The ELEMI healthcare professional Study

78 The authors acknowledge support from Southern Health NHS Foundation Trust. 79 80 Words: TBC 81 82 83 84 85 86 87 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint

88

89 Endometriosis impacts 1 in 10 women and can be a debilitating disease. Late diagnosis 90 is a major challenge with Endometriosis, contributing further to the exacerbation of 91 symptoms and suboptimal clinical management. Regardless of the commonality of the 92 condition, public awareness and research around endometriosis is severely lacking. 93 94 95

96 To explore the knowledge base about Endometriosis we developed a digital cross-97 sectional study. We used the Qualtrics XM platform and developed a questionnaire. 98 The primary objective of the study was to report the understanding of Endometriosis 99 among healthcare professionals in a mental healthcare setting in the UK. 100 101

102 We gathered the responses of 144 healthcare professionals, although only 68 103 participants responded to all questions. Approximately 96% of participants agreed that 104 there is a need for a comprehensive clinical strategy where mental health care services 105 could assist women very early in the pathway. Around 63.1% confirmed awareness of 106 endometriosis although the /g2031 /g2870 (p-value=0.158) test showed that the perceived clinical 107 knowledge was not necessarily associated with their profession. Over 92% of 108 participants confirmed that it would be useful to conduct mental health-based research 109 among endometriosis patients. 110 111

It is clear than patients with endometriosis would greatly benefit from a 112 streamlined clinical pathway. It would also have financial benefits to the NHS, including 113 less visits to A&E. The absence of comprehensive knowledge and understanding 114 amongst healthcare professional on endometriosis leads to delayed diagnosis and 115 treatment, exacerbating their psychological and physiological symptoms. 116 117

118 Our study shows the importance of funding mental health research to further add to the 119 body of knowledge in order to develop evidence based clinical practices that are equally 120 acceptable to women with endometriosis. This will have benefits for both the patients, 121 healthcare professional, and also the NHS. It will enable for better treatment pathways 122 and symptom management, aiding the development for improved healthcare policies. 123 124 125 126 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint

127 128 Endometriosis is a common disease characterised by the presence of endometrial-like 129 tissue outside the uterus, which leads to adhesions and fibrosis as the tissue breaks 130 down and regenerates in response to cyclical reproductive hormones 1. Key symptoms 131 among women with endometriosis include chronic pelvic pain, dysmenorrhoea, period-132 related or cyclical urinary and gastrointestistinal symptoms, and dyspareunia. Many 133 women report depression and anxiety, in addition to a variety of mental health 134 disturbances that may require clinical management 1. Women with endometriosis are 135 also at high risk of developing other health problems and have an increased life-time 136 risk of health multimorbidity and polypharmacy to manage this condition long-term2. 137 138 An estimated 1.5 million women are likely to have endometriosis in the United Kingdom 139 (UK), which is similar to the estimates for asthma or diabetes 3. Endometriosis UK 140 reported 62% of women between the ages of 16 and 24 years in the UK lack awareness 141 of endometriosis, whilst 74% of men do not know about the disease 4. The National 142 Health Service (NHS) in the UK provides specialist endometriosis centres in a variety of 143 geographical areas, although these are not always universally accessible to patients. As 144 the NHS has primary, secondary and tertiary care settings, a comprehensive data-145 linkage healthcare record may not be available to streamline the complex clinical 146 management required for endometriosis care 5. The initial access point for all 147 endometriosis patients is primary care, where General Practitioners (GPs) provide a 148 provisional clinical diagnosis and treatment plan prior to the initiation of any acute or 149 chronic assessments conducted within secondary and tertiary care settings5. 150 151 Endometriosis patients in the UK frequently access Accident and Emergency (A&E) 152 services to help with emergent symptoms of disease 4. Endometriosis diagnosis might 153 be difficult since there is no definite diagnostic test and symptoms vary greatly across 154 people. Laparoscopy, which includes inserting a camera via a tiny incision in the 155 abdomen to see the pelvic organs and any apparent endometriotic lesions, is the gold 156 standard for diagnosis 6. This technique, however, is invasive and not often easily 157 accessible to patients. 158 159 Endometriosis treatment choices are determined by the severity of symptoms, the 160 extent of the illness, and the patient's age and reproductive objectives. Nonsteroidal 161 anti-inflammatory medicines (NSAIDs) are used to treat pain, as are hormonal 162 treatments such as combination oral contraceptives, progestins, gonadotropin-releasing 163 hormone (GnRH) agonists, and danazol 1,7. In situations when medicinal treatment is 164 inadequate, surgical intervention may be required, which may include the removal of 165 endometriotic lesions and adhesions, as well as hysterectomy and bilateral salpingo-166 oophorectomy1,8. 167 168 Despite the fact that endometriosis is common and has a substantial effect on women's 169 health, there is a dearth of public awareness and research funding for this ailment. To 170 enhance early identification, diagnosis, and treatment of endometriosis, there is a need 171 for improved education and awareness among the general public, healthcare 172 practitioners, and legislators. Additionally, further studies are required to better 173 understand the disease's underlying causes, create more effective therapies, and 174 eventually improve the life experience for women with endometriosis. 175 176 177

178 We conducted a cross-sectional survey to explore the understanding of Endometriosis 179 among health providers. Our primary aim was to evaluate and report the understanding 180 of Endometriosis among mental healthcare staff in the UK. 181 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 182 Recruitment 183 All healthcare providers are eligible to take part in this study through the online survey. 184 Participants will be invited to participate in the study via multiple media sources 185 including intranet, email invites and social media, newsletters and communication 186 campaigns supported by their organisations, deployed online via the NIHR and social 187 media. All participants will be required to complete the survey at a single time point only 188 189 Inclusion Criteria 190 • ≥ 18 years 191 • Any gender 192 • Healthcare staff working directly with women who have endometriosis 193 • Healthcare staff working indirectly with women who may have endometriosis 194 (e.g., women’s health services, tertiary care centres such as IAPT) 195 • Healthcare staff who have access to a smartphone, tablet or computer to be able 196 to complete the survey online. 197 198 Survey details 199 An online Qualtrics XM platform survey will approximately take 10 -15 minutes to 200 complete following the completion of consent. The survey consists of demographic 201 details, the Pandemic Stress Index, the Flourishing Scale, and the Compassion Fatigue 202 Scale. 203 204 Ethical Approval 205 This study received HRA REC approval 21/HRA/3500 prior to the study initiation. 206 207 Demographical analysis 208 A demographic analysis was conducted to analyse the questionnaire data, using 209 descriptive statistics including percentage, mean, median and standard deviation. 210 Population characteristics of gender, profession, healthcare setting and years of service 211 among the study participants were also analysed. 212 213 Non-parametric statistical test 214 215 Non-parametric statistical tests were applied to test whether there was significant 216 difference between responses based on gender, profession and healthcare setting. Chi-217 Square ( χ /g2870) tests were used to assess differences in responses amongst professions 218 when the answer was nominal. Wilcoxon-Mann-Whitney and Kruskal-Wallis tests were 219 used (the latter was used for the data with more than two groups). The grouping 220 variables included gender, profession and health care setting (primary, secondary or 221 tertiary). Significance was determined by a p value < 0.05. The analysis was undertaken 222 using the SciPy 1.7.1 package with Python 3.9.7. 223 224 We merged three healthcare professional groups, academic scientists, radiologists and 225 researchers, together with the original “other” (("other" is a group among several 226 professions and is derived from the original "academic scientists", "radiologists", 227 "researchers" and "other".) as one group (s till denoted as ‘other’) since the number 228 under each of the groups was too small. We then produced a contingency table to 229 conduct a χ /g2870 test to report the difference in opinions between this group and the other 230 groups. 231 We also ran a post-hoc study to investigate the disparities in endometriosis knowledge 232 across mental healthcare employees and other healthcare experts. Since the number of 233 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint participants in each group was limited, we combined three healthcare professional 234 groups (academic scientists, radiologists, and researchers) with the original "other" 235 group to form one group (denoted as "other"). 236 We pooled the different healthcare groups to produce a contingency table to conduct a 237 χ /g2870 test to report the difference in opinions between this group and the other groups. The 238 threshold of significance was fixed at p=<0.05. This study was also carried out using 239 Python 3.9.7 and the SciPy 1.7.1 module. 240 All participants provided informed permission before being permitted to view the survey. 241 The survey was entirely optional, and participants were free to leave at any moment. 242 The University of Bristol Ethics Committee authorised the project. 243 The questionnaire (See Supplementary document A) was created using current 244 research, and assistance from professionals with endometriosis treatment expertise. It 245 included 26 questions on basic endometriosis knowledge, diagnosis, treatment choices, 246 and the effect of endometriosis on patients' mental health. Additionally, two validated 247 questionnaires were also included. The first was the ‘Flourishing Scale’, an 8-item 248 summary measure of self-perceived purpose, optimism, and self-esteem. The second 249 was the ‘Compassion Fatigue Scale’, a 13-item scale measuring the psychological, 250 physical, and emotional impact of working within a care role. 251 The poll was sent out through multiple methods, including social media, email, and 252 professional networks, with a focus on mental healthcare workers in the United 253 Kingdom. From May to July 2021, data was collected, and 727 replies were obtained. 254 The data was analysed using the above-mentioned statistical software programs to find 255 any significant variations in knowledge and awareness of endometriosis across UK 256 healthcare workers, with a special emphasis on mental healthcare employees. 257 258

259 260 The sample included 144 healthcare professionals, however only 68 answered all the 261 questions. Therefore, the rate of missing data for questions ranged from 35.4% to 262 77.8%. 263 264 Demographical analysis 265 The demographic analysis of the survey results revealed that the majority of the 266 participants (85.6%) were female, with the nursing profession having the largest 267 representation (45.8%), followed by psychology/psychotherapy (18.3%), and medicine 268 (11.6%). The majority of participants (52.7%) were from secondary care settings, 269 followed by primary care (29.5%) and tertiary care (17.8%). The participants' average 270 number of years of service was 12.5 years. 271 272 Gender 273 Of the 144 participants, 78 participants (54.2%) were females, 13 (9.0%) were males, 2 274 (1.4%) preferred not to say and for 51 participants’ (35.4%) gender information was 275 missing (Figure 1 and Supplementary Table 1). 276 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 277 Figure 1 Gender distribution of participants 278 279 Profession 280 The participants comprised psychiatrists or mental health staff 35 281 (16.7%), researchers 3 (2.1%),, a radiologist1 (0.7%) an academi282 and other clinical groups 29 (20.1%) (Figure 2 and Supplementary283 51 participants’ (35.4%) did not complete the professional informatio284 285 286 287 Figure 2 The profession distribution of participants 288 289 Professional experience 290 Participants had a mean of 102.9 months (SD: 118.8), in thei291 (Figure 3). A total of 39 participants’ (27.1%) were working with292 (25.0%) at secondary level, 7 (4.9%) were at tertiary level and 11 293 levels. Fifty one participants (35.4%) did not report this inform294 Supplementary Table 3). 295 296 Figure 3 Participant’s duration in chosen profession 297 Academic Scientist 1% Nurse 17% Other 20% Psychiatrist/ Mental Health staff 24% Radiologist 1% Researcher 2% Missig data 35% 0% 5 (24.3%), nurses 24 mic scientist 1 (0.7%) ary Table 2 ). A total of tion section. eir chosen profession ithin primary care, 36 1 (7.6%) were at other rmation (Figure 4 and . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 298 299 300 301 Figure 4 Healthcare setting of participants 302 303 Non-parametric statistical tests 304 Three primary themes were reported by all the participants in relat305 associated knowledge and practice. 306 307 Perceived Clinical Knowledge 308 Approximately 63.1% of the participants confirmed that they knew 309 and were confident in their level of clinical knowledge (Supplem310 Figure 5). The test showed that perceived clinical knowledge 311 linked to their profession (p-value=0.158). 312 313 Figure 5. Contingency chart indicating agreement with the questions: “314 Endometriosis is? Are you comfortable with your level of clinical know315 316 Endometriosis Clinical Pathway 317 A total of 96% of the participants agreed that they feel Endomet318 benefit from a comprehensive clinical pathway that could be 319 primary, secondary and tertiary care (Figure 6), whilst 4.0% did not 320 The test of p-value of 1.0 in Supplementary Table 5 shows the321 groups are consistent. 322 323 324 325 326 327 Figure 6. Contingency graph indicating agreement with “Do you think pat328 would benefit from more comprehensive pathway that could be universa329 primary, secondary and tertiary care?” 330 lation to Endometriosis w about Endometriosis ementary Table 4 and e was not significantly s: “Do you know what owledge around it?” etriosis patients would e implemented across ot agree with this view. he opinions in different patients with endometriosis rsally implemented across . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 331 Mental Health Research 332 Approximately 92.3% of all participants agreed that it would be use333 health-based research among women with endometriosis to better u334 and develop clinical, and non- clinical interventions; whilst 7.7% did335 statement (Figure 7 and Supplementary Table 6). The test s336 0.556 and that the views may not necessarily be linked to their profe337 338 339 340 Figure 7. Contingency chart indicating agreement with “Do you think it w341 mental health-based research for endometriosis women so that better cl342 interventions can be developed?” 343 344 Satisfaction 345 Participants reported varying levels of satisfaction with the suppo346 services to endometriosis patients. A total of 10.4% of par347 dissatisfied, 12.5% dissatisfied, 54.2% remained neutral, 20.8% sat348 satisfied Although there were differing views among the diff349 professionals (Table 1) this did not reach statistical significance (p-v350 351 Table 1 Satisfaction based on the services provided to endometriosis patie352 353 Profession Very dissatisfied Dissatisfied Neutral /Not sure Satisfied Nurse 4 20.0% 3 15.0% 9 45.0% 4 20. Psychiatrist /Mental health staff 1 3.6% 3 10.7% 17 60.7% 6 21. Total 5 10.4% 6 12.5% 26 54.2% 10 20. 354 Note: the p-value of test was 0.158, showing no significant difference of satisf355 professions; the number of missing answers was 95 leading to a missin356 357 Participant mental health and wellbeing 358 There were two scale questionnaires (Flourishing Scale and Compa359 to measure participants' mental health which included their quali360 quality of life score for all participants was 45.26 (SD: 7.86) out of 5361 higher the score was the better life quality it indicated. To determin362 significant difference of the scale scores between different gender363 setting, Wilcoxon-Mann-Whitney test s were performed. There364 difference in quality-of-life scores between different professions (p365 9). The means score among the nursing staff was 48.59, psychiatri366 47.11 and researchers 47; which was higher than that of the radio367 no statistically significant difference based on gender (p=0.231) or 368 Figure 9). 369 seful to conduct mental r understand, navigate did not agree with this t show ed a p-value of ofession. would be useful to conduct clinical and/or non-clinical port provided by local articipants were very satisfied and 2.1% very ifferent categories of value = 0.158). atients by profession ied Very satisfied Total 0.0% 0 0.0% 20 1.4% 1 3.6% 28 0.8% 1 2.1% 48 tisfaction between different ing rate of 66.0%. passion Fatigue Scale) ality of life. The mean f 56 (Figure 8) and the ine whether there was ers, professionals and re was a significant (p-value: 0.001, Figure trist/mental health staff iologist 32. There was or the setting (p=0.429, . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 370 Figure 8 Quality of life scores (there were 75 missing scores leading to a mi371 372 373 Figure 9 (a) Boxplot illustrating quality of life by gender (those responding “prefe374 were not included in analysis). The p-value was 0.231, showing no significan375 genders. 376 (b) Boxplot of quality-of-life scores by profession. The p-value was 0.001, showi377 between professions. 378 (c) Boxplot of quality-of-life scores by health setting. The p-value was 0.429, s379 difference between levels of local healthcare system. 380 381 382 A mean difficulty of life situation score of 47.38 (SD=19.47) out o383 (Figure 10) and the higher the score was the more difficult a life situ384 determine whether there was significant difference of the scale scor385 genders, professions and settings, a Wilcoxon-Mann- Whitney test386 test was performed. A p- value of 0.022 was recorded when the s387 professional groups were analysed, indicating a significant differenc388 the groups. The mean score among psychiatrists/m ental hea389 compared to researchers who had the lowest score at 37.5 (Figure390 significant differences between genders (p- value=0.315) or set391 Figure 11). 392 missing rate of 52.1%) efer not to say” for gender ant difference between wing significant difference , showing no significant t of 130 was recorded ituation it indicated. To cores between different est or a Kruskal-Wallis e scores from different nce in scores between ealth staff was 50.18 ure 11). There were no etting (p -value=0.081, . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 393 Figure 10 Histogram of scale scores of difficulty of life situation (there were 112 394 a missing rate of 77.8%) 395 396 397 398 Figure 11 (a) Boxplot of difficulty of life situation by gender (those responding399 gender were not included in analysis). The p-value was 0.315, showing no signif400 genders. 401 (b) Boxplot of difficulty of life situation by profession. The p-value was 0.022402 difference between professions. 403 (c) Boxplot of difficulty of life situation by setting. The p-value was 0.081, showing404 between levels of local healthcare system. 405 The study found that there was a general lack of knowledge and aw406 endometriosis among UK healthcare professionals, especially those407 The survey discovered that only 33.8% of individuals had a solid gr408 • Fewer than half of the individuals correctly identified the mos409 endometriosis symptoms, which included persistent pelvic pa410 dysmenorrhea (40.3%), and painful intercourse (36.3%). 411 • Just 29.5% of those polled were aware that there is no cure f412 and fewer than half were aware of the different treatment cho413 • As compared to primary care, healthcare personnel in interm414 care settings had a greater knowledge of endometriosis. 415 • There were substantial gender and profession variations in e416 comprehension and awareness, with female participants and417 psychology/psychotherapy having superior knowledge than m418 those in other professions. 419 • Respondents perceived that e ndometriosis had a limited influ420 health, with just 28.8% of mental health providers noting the 421 despair and anxiety in women with endometriosis. 422 Overall, the research recommends that greater information and train423 professionals, especially those in primary care and mental health, is424 the treatment and care of endometriosis patients in the United Kingd425

426 missing scores leading to ng “prefer not to say” for nificant difference between 22, showing significant ing no significant difference awareness of se in mental health. grasp of endometriosis. ost prevalent pain (47.3%), e for endometriosis, hoices. rmediate and tertiary endometriosis nd those in nursing or n male participants and fluence on mental e increased risk of aining for healthcare , is needed to enhance gdom. . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint 427 A key finding of this study is that majority of healthcare providers felt that Endometriosis 428 patients would benefit from a streamlined clinical pathway. This could encompass timely 429 recognition and diagnosis followed with medical treatment (e.g., surgery, medication). 430 Psychological support could also be integrated with this to help with the emotional 431 strain. Manifestations of physical and psychological symptoms can often be managed 432 optimally if the relevant professional staffing groups are aware of the clinical 433

and ongoing care requirements of individual patients. Better management 434 of patients could aid the NHS from a cost’s perspective as the potential number of A&E 435 visits by Endometriosis patients could be reduced. In addition, having a more 436 streamlined clinical pathway could improve both communication and engagement levels 437 between healthcare professionals and patients. 438 439 Endometriosis is recognised by caregivers as a complex disease to manage. More 440 women than men participated in this study. It is important to improve gender 441 representation in research but far more vital to understand if male healthcare 442 professionals are aware of and understand endometriosis. The mental health impact of 443 endometriosis among women indicates the need for better understanding and 444 communication methods, as shown by the ‘Endometriosis in the UK: time for change’ 445 reported published in 2020 by the All-Party Parliamentary Group. Patient advocacy 446 groups have also indicated the need for better engagement and communication with 447 endometriosis patients, especially in relation to their mental health and wellbeing given 448 the potential exacerbation of the condition due to stress. 449 450 Patients with endometriosis engage with multidisciplinary teams at primary, secondary 451 and tertiary care settings. The professional background is an important facet to consider 452 exploring potential pathways and training requirements that could be designed in the 453 future. Each of the settings have a variety of localised pathways and access to seek 454 mental health services. The study findings revealed that there were considerable 455 disparities in knowledge and awareness of endometriosis across UK healthcare 456 professionals. Healthcare personnel in secondary and tertiary care settings, for example, 457 have more knowledge and awareness of endometriosis than those in primary care. 458 There were also substantial disparities in endometriosis comprehension and awareness 459 depending on gender and career. 460 461 The most common route used in the UK is via GPs based in a primary care setting, 462 although National Institute for Health and Care Excellence does not recommend the use 463 of anti-depressants as a first line treatment for women with endometriosis reporting 464 anxiety and/or depression at present. Given the current clinical pressures within primary 465 healthcare services, often GPs refer patients to Improving Access to Psychological 466 Therapies (IAPT) services for psychological interventions as recommended by the 467 National Institute for Clinical Excellence (NICE) guidelines. Cognitive behavioural 468 therapy (CBT) can often be a first step to support patients who may want to use a non-469 pharmacological route to secure therapeutic benefit. CBT could also be a sustainable 470 tool that could be used by patients in a manner that is suited to their needs, empowering 471 them to also have improved health seeking behaviours. This may not be a consideration 472 either for the relevant mental healthcare professionals seeing the patients as it is not 473 within their standard health questionnaire obtained at the first visit. Subsequent visits 474 may not have such questionnaires which could prevent a diagnosis of endometriosis 475 being recorded for those women who receive a late diagnosis, further complicating the 476 ability to provide a more bespoke CBT approach. Furthermore, at present mental health 477 care services currently lack endometriosis specific psychological protocols and the 478 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint complexities with any ongoing acute care may not be taken into consideration when 479 generic approaches are administered to patients. Thereby, the therapeutic benefit may 480 become suboptimal quite quickly. 481 482 Another important consideration from this survey is that 92.3% of participants 483 considered that mental health research conducted among endometriosis patients could 484 aid the understanding, management and development of more suitable interventions 485 that can be sustainably used. Often endometriosis patients are in significant pain and 486 could be using analgesics that could negatively influence their overall medium to long-487 term wellbeing. Developing interventions that are of therapeutic benefit, minimally or 488 non-invasive, and personalised to patient’s requirements could also increase the overall 489 healthcare outcomes in a positive manner among endometriosis patients. To achieve 490 this, extensive clinical research would be required involving key stakeholders (e.g., 491 patients and healthcare providers). This is an important point for funders as there is 492 currently a paucity of funding available for endometriosis and mental health research, 493 yet this seems to be a huge clinical need. 494 495 Endometriosis is largely a medical ailment, but it is also connected with a high incidence 496 of anxiety, depression, and other mental health issues. This has the potential to 497 significantly affect patients' quality of life and overall health outcomes. Healthcare 498 practitioners must be aware of this and adopt a comprehensive approach to 499 endometriosis treatment that considers both the physical and psychological elements of 500 the ailment. Professional inexperience coupled with the awareness of endometriosis 501 was another vital facet the study explored to better understand potential gaps. 502 According to the findings of this survey, 63.9% of participants were unfamiliar with 503 endometriosis, and only 22.8% thought they had adequate expertise to handle 504 individuals with the illness. The research also emphasized the need of training and 505 raising awareness among healthcare workers. To understand and accept the complex 506 needs of endometriosis patients, a cultural transformation may be required as patients 507 have reported concerns where they have felt to have not been heard. Endometriosis is 508 still not commonly taught in medical colleges; therefore some doctors may be unaware 509 of the illness. Participants noted a need for improved endometriosis education and 510 training, as well as the need of having clear clinical standards for its care. This lack of 511 knowledge may lead to delays in diagnosis and effective treatment, which can have a 512 substantial impact on patients' physical and emotional health. This underlines the critical 513 need for endometriosis education, include increased awareness around endometriosis 514 symptoms, risk factors, diagnosis, and care, as well as impacts on mental health and 515 well-being. 516 517 Additionally, the research discovered that healthcare providers may not always consider 518 the effect of endometriosis on fertility and reproductive health. Endometriosis is a 519 prevalent cause of infertility, and people with the illness may need fertility therapy from a 520 professional in order to conceive. Nevertheless, the survey indicated that only 32.8% of 521 healthcare providers were competent in handling endometriosis's reproductive 522 components, and 43.6% were not confident in addressing fertility difficulties with 523 patients. 524 525

526 One methodological limitation was that the sample size was of a medium scale. Future 527 research would benefit from having a larger sample size to draw more comprehensive 528

from some χ /g2870 tests. Due to this study taking place during the COVID-19 529 pandemic, there were many challenges due to time constraints and availability of 530 healthcare professionals in the UK. 531 532

533 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint This research emphasizes the need of healthcare workers recognizing endometriosis, 534 its influence on patients' mental health and wellbeing, and its consequences for 535 conception and reproductive health. It is vital that healthcare providers obtain the 536 appropriate information and training in order to properly manage endometriosis patients 537 and give the support and care they need to enhance their overall quality of life. There is 538 a need for a more simplified clinical route for endometriosis patients, which might 539 increase communication and engagement levels between healthcare personnel and 540 patients. Comprehensive endometriosis education and training is required as well as the 541 creation of endometriosis-specific psychological procedures. Healthcare services in the 542 UK would benefit from conducting mental health research among endometriosis women 543 to better understand the complex needs of the patients, alignment of these to develop 544 patient centric healthcare services, improve access to mental healthcare services in 545 areas where services currently exist and sustain these services to a growing population. 546 Improved interim healthcare policies and clinical guidelines should be in place that are 547 more patient centric to meet the demands of the endometriosis patients. 548 549 550 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint

551 [1] Delanerolle G, Ramakrishnan R, Hapangama D, Zeng Y, Shetty A, Elneil S, Chong 552 S, Hirsch M, Oyewole M, Phiri P, Elliot K, Kothari T, Rogers B, Sandle N, Haque N, 553 Pluchino N, Silem M, O'Hara R, Hull ML, Majumder K, Shi JQ, Raymont V. A systematic 554 review and meta-analysis of the Endometriosis and Mental-Health Sequelae; The 555 ELEMI Project. Women’s Health (Lond). 2021 Jan-Dec; 17: 17455065211019717. doi: 556 10.1177/17455065211019717. PMID: 34053382; PMCID: PMC8182632. 557 558 [2] Surrey ES, Soliman AM, Johnson SJ, Davis M, Castelli-Haley J, Snabes MC. Risk of 559 Developing Comorbidities Among Women with Endometriosis: A Retrospective Matched 560 Cohort Study. J Womens Health (Larchmt). 2018 Sep;27(9):1114-1123. doi: 561 10.1089/jwh.2017.6432. Epub 2018 Aug 2. PMID: 30070938. 562 563 [3] Griffith VA. The syndemic of endometriosis, stress, and stigma. Stigma syndemics: 564 new directions in biosocial health. 2017 Sep 7:35-60 565 566 [4] All Party Parliamentary Group on Endometriosis (2020). Endometriosis in the UK: 567 time for change. Available at: https://www.endometriosis-568 uk.org/sites/default/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf 569 570 [5] Pugsley Z, Ballard K. Management of endometriosis in general practice: the pathway 571 to diagnosis. British Journal of General Practice. 2007 Jun 1;57(539):470-6. 572 573 [6] National Institute of Care and Health Excellence (2017). Endometriosis: diagnosis 574 and management. Available from: Overview | Endometriosis: diagnosis and 575 management | Guidance | NICE 576 577 [7] Brown J, Crawford TJ, Allen C, Hopewell S, Prentice A. Nonsteroidal anti-578 inflammatory drugs for pain in women with endometriosis. Cochrane Database Syst 579 Rev. 2017 Jan 23;1(1):CD004753. doi: 10.1002/14651858.CD004753.pub4. PMID: 580 28114727; PMCID: PMC6464974. 581 582 [8] Bedaiwy MA, Alfaraj S, Yong P, Casper R. New developments in the medical 583 treatment of endometriosis. Fertility and sterility. 2017 Mar 1;107(3):555-65. 584 585 . CC-BY 4.0 International licenseIt is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint