, 62.7%), second‐line practitioners (eight practitioners, 15.7%), and expert professionals working in referral centers for complex endometriosis (11 practitioners, 21.7%). Among these professionals, 21 (41.2%) were hospital employees, 20 (39.2%) had a self‐employed activity, five (9.8%) had a mixed self‐employed and salaried activity, two (3.9%) for the civil service, 1 (1.9%) was salaried in the private sector, one (1.9%) worked for the national education system, and one (1.9%) was salaried in the extra‐hospital public sector. The responses of healthcare professionals and patients are shown in Figure  1 . Among the participants, 107 (69.9%) wished to be accompanied by their partner, while 48 healthcare professionals (94.1%) expressed that this was indeed their preference ( P  < 0.001). No statistical difference was found concerning the acceptability of participation of other patients' spouses: 124 (81.1%) of patients and 44 (86.3%) of healthcare professionals were in favor ( P  = 0.525). In contrast, 73 patients (47.7%) wished to be accompanied by someone other than their spouse, compared with 39 (76.5%) professionals who shared this opinion ( P  < 0.001). Comparison of expectations regarding the organization of therapeutic program education sessions between patients and healthcare professionals. Results for categorical variables are expressed as numbers ( n ) and percentages (%). Comparisons between patients and healthcare professionals are reported on the right side of the figure “ P ‐value” after using the appropriate statistical test. Only P ‐values of <0.05 were considered as statistically significant and are shown. Among the healthcare professionals surveyed, two (3.9%) were personally affected by endometriosis, while 18 (35.3%) had a friend or family member with the condition. There was no significant difference in responses between professionals with or without an affected entourage. No statistical test was conducted for personal diagnosis due to the small sample size, making the analysis irrelevant. A comparison of TPE themes and expectations between professionals and patients is shown in Figure  2 . A statistically significant difference was observed concerning the role of certain participants in TPE sessions. Professionals were more likely to respond to sexologists ( P  = 0.030), midwives ( P  < 0.001), and physiotherapists ( P  = 0.004) than patients. No significant difference was found in responses among healthcare professionals based on their referral level for session themes. Comparison of therapeutic program education themes and expectations between patients and healthcare professionals. Results for categorical variables are expressed as numbers ( n ) and percentages (%). Comparisons between patients and healthcare professionals are reported on the right side of the figure “ P ‐value” after using the appropriate statistical test. Only P ‐values of <0.05 were considered as statistically significant and are shown.

This survey provides insight into the expectations of endometriosis patients regarding therapeutic education. The study highlights that the main topics and expectations of patients for TPE sessions were clearly identified and did not differ based on past satisfaction with care or prior participation in a TPE program. TPE sessions should be initiated at the time of diagnosis. Overall, healthcare professionals shared similar expectations with patients regarding the content and structure of TPE sessions. Therapeutic patient education was largely desired as soon as the diagnosis was announced, with a clear demand for improvement in symptom management and quality of life. This observation was consistent with Facchin et al., who demonstrated that chronic endometriosis‐related pain significantly affects patients' quality of life and mental health, reinforcing the need for tailored educational management. 15 The main symptoms reported by patients with endometriosis are bowel disorders, chronic pelvic pain, and dysmenorrhea, affecting over 60% of patients. 16 The average time to diagnosis remains long, and current management relies mainly on hormone therapy and surgery, with a moderate satisfaction rate. 17 , 18 A TPE program could enhance endometriosis management as expected by patients. Our results revealed a convergence of expectations between patients and healthcare professionals. Priority themes such as pain management and improving quality of life were widely shared. The importance of integrating these themes was previously confirmed by Correia et al., who highlighted the positive impact of TPE programs on chronic diseases, particularly when they focus on symptoms. 10 Moreover, studies carried out in other chronic pathologies, such as asthma, have shown that TPE improves patients' quality of life and self‐management skills, reinforcing the relevance of its application to endometriosis. 14 The perceived role of some speakers differed between patients and healthcare providers: professionals were more inclined to include infertility, psychosocial support, and sex as topics in TPE sessions. These differing perspectives highlighted the importance of offering these themes in a flexible and optional manner, rather than as systematic content. These findings reinforced the need for a personalized, patient‐centered approach. Regarding the format of TPE sessions, most patients preferred sessions of 1 or 2 h 1 month apart. Thus, apart from patients living in remote areas, full‐day or half‐day sessions should be avoided to ensure better accessibility and engagement. The involvement of spouses was strongly expected among patients and professionals. The psychological and relational impact of endometriosis has already been demonstrated; Facchin et al. highlighted the deleterious effect of chronic pain on patients' mental health and social relationships. 15 The impact of endometriosis also affects couple dynamics, sex life, and the quality of social relationships. Developing specific modules for relatives would improve understanding of the disease and provide better emotional support for patients. Rosland et al. highlighted that family behaviors and communication patterns significantly affect chronic disease outcomes. Supportive and autonomy‐promoting family interactions were associated with better treatment adherence and improved disease management, while controlling or critical behaviors had the opposite effect. These findings emphasize the importance of integrating family members into TPE programs to foster a positive support system, ultimately enhancing patient well‐being and treatment outcomes. 19 This study has several limitations. The monocentric design could introduce a center effect, thereby potentially skewing the representativeness of the expectations, especially because patients who visit an expert center may have a different profile from patients who do not. In addition, the declarative nature of the responses might introduce a subjectivity bias. Finally, people who live further away from our center were probably underrepresented, introducing a selection bias, with specific organizational expectations. However, this bias was partially corrected by the fact that referral centers are recruited from a wider geographical area than local hospitals. Our study also has several strengths, including significant participation after only two reminders. In addition, the questionnaire was sent to all endometriosis patients, not just those included in the specific pathway for resistant pain justifying expert management. This was highlighted by a high proportion of patients who had never attended a TPE program (80.4%), thus providing a diversified perspective on needs. Several practical recommendations can be drawn from this study: TPE should be offered as soon as the disease is diagnosed, regardless of severity or resistance to treatment. Monthly sessions of 1–2 h seem preferable, unless there are specific geographical constraints. The most popular session themes (pain management and improving quality of life) should be proposed wherever possible, but the choice of sessions should always be left to the patients' wishes. Healthcare professionals involved in the management of endometriosis have the legitimacy to develop TEP programs. The results of this study highlighted endometriosis patients' interest in TPE, as well as their specific expectations regarding its content and organization. It would be pertinent to implement a rigorous evaluation, using a validated tool such as the Endometriosis Health Profile to measure changes in symptoms, pain management, and psychological well‐being. 20 Such an approach aligns with the need for structured evaluation in TPE, as emphasized by the World Health Organization, which defines TPE as an ongoing and patient‐centered process essential for chronic disease management and healthcare resource optimization. 9 Furthermore, the legitimacy of TPE programs is reinforced by their integration into the broader field of adult education, as highlighted by Boutinet, who underlined the importance of structured training for healthcare professionals and the adaptation of educational strategies to patients' specific needs. 21 Implementing validated assessment tools would thus support the recognition and wider integration of TPE into care pathways. Finally, a major challenge lies in raising awareness among healthcare professionals of the therapeutic education applied for endometriosis. One promising approach would be to integrate TPE modules into the initial and continuing training of healthcare professionals, particularly gynecologists, midwives, and general practitioners.

This study paves the way for the structured, evidence‐based development of TPE sessions for patients with endometriosis. TPE aims to empower patients, involving their active participation, by providing them with the tools they need to manage their chronic disease to improve the management of endometriosis and optimizing their quality of life. Systematic evaluation of these tools, the involvement of family and friends, and raising awareness among careers are all key factors in optimizing the management of endometriosis.

Endometriosis is a chronic pathology and a frequent public health problem, affecting approximately 10% of women of childbearing age, or nearly 190 million people worldwide. 1 , 2 It is characterized by the presence of tissue similar to the uterine mucosa outside the uterine cavity. 2 , 3 Diagnosis remains a major challenge, with an estimated delay of between 7 and 10 years , 4 which exacerbates patients' suffering and affects their quality of life, as well as their personal, sexual, professional and social lives. 5 , 6 Therapeutic patient education (TPE) plays a key role in the management of chronic diseases, helping patients acquire the skills to manage their condition. 7 In France, TPE is governed by the Hospital, Patients, Health and Territories (HPST) law of 2009, which defines it as a set of structured actions based on a global approach. 8 Regional Health Agencies finance and organize these programs, while other countries, such as Morocco, Senegal, and Congo include them in their national plans for diseases such as human immunodeficiency virus. 9 Therapeutic patient education has been applied successfully in a variety of chronic conditions. Although TPE has to be validated on a larger scale for endometriosis, reliable results exist for other chronic conditions. 10 , 11 A systematic review published in Headache in 2014 demonstrated the effectiveness of TPE in reducing migraine frequency, improving quality of life, and reducing associated disability. 12 Before assessing the impact of TPE programs, it is essential to ensure they align with patients' expectations. Indeed, patients' satisfaction and relevance of the program content are crucial for long‐term adherence and success. Cabré Font et al. evaluated a structured TPE program involving a diabetes specialist nurse for type 2 diabetic patients on insulin therapy in primary care. This study demonstrated significant improvements in glycemic control, self‐care skills, and perceived quality of life. 13 However, the lack of reliable publications on TPE applied to endometriosis limits conclusions on its impact in this population. Thus, the aim of this study was to understand patient expectations to adapt TPE programs to their specific needs. The secondary objective was to compare these results with patients' expectations as perceived by practitioners involved in the management of endometriosis to assess their concordance and their legitimacy to build this type of program.

The authors report no conflicts of interest.

This was a prospective survey‐based study. The patient survey was designed on the basis of consensus on endometriosis management practices and elements of TPE programs. 2 , 14 It included 29 questions divided into several main sections. First, data were collected anonymously regarding patients' characteristics, past experiences in endometriosis management, satisfaction of management, and previous exposure to TPE programs. Another section of the survey focused on patients' expectations of the program, addressing their preferred themes, organization, and speakers. A final section explored program accessibility, including ease of registration, location preferences, the possibility and willingness to participate with their partner, and the acceptability of the presence of other patients' partner during TPE sessions. The survey was designed in digital format using Google Forms. The questionnaire was developed de novo, based on interviews with qualified professionals responsible for setting up TPE program for patients. The questionnaire was reviewed by four practitioners involved in setting up the TPE of “Nice Endocentre” endometriosis referral center in Nice, in south‐east France. Each question and response option had to reach a consensus among all the healthcare professionals. The final version was tested by two partner patients who were not included in the analyzed responses. The questionnaire was anonymous, and no identifying data was collected. Consent was obtained after information about the purpose of the survey had been provided at the beginning of the questionnaire. It was distributed between December 2, 2024, and January 17, 2025, and was sent by e‐mail to all women who had consulted with the reason “endometriosis” in Gynecology Department of Nice University Hospital, France, a regional referral center for endometriosis. Two email reminders at 2‐week intervals were scheduled. This was the only inclusion criteria, and no exclusion was performed. In particular, there was no selection based on disease severity or exclusion of patients without histological diagnostic confirmation. The aim was to represent the population eligible for this type of program, without introducing selection bias for a population with more severe disease. The survey for healthcare professionals was designed to match the patient survey, and aimed to assess patients' wishes from the point of view of professionals. It was also anonymous, and accessible via a QR code that was distributed regularly throughout the day between the speakers' presentations during a regional professional day dedicated to the management of endometriosis (“Deuxième Journée ENDOSUD PACA”) on January 17, 2025. Consent was obtained after information about the purpose of the survey had been provided at the beginning of the questionnaire. The inclusion criteria for healthcare professionals was them dealing with endometriosis in their daily practice present during this event. Additional questions concerned the place of professionals in the care network (primary care and expert center) and whether the professional or their family had endometriosis. Data were analyzed by determining the proportion of responses for each question. Continuous variables were expressed as mean (± standard deviation [SD]) or median and first and third quartiles and discrete outcomes as absolute and relative (%) frequencies. Normality and hetereoskedasticity of continuous data were assessed with Shapiro–Wilk and Levene's test respectively. Continuous outcomes were compared with the unpaired Student t ‐test or Mann–Whitney U ‐test according to data distribution. Discrete outcomes were compared using the χ 2 ‐test or Fisher's exact test in cases of non‐compliance with χ 2 ‐test requirements. The alpha risk was set to 5% and two‐tailed tests were used. Statistical analyses were carried out to examine any differences between endometriosis patients and healthcare professionals regarding their perceptions of TPE programs and expectations. Only patients who responded were considered. No imputation method was planned. No sample size calculation was performed. Statistical analysis was performed with EasyMedStat (version 3.38; www.easymedstat.com ). In accordance with the Declaration of Helsinki, the study was approved by the Comité Ethique pour la recherche en Obstétrique et Gynécologie (CEROG) (Number 2025‐GYN‐0310). This is the ethics committee of the national college of obstetrics and gynecology in France. Participation in both questionnaires was voluntary and anonymous. No data identifying participants or professionals was collected.