Diagnosis Delay and Assessment of the Quality of Life of Patients with Endometriosis Using the Endometriosis Health Profile 5 Questionnaire in a Sub-Saharan Population

Context: Endometriosis is a pathology that directly affects the daily lives of women with frequent impairment of their quality of life. In our environment, medical, socio-cultural, financial factors and factors related to the organiz a- tion of the health care system greatly delay its diagnosis. The objectives of the present study were to determine the diagnosis delay and to assess the quality of life before surgery of women with endometriosis using the specific Endo- metriosis Health Profile 5 (EHP-5) questionnaire. Methods: We carried out a descriptive, observational, retrospective study in 8 medical centers in the City of Kinshasa, from January 2019 to October 2022. A total of 80 women with endometriosis confirmed by laparoscopy (16 diagnostic and 64 operative la- paroscopies) and histopathology were interviewed. We used the revised American Society for Reproductive Medicine (rASMR) classification, the En- How to cite this paper: Sibo, M., Esimo, M., Lobota, M., Monka, I., Kayembe, K.K., Grace, T., Kevine, S., Patrick, M., Kabuya, N., Naomie, A., Fastrez, M., Ikoko, B., Ally, N., Georges, S., Berthe, B., Pita, M., Mbe n- za, L., Ferrier, C . and Darai, E. (2023) Di- agnosis Delay and Assessment of the Qua l- ity of Life of Patients with Endometriosis Using the Endometriosis Health Profile 5 Questionnaire in a Sub-Saharan Popul a- tion. Open Journal of Obstetrics and G y- necology, 13, 907-917. https://doi.org/10.4236/ojog.2023.135078 Received: April 24, 2023 Accepted: May 28, 2023 Published: May 31, 2023 M. Sibo et al. DOI: 10.4236/ojog.2023.135078 908 Open Journal of Obstetrics and Gynecology dometriosis Fertility Index (EFI) score was calculated for infertile women and the EHP-5 questionnaire to assess quality of life. Our data was entered and analyzed using Statistical A nalysis Software 16.1 (STATA 16.1). Results: Di- agnosis delay of endometriosis was on average 12 ± 4.3 years. The overall mean EHP-5 score of all patients showed a severe det erioration in quality of life (604 ± 235). A neg ative relationship was observed between the age of the patient, the diagnostic delay, and the alteration of the quality of life in p a- tients over 36 years old and those with about 11 years of diagnostic delay presenting the slight alteration. Patients with a high social level had very s e- vere quality impairment. Women on hormonal treatment, those with a hist o- ry of pregnancy, childbirth, miscarriage and abortion had a slight and signi f- icant deterioration in quality of life (p < 0.05). Conclusion: Despite some li- mitations, our preliminary study highlights that in sub -Saharan Africa, the diagnosis of endometriosis is delayed and asso ciated with a severe alteration in quality of life. Moreover, diagnosis of endo metriosis seems to be restricted to wom en with high social level s. Therefore, further efforts are required to develop a health policy to decrease delay for d iagnosis with potential benefits on symptoms, quality of life, fertility while limiting stigma and psych ological effects of this debilitating pathology.

Diagnosis Delay, EHP-5, Endometriosis, Quality of Life, Sub-Saharan 1. Introduction Endometriosis is a chronic gynecological disease characterized by the presence of endometrial-like tissue outside the uterus [1]. Although diagnosis of endome- triosis is mainly suggested in women with dysmenorrhea, dyspareunia, chr onic pelvic pain and infertility, recent European Society of Human Reproduction and Embryology (ESHRE) recommendations emphasize the need to evoke the dia g- nosis for less specific symptoms beyond the genital sphere, in particular back pain, digestive disorders or even chronic asthenia, posing the concern on the feasibility of various investigations to assess the diagnosis , especially in develop- ing countries [2] [3] [4] [5]. Endometriosis is thought to affect 190 million women worldwide [1] with an in- cidence of 2% to 10% of women of childbearing age [1] [2]. This incidence reaches 12% to 45% in infertile women [6] [7]. However, it should be emphasized that these epidemiological data emanate from developed countries benefiting easily from ad- vanced imaging modalities (transvaginal ultrasound and MRI) [8]-[12]. Conversely, in sub-Saharan countries, diagnostic tools for endometriosis are more limited thus explaining the insufficient epidemiological data, especially on diagnostic delay, im- pact on quality of life and fertility management [4] [9]-[13]. A recent study suggests the contribution of specific questionnaire s to as sess the diagnosis of endometriosis, ESHRE guidelines underline their limited value Copyright © 2023 by author(s) and Scientific Research Publishing Inc. This work is licensed under the Creative Commons Attribution International License (CC BY 4.0). http://creativecommons.org/licenses/by/4.0/ Open Access M. Sibo et al. DOI: 10.4236/ojog.2023.135078 909 Open Journal of Obstetrics and Gynecology [4]. Moreover, due to limited availability of imaging techniques in developing countries, the diagn osis of endometriosis is still made during surgery for pain and/or infertility in women with advanced stages and severe alteration of quality of life (QOL). In this specific setting, previous studies have reported the contr i- bution of non-specific (SF-36) and specific endometriosis questionnaires (EHP-30 and EHP-5) to assess QoL [14]-[18]. Therefore, the objectives of the current preliminary study were to determine, in a sub -Saharan population, the time to diagnosis and the evaluation of the quality of life using the EHP -5 questionnaire in women with endometriosis proven by surgery and histology. 2. Material and Methods 2.1. Selection of Participant We carried out a descriptive, observational, and retrospective study in 8 medical centers in the City of Kinshasa (CPUA, OMC, CUK, Edith Medical, HJ Hospital, Clinique Diamant, Cl inique Médecin de Nuit and Clinique Dr . Lipombi); from January 2019 to October 2022 including 80 women with endometriosis co n- firmed by laparoscopy and histology were interviewed. All the women completed symptom questionnaires on gynecological (dysm e- norrhea, non-menstrual pelvic pain and dyspareunia), digestive (diarrhea and/or constipation, pain on bowel movement, intestinal cramping, pain on defecation, tenesmus and cyclic rectal bleeding) and non- specific symptoms (lower back pain and asthenia), epidemiological characteristics as well as prior medical trea t- ment and surgery. All the women completed the EHP -5 composed of 11 questions. First five questions address pain, control and helplessness, emotional well -being, social support, and self-image. The remaining six questions evaluate the impact on work, relationships with children, sexual relationships, and feelings about the medical profession, treatment, and infertility. Patients are asked to answer questions and rate their quality of life based on the past four weeks. Each question is rated on a scale of 5 (never = 1; rarely = 2; sometimes = 3; often = 4; always 5). The score was calculated by summing the responses to the eleven questions: never = 0 points; rarely = 25 points; sometimes = 50 points; often = 75 points; always = 100 points. The scores can therefore range from 0 to 1100. The quality of life is perfect (score = 0), slight deterioration (0 < score ≤ 275), moderate deterioration (275 < score ≤ 550), severe deterioration (550 < score ≤ 825) and very severe alteration (825 < score ≤ 1100). The validated short version of EHP-5 ques- tionnaire was used. The validated French version of the Endometriosis Health Pro- file-5 or EHP-5 corresponds to a short adaptation of the EHP-30. [17] All patients were operated on by laparoscopy, including 16 diagnostic lap a- roscopies and 64 operative laparoscopies. Briefly, the laparoscopy was performed in the modified dorsolithotomy position under endotracheal general anesthesia. Prophylactic antibiotic therapy was given at the beginning of the operation except M. Sibo et al. DOI: 10.4236/ojog.2023.135078 910 Open Journal of Obstetrics and Gynecology for diagnostic laparoscopy. After pneumoperitoneum induction, an umbilical 10 mm trocar was inserted for endoscope and two or three suprapubic 5 mm trocars. After exploration of the abdomino-pelvic cavity and adhesiolysis and resection of endometriotic lesions when required, the extent of the disease was evaluated using the rASMR classification to stage the disease and the EFI score to evaluate the chance of spontaneous pregnancy after surgery. Histological criteria for endome- triosis diagnosis included the presence of ectopic endometrial and stromal tissues. We considered at a high socio-economic level any patient who fully supported these treatment costs and at a low socio- economic level any patient who was unable to support herself and whose support was provided by social assistance 2.2. Ethics Approval The study was approved by the Ethics Committee of the School of Public Health of the University of Kinshasa according to the Declaration of Helsinki under number ESP/CE/187/2022. All patients signed informed consent. 2.3. Statistical Analysis Continuous variables were c ompared with Student ’s t -test and categorical va- riables were compared with the χ2 test or Fisher ’s exact test, as appropriate. P values < 0.05 were considered statistically significant. STATA software (version 16.1) was used for data analysis. 3. Results 3.1. Epidemiological and Socio-Economic Characteristics of the Population The mean patients’ age was 33 ± 6.9 years (ranges: 20 to 47 years), and the mean BMI was 21.2 ± 4.04 Kg/m2. More than three-quarters of the population had uni- versity levels, 78% had a university level, 85% of the patients had a high economic level. One-quarter of the population had sport activity with an average of 5.8 hours per week. Forty -one percent of our patients consumed an average of 196 cubic centimeters of alcohol per day (mostly ethanol) and smoking was observed in 16% of the population. History of depression, pregnancy, abdominal surgery and family history of first-degree dysmenorrhea accounted for 13%, 68%, 59% and 24% r e- spectively. In our series, 50% consulted for a desire to conceive. 3.2. Symptoms and Pre-Operative Examinations of the Population The average diagnostic delay was 11.8 ± 4.8 years. The main frequent symptoms suggestive of endometriosis were dysmenorrhea (81%), chronic pelvic pain (70%), deep dyspareunia (64%) and infertility (50%). Although half of the p a- tients had infertility, 68% of the population had a history of pregnancy. More o- ver, about half of the patients had a history of abortion. It is interesting to note that one-third of the patients had normal clinical examinations. Only two-thirds of the patients underwent a transvaginal sonography wh ile MRI was performed M. Sibo et al. DOI: 10.4236/ojog.2023.135078 911 Open Journal of Obstetrics and Gynecology in 71% of the patients allowing the diagnosis of endometriosis in 91% of them. The clinical and paraclinical characteristics are listed in Table 1 . 3.3. Surgical Characteristics, rASMR Stages and EFI Score of the Population All the patients underwent a laparoscopy including 80% operative and 20% d i- agnostic laparoscopy. The diagnosis of endometriosis was confirmed histologically Table 1 . Clinical and paraclinical characteristics. Variables Population (n = 80) Duration of complaint (year ± sd) 11.8 (±4.3) Age at first menstruation (year ± sd) 10.8 (±1.6) Clinical manifestations • Dysmenorrhea • Deep dyspareunia • Dyschesia • Dysuria • Pelvic pain • Metrorrhagia • Infertility 81% 64% 38% 23% 70% 49% 50% Presence of endometriosis On clinical examination • Normal • Adnexal mass • Deep pelvic endometriosis • Adnexal mass and Deep pelvic endometriosis On Transvaginal ultrasonography • Normal • Endometrioma • Deep pelvic endometriosis • Adnexal mass and Deep pelvic endometriosis 36% 34% 11% 19% 21% 38% 18% 23% Endometriosis on MRI • Not done • Normal • Superficial peritoneal endometriosis • Endometrioma • Deep pelvic endometriosis • Endometrioma and deep pelvic endometriosis 29% 4% 11% 28% 16% 12% Ongoing treatment • Hormonal contraception • Hormonal IUD 14% 10% M. Sibo et al. DOI: 10.4236/ojog.2023.135078 912 Open Journal of Obstetrics and Gynecology in all the patients. Most of the population had a stage III- IV rASRM stages. EFI score was ev a- luated for the 40 patients wishing to conceive. The majority of our patients had an EFI score between 4 and 6. These results can be found in Table 2 . 3.4. Quality of Life (QoL) of the Population Using EHP-5 Using the EHP-5 questionnaire, the mean QoL score was 604 ± 235. The distr i- bution of the patients according to QoL quartile is given in Table 3 . Relations be- tween epidemiologic, economic and symptoms and EHP-5 score are summarized Table 2 . Description of surgical parameters. Variables Population (n = 80) Type of surgery - Diagnostic laparoscopy - Therapeutic laparoscopy • Electro-coagulation of peritoneal lesion • Salpingectomy • Unilateral ovarian cystectomy • Bilateral ovarian cystectomy • Torus resection • Uterosacral ligament resection • Ureterolysis • Colpectomy • Bowel resection 20% 14% 9% 12% 26% 19% 21% 5% 16% 11% rASRM stage • I and II • III and IV 38% 62% EFI score (n = 40) • (0 - 3) • (4 - 6) • (7 - 8) • (9 - 10) 20.0% 47.5% 22.5% 10.0% Table 3 . Distribution of the QoL of the population according to EHP-5. EHP-5, mean score (±sd) 604 (±235) Quality of Life/EHP -5 Score - Perfect (score = 0) - Slight alteration (0 < score ≤ 275) - Moderate alteration (275 < score ≤ 550) - Severe impairment (550 < score ≤ 825) - Very severe alteration (825 < score ≤ 1100) 0 11% (n = 9) 34% (n = 27) 37% (n = 30) 18% (n = 14) M. Sibo et al. DOI: 10.4236/ojog.2023.135078 913 Open Journal of Obstetrics and Gynecology in Table 4 . A negative relationship was observed between the age of the patient, the diagnostic delay and the deterioration of the quality of life in patients over 36 years old and those with about 11 years of diagnostic delay presenting the slight alteration. Patients with a high social level had very severe QoL impairment. Women on hormonal treatment, those with a history of pregnancy, childbirth, miscarriage and abortion had a slight deterioration in quality of life. 4. Discussion The present retrospective study was to evaluate epidemiologic, socio -economic, and quality of life of patients with endometriosis in the context of a sub-Saharan country underlining the limits of the health care system. Although our population corresponds mainly to women with high economic and educational attainments, it is interesti ng to note that the delay in diagnosis is well over eleven years although most of the patients exhibited symptoms su g- gestive of endometriosis such as dysmenorrhea, chronic pelvic pain, deep dy s- pareunia and infertility. Indeed, our delay in diagnosis of 11 years contrasts with those reported in USA (4.4 years) and between 7 and 9 years in France [14]-[18]. Table 4 . Relation between epidemiologic, economic and symptoms and EHP-5 score. Variables Alteration quality of life p-value Mild Moderate Severe Very Severe Age 36 (6.8) 36 (5.6) 31 (7.0) 31 (6.3) <0.05* Complaint duration 10.6 (2.0) 13.3 (5.2) 12.1 (3.8) 9.1 (3.0) <0.05* Married status 78% 70% 50% 50% 0.24 University level 89% 78% 77% 71% 0.81 High social level 89% 70% 90% 100% 0.05* Sports practice 22% 26% 27% 21% 0.98 Dysmenorrhea 67% 85% 83% 79% 0.64 Dyspareunia 56% 52% 73% 71% 0.33 Dyschesia 22% 33% 43% 43% 0.64 Dysuria 22% 11% 30% 29% 0.35 Pelvic pain 67% 70% 67% 79% 0.87 Metrorrhagia 33% 52% 53% 43% 0.70 Infertility 56% 44% 50% 57% 0.87 Hormonal treatment 67% 56% 10% 7% <0.05* Pregnancy history 100% 93% 53% 29% <0.05* History of childbirth 100% 93% 53% 29% <0.05* History of miscarriage 22% 37% 7% 7% <0.05* Abortion history 56% 56% 47% 29% 0.40 M. Sibo et al. DOI: 10.4236/ojog.2023.135078 914 Open Journal of Obstetrics and Gynecology This apparent discrepancy can be explained by the fact that no abnormality at clinical examination was observed in one -third of the patients in our study. Moreover, even after transvaginal sonography, the diagnosis of endometriosis was considered in only two -thirds of the patient. All these data suggest that practitioners are insufficiently aware of the disease thus efforts must be made to improve not only medical awareness but also socio -cultural and financial factors in the health care system in our environment contributing to delayed diagnosis, Also, the availability of a new test based on the expression of miRNAs in the sa- liva of endometriosis patients could be a good option to overcome the diagnosis delay of endometriosis but raises the issue of its cost especially in developing countries. The normalization of pain by patients and by professionals during menstru a- tion and/or during sexual intercourse, the various taboos such as sexuality, men- struation and the female body, the discrediting of women’s words; the causes ex- plained by religion as the suffering and punishment of original sin; sexist prej u- dices explaining the fact that women are less well cared for and under -diagnosed compared to men. We believe that raising awareness on the enhancement of women’s rights and gender equality should be encouraged to awaken women in our community. This would contribute to reducing the diagnostic delay in our environment. QoL is a crucial concern for patients with endometriosis and practitioners and interventions should be tailored accordingly depending on each patient ’s needs. In our s eries, the average EHP -5 score showed a severe deterioration in quality of life. To our knowledge, the current study is the first to evaluate QoL in p a- tients with a validated questionnaire in a sub-Saharan population. We opt to use the EHP-5 questionnaire, a validated short version of the EHP -30 questionnaire exhibiting the same picture of health items but with less restrictive to complete [18]. Moreover, the simplicity and relevance of the EHP -5 questionnaire has been proven to assess the QoL of patients with endometriosis representing an adequate tool to assess the impact of medic al and surgical management [2] [19] [20]. In addition, we demonstrated the relation between the degree of QoL alt e- ration with some characteristics such as an inverse correlation with the age of the patients. Indeed, patients over 36 years old had a slight alteration compared to younger patients. Similarly, we observed that patients with history of labor had a lower impact on QoL. This agrees with a previous multicentric intern a- tional study evaluating the QoL using SF -36 questionnaire in patients with col o- rectal endometriosis showing that patients with previous childbirth or without infertility had a better QoL , especially concerning the Mental Component Su m- mary (MCS). On the other hand, we noted that women with a high s o- cio-economic level presented a very severe alteration in the quality of life. this could be explained by the fact that these groups of patients have access to care because they have financial means, but unfortunately , they consulted several doctors who could not find a solution to their solution on the grounds that there was no precise diagnosis whereas these patients had signs suggestive of the di s- M. Sibo et al. DOI: 10.4236/ojog.2023.135078 915 Open Journal of Obstetrics and Gynecology ease so most of them were thrown into the beliefs that it was a curse. We must also emphasize that beyond the severity of the symptoms, it is important to con- sider all the epidemiological characteristics of the patients. The EFI score was developed as a reproductive tool to predict the likelihood of spontaneous conception after surgery for infertile patients with endometriosis [20]-[24]. Our results go hand in hand with those found by Ferrier and collab o- rators, we all note that the EFI score 4 to 6 were the most found in our studies and this reinforces the orientation of inf ertile patients with endometriosis t o- wards medically assisted procreation whose cost is already very high and less a c- cessible in our environment not only for financial constraints but also and above all a lack of technical support for medically assisted procreation. Some limitations of this study are worth highlighting. First, the retrospective nature of the study may be a source of bias. Patients’ answers regarding their quality of life before the procedure cannot be as precise as would be desirable, as it depends entirely on the patients ’ recollection over a variable time scale. Ho w- ever, we believe this is offset by the fact that people with chronic pain, including endometriosis, usually live with their condition for long periods of time and therefore tend to have a clear idea of the nature of their symptoms . Second, the small sample size is also a potential bias. However, our goal was to have a h o- mogeneous population with the diagnosis of endometriosis assessed not only on symptoms or imaging criteria but by systematic laparoscopy although Pascoal et al. pointed out that they found that the respective sensitivity and specificity of laparoscopy are 90 % - 94% and 40% - 79% justifying, as in the current study, histological confirmation [25]. Finally, no attempt was made to evaluate the changes in QoL after operative laparoscopy while previous studies have reported on the relevance of QoL questionn aire post treatment to evaluate if patients had improvement in their quality of life after treatment [19]. Despite some limit a- tions of the present study, its stren gth is that it will create a national awareness of the problems of endometriosis and therefore lead to system wide changes that will improve the care of women with endometriosis in sub-Saharan Africa. 5. Conclusion Despite some limitation s, our preliminary study highlights that in sub -Saharan Africa, the diagnosis of endometriosis is delayed and associated with a severe a l- teration in quality of life. Moreover, diagnosis of endometriosis seems to be r e- stricted to women with high social level s. Therefore, further efforts are required to develop a health policy to decrease delay for diagnosis with potential benefit s on symptoms, quality of life, fertility while limiting stigma and psychological ef- fects of this debilitating pathology. Conflicts of Interest The authors declare no conflicts of interest regarding the publication of this p a- per. M. Sibo et al. DOI: 10.4236/ojog.2023.135078 916 Open Journal of Obstetrics and Gynecology

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