{"paper_id":"a212314b-fe13-4ee3-bf0d-51cc8e3889d1","body_text":"The ELEMI healthcare professional Study 1 \n 2 \n1,4Gayathri Delanerolle, 2Yunshan Li *, 4Heitor Cavalini *,4Katharine Barnard-Kelly, 3 \n4Katheryn Elliot, 5Vanessa Raymont, 10Nicola Pluchino, 11Idaliz Flores, 5Sohier Elneil, 4 \n12Kingshuk Majumder, 14Amy Boyd Welsh, 13Martin Sillem, M. Louise Hull, 8 Rebecca 5 \nO’Hara8, 4Shanaya Rathod, 6Ashish Shetty, 2,8Jian Qing Shi**, 7Dharani K 6 \nHapangama**, 3,4Peter Phiri** 7 \n 8 \nAffiliations 9 \n 10 \n1Nuffield Department of Primary Health Care, University of Oxford, OX3 7JX, Oxford, 11 \nUK  12 \n2Southern University of Science and Technology, Shenzhen, 518055, China  13 \n3Psychology Department, Faculty of Environmental and Life Sciences, University of 14 \nSouthampton, SO17 1BJ, Southampton, UK  15 \n4Research & Innovation Department, Southern Health NHS Foundation Trust, SO40 16 \n2RZ, UK 17 \n5Department of Psychiatry, University of Oxford, OX3 7JX, Oxford, UK 18 \n6University College London, London, UK  19 \n7University of Liverpool, UK 20 \n8 Robinson Research Institute, University of Adelaide, Australia, 5006 21 \n9 National Center for Applied Mathematics Shenzhen, China 22 \n10Lausanne University Hospital, Lausanne, Switzerland 23 \n11School of Medicine and Ponce Research Institute, Ponce Health Science University 24 \n12Manchester University Hospitals NHS Foundation Trust 25 \n13University Hospital Homburg, Germany 26 \n14 Nuffield Department of Medicine, University of Oxford, OX3 7JX, Oxford, UK  27 \n 28 \n 29 \n 30 \n 31 \n 32 \nCorresponding author: Peter Phiri 33 \nDirector of Research & Innovation/ Visiting Fellow,  34 \nResearch & Innovation Department, Southern Health NHS Foundation Trust, Clinical 35 \nTrials Facility, Tom Rudd Unit Moorgreen Hospital,  36 \nBotley Road, West End, Southampton SO30 3JB,  37 \nUnited Kingdom  38 \npeter.phiri@southernhealth.nhs.uk 39 \n 40 \n 41 \n**Shared last author 42 \n*Shared second author 43 \n 44 \nConflicts of interest 45 \nPP has received research grant from Novo Nordisk, and other, educational other from 46 \nJohn Wiley & Sons, other from Janssen Cilag, outside the submitted work. SR reports 47 \nother from Janssen, Lundbeck and Otsuka outside the submitted work. All other authors 48 \nreport no conflict of interest. The views expressed are those of the authors and not 49 \nnecessarily those of the NHS, the National Institute for Health Research, the 50 \nDepartment of Health and Social Care or the Academic institutions. 51 \n 52 \n 53 \nAvailability of data and material 54 \nThe authors will consider sharing the dataset gathered upon receipt of reasonable 55 \nrequests. 56 \n  57 \nCode availability 58 \nThe authors will consider sharing the dataset gathered upon receipt of reasonable 59 \nrequests. 60 \n  61 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \nNOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.\n\nAuthor contributions 62 \nGD, AS and PP developed the study protocol and embedded this within the ELEMI 63 \nproject’s work-package 2. GD, YL and JQS designed and completed the statistical 64 \nanalysis. All authors critically appraised and commented on previous versions of the 65 \nmanuscript. All authors read and approved the final manuscript. 66 \n 67 \n  68 \nEthics approval 69 \nHRA REC approval 21/HRA/3500 was obtained prior to the study initiation.  70 \n  71 \nConsent to participate 72 \nAll participants consented to take part in this study.  73 \n  74 \nConsent for publication 75 \nAll authors consented to publish this manuscript.  76 \n  77 \nAcknowledgements 78 \nThe authors acknowledge support from Southern Health NHS Foundation Trust.  79 \n 80 \nWords: TBC 81 \n 82 \n 83 \n 84 \n 85 \n 86 \n  87 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\nAbstract 88 \nIntroduction  89 \nEndometriosis impacts 1 in 10 women and can be a debilitating disease. Late diagnosis 90 \nis a major challenge with Endometriosis, contributing further to the exacerbation of 91 \nsymptoms and suboptimal clinical management. Regardless of the commonality of the 92 \ncondition, public awareness and research around endometriosis is severely lacking.  93 \n 94 \n 95 \nMethods 96 \nTo explore the knowledge base about Endometriosis we developed a digital cross-97 \nsectional study. We used the Qualtrics XM platform and developed a questionnaire.  98 \nThe primary objective of the study was to report the understanding of Endometriosis 99 \namong healthcare professionals in a mental healthcare setting in the UK.  100 \n 101 \nResults:  102 \nWe gathered the responses of 144 healthcare professionals, although only 68 103 \nparticipants responded to all questions. Approximately 96% of participants agreed that 104 \nthere is a need for a comprehensive clinical strategy where mental health care services 105 \ncould assist women very early in the pathway. Around 63.1% confirmed awareness of 106 \nendometriosis although the /g2031 /g2870 (p-value=0.158) test showed that the perceived clinical 107 \nknowledge was not necessarily associated with their profession. Over 92% of 108 \nparticipants confirmed that it would be useful to conduct mental health-based research 109 \namong endometriosis patients.  110 \n 111 \nDiscussion: It is clear than patients with endometriosis would greatly benefit from a 112 \nstreamlined clinical pathway. It would also have financial benefits to the NHS, including 113 \nless visits to A&E. The absence of comprehensive knowledge and understanding 114 \namongst healthcare professional on endometriosis leads to delayed diagnosis and 115 \ntreatment, exacerbating their psychological and physiological symptoms.  116 \n 117 \nConclusions:  118 \nOur study shows the importance of funding mental health research to further add to the 119 \nbody of knowledge in order to develop evidence based clinical practices that are equally 120 \nacceptable to women with endometriosis. This will have benefits for both the patients, 121 \nhealthcare professional, and also the NHS. It will enable for better treatment pathways 122 \nand symptom management, aiding the development for improved healthcare policies.  123 \n 124 \n 125 \n  126 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\nIntroduction  127 \n 128 \nEndometriosis is a common disease characterised by the presence of endometrial-like 129 \ntissue outside the uterus, which leads to adhesions and fibrosis as the tissue breaks 130 \ndown and regenerates in response to cyclical reproductive hormones 1. Key symptoms 131 \namong women with endometriosis include chronic pelvic pain, dysmenorrhoea, period-132 \nrelated or cyclical urinary and gastrointestistinal symptoms, and dyspareunia. Many 133 \nwomen report depression and anxiety, in addition to a variety of mental health 134 \ndisturbances that may require clinical management 1. Women with endometriosis are 135 \nalso at high risk of developing other health problems and have an increased life-time 136 \nrisk of health multimorbidity and polypharmacy to manage this condition long-term2.  137 \n 138 \nAn estimated 1.5 million women are likely to have endometriosis in the United Kingdom 139 \n(UK), which is similar to the estimates for asthma or diabetes 3. Endometriosis UK 140 \nreported 62% of women between the ages of 16 and 24 years in the UK lack awareness 141 \nof endometriosis, whilst 74% of men do not know about the disease 4. The National 142 \nHealth Service (NHS) in the UK provides specialist endometriosis centres in a variety of 143 \ngeographical areas, although these are not always universally accessible to patients. As 144 \nthe NHS has primary, secondary and tertiary care settings, a comprehensive data-145 \nlinkage healthcare record may not be available to streamline the complex clinical 146 \nmanagement required for endometriosis care 5. The initial access point for all 147 \nendometriosis patients is primary care, where General Practitioners (GPs) provide a 148 \nprovisional clinical diagnosis and treatment plan prior to the initiation of any acute or 149 \nchronic assessments conducted within secondary and tertiary care settings5.  150 \n 151 \nEndometriosis patients in the UK frequently access Accident and Emergency (A&E) 152 \nservices to help with emergent symptoms of disease 4. Endometriosis diagnosis might 153 \nbe difficult since there is no definite diagnostic test and symptoms vary greatly across 154 \npeople. Laparoscopy, which includes inserting a camera via a tiny incision in the 155 \nabdomen to see the pelvic organs and any apparent endometriotic lesions, is the gold 156 \nstandard for diagnosis 6. This technique, however, is invasive and not often easily 157 \naccessible to patients. 158 \n 159 \nEndometriosis treatment choices are determined by the severity of symptoms, the 160 \nextent of the illness, and the patient's age and reproductive objectives. Nonsteroidal 161 \nanti-inflammatory medicines (NSAIDs) are used to treat pain, as are hormonal 162 \ntreatments such as combination oral contraceptives, progestins, gonadotropin-releasing 163 \nhormone (GnRH) agonists, and danazol 1,7. In situations when medicinal treatment is 164 \ninadequate, surgical intervention may be required, which may include the removal of 165 \nendometriotic lesions and adhesions, as well as hysterectomy and bilateral salpingo-166 \noophorectomy1,8. 167 \n 168 \nDespite the fact that endometriosis is common and has a substantial effect on women's 169 \nhealth, there is a dearth of public awareness and research funding for this ailment. To 170 \nenhance early identification, diagnosis, and treatment of endometriosis, there is a need 171 \nfor improved education and awareness among the general public, healthcare 172 \npractitioners, and legislators. Additionally, further studies are required to better 173 \nunderstand the disease's underlying causes, create more effective therapies, and 174 \neventually improve the life experience for women with endometriosis. 175 \n 176 \n 177 \nMethods 178 \nWe conducted a cross-sectional survey to explore the understanding of Endometriosis 179 \namong health providers. Our primary aim was to evaluate and report the understanding 180 \nof Endometriosis among mental healthcare staff in the UK.  181 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n 182 \nRecruitment 183 \nAll healthcare providers are eligible to take part in this study through the online survey. 184 \nParticipants will be invited to participate in the study via multiple media sources 185 \nincluding intranet, email invites and social media, newsletters and communication 186 \ncampaigns supported by their organisations, deployed online via the NIHR and social 187 \nmedia. All participants will be required to complete the survey at a single time point only 188 \n 189 \nInclusion Criteria 190 \n• ≥ 18 years  191 \n• Any gender  192 \n• Healthcare staff working directly with women who have endometriosis  193 \n• Healthcare staff working indirectly with women who may have endometriosis 194 \n(e.g., women’s health services, tertiary care centres such as IAPT)  195 \n• Healthcare staff who have access to a smartphone, tablet or computer to be able 196 \nto complete the survey online.  197 \n 198 \nSurvey details  199 \nAn online Qualtrics XM platform survey will approximately take 10 -15 minutes to 200 \ncomplete following the completion of consent. The survey consists of demographic 201 \ndetails, the Pandemic Stress Index, the Flourishing Scale, and the Compassion Fatigue 202 \nScale.  203 \n 204 \nEthical Approval 205 \nThis study received HRA REC approval 21/HRA/3500 prior to the study initiation.  206 \n 207 \nDemographical analysis 208 \nA demographic analysis was conducted to analyse the questionnaire data, using 209 \ndescriptive statistics including percentage, mean, median and standard deviation. 210 \nPopulation characteristics of gender, profession, healthcare setting and years of service 211 \namong the study participants were also analysed.  212 \n 213 \nNon-parametric statistical test 214 \n 215 \nNon-parametric statistical tests were applied to test whether there was significant 216 \ndifference between responses based on gender, profession and healthcare setting. Chi-217 \nSquare ( χ /g2870) tests were used to assess differences in responses amongst professions 218 \nwhen the answer was nominal. Wilcoxon-Mann-Whitney and Kruskal-Wallis tests were 219 \nused (the latter was used for the data with more than two groups). The grouping 220 \nvariables included gender, profession and health care setting (primary, secondary or 221 \ntertiary). Significance was determined by a p value < 0.05. The analysis was undertaken 222 \nusing the SciPy 1.7.1 package with Python 3.9.7. 223 \n 224 \nWe merged three healthcare professional groups, academic scientists, radiologists and 225 \nresearchers, together with the original “other” ((\"other\" is a group among several 226 \nprofessions and is derived from the original \"academic scientists\", \"radiologists\", 227 \n\"researchers\" and \"other\".)  as one group (s till denoted as ‘other’) since the number 228 \nunder each of the groups was too small. We then produced a contingency table to 229 \nconduct a χ /g2870 test to report the difference in opinions between this group and the other 230 \ngroups. 231 \nWe also ran a post-hoc study to investigate the disparities in endometriosis knowledge 232 \nacross mental healthcare employees and other healthcare experts. Since the number of 233 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\nparticipants in each group was limited, we combined three healthcare professional 234 \ngroups (academic scientists, radiologists, and researchers) with the original \"other\" 235 \ngroup to form one group (denoted as \"other\"). 236 \nWe pooled the different healthcare groups to produce a contingency table to conduct a 237 \nχ /g2870 test to report the difference in opinions between this group and the other groups. The 238 \nthreshold of significance was fixed at p=<0.05. This study was also carried out using 239 \nPython 3.9.7 and the SciPy 1.7.1 module. 240 \nAll participants provided informed permission before being permitted to view the survey. 241 \nThe survey was entirely optional, and participants were free to leave at any moment. 242 \nThe University of Bristol Ethics Committee authorised the project. 243 \nThe questionnaire (See Supplementary document A) was created using current 244 \nresearch, and assistance from professionals with endometriosis treatment expertise. It 245 \nincluded 26 questions on basic endometriosis knowledge, diagnosis, treatment choices, 246 \nand the effect of endometriosis on patients' mental health. Additionally, two validated 247 \nquestionnaires were also included. The first was the ‘Flourishing Scale’, an 8-item 248 \nsummary measure of self-perceived purpose, optimism, and self-esteem. The second 249 \nwas the ‘Compassion Fatigue Scale’, a 13-item scale measuring the psychological, 250 \nphysical, and emotional impact of working within a care role. 251 \nThe poll was sent out through multiple methods, including social media, email, and 252 \nprofessional networks, with a focus on mental healthcare workers in the United 253 \nKingdom. From May to July 2021, data was collected, and 727 replies were obtained. 254 \nThe data was analysed using the above-mentioned statistical software programs to find 255 \nany significant variations in knowledge and awareness of endometriosis across UK 256 \nhealthcare workers, with a special emphasis on mental healthcare employees.  257 \n 258 \nResults 259 \n 260 \nThe sample included 144 healthcare professionals, however only 68 answered all the 261 \nquestions. Therefore, the rate of missing data for questions ranged from 35.4% to 262 \n77.8%. 263 \n 264 \nDemographical analysis  265 \nThe demographic analysis of the survey results revealed that the majority of the 266 \nparticipants (85.6%) were female, with the nursing profession having the largest 267 \nrepresentation (45.8%), followed by psychology/psychotherapy (18.3%), and medicine 268 \n(11.6%). The majority of participants (52.7%) were from secondary care settings, 269 \nfollowed by primary care (29.5%) and tertiary care (17.8%). The participants' average 270 \nnumber of years of service was 12.5 years. 271 \n 272 \nGender 273 \nOf the 144 participants, 78 participants (54.2%) were females, 13 (9.0%) were males, 2 274 \n(1.4%) preferred not to say and for 51 participants’ (35.4%) gender information was 275 \nmissing (Figure 1 and Supplementary Table 1).  276 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n277 \nFigure 1 Gender distribution of participants 278 \n 279 \nProfession 280 \nThe participants comprised psychiatrists or mental health staff 35 281 \n(16.7%),  researchers 3 (2.1%),, a radiologist1 (0.7%) an academi282 \nand other clinical groups 29 (20.1%) (Figure 2 and Supplementary283 \n51 participants’ (35.4%) did not complete the professional informatio284 \n 285 \n286 \n 287 \nFigure 2 The profession distribution of participants 288 \n 289 \nProfessional experience  290 \nParticipants had a mean of 102.9 months (SD: 118.8), in thei291 \n(Figure 3). A total of 39 participants’ (27.1%) were working with292 \n(25.0%) at secondary level, 7 (4.9%) were at tertiary level and 11 293 \nlevels. Fifty one participants (35.4%) did not report this inform294 \nSupplementary Table 3). 295 \n296 \nFigure 3 Participant’s duration in chosen profession 297 \nAcademic \nScientist\n1%\nNurse\n17%\nOther\n20%\nPsychiatrist/ \nMental Health \nstaff\n24%\nRadiologist\n1%\nResearcher\n2%\nMissig data \n35%\n0%\n \n5 (24.3%),  nurses 24 \nmic scientist  1 (0.7%)  \nary Table 2 ). A total of \ntion section.  \n \neir chosen profession \nithin primary care,  36 \n1 (7.6%) were at other \nrmation (Figure 4 and \n \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n 298 \n 299 \n 300 \n301 \nFigure 4 Healthcare setting of participants 302 \n 303 \nNon-parametric statistical tests 304 \nThree primary themes were reported by all the participants in relat305 \nassociated knowledge and practice.  306 \n 307 \nPerceived Clinical Knowledge 308 \nApproximately 63.1% of the participants confirmed that they knew 309 \nand were confident in their level of clinical knowledge (Supplem310 \nFigure 5). The  test showed that perceived clinical knowledge 311 \nlinked to their profession (p-value=0.158). 312 \n313 \nFigure 5. Contingency chart indicating agreement with the questions: “314 \nEndometriosis is? Are you comfortable with your level of clinical know315 \n 316 \n Endometriosis Clinical Pathway 317 \nA total of 96% of the participants agreed that they feel Endomet318 \nbenefit from a comprehensive clinical pathway that could be 319 \nprimary, secondary and tertiary care (Figure 6), whilst 4.0% did not 320 \nThe  test of p-value of 1.0 in Supplementary Table 5 shows the321 \ngroups are consistent.  322 \n 323 \n 324 \n 325 \n 326 \n 327 \nFigure 6. Contingency graph indicating agreement with “Do you think pat328 \nwould benefit from more comprehensive pathway that could be universa329 \nprimary, secondary and tertiary care?” 330 \n \nlation to Endometriosis \nw about Endometriosis \nementary Table 4 and \ne was not significantly \n \ns: “Do you know what \nowledge around it?” \netriosis patients would \ne implemented across \not agree with this view. \nhe opinions in different  \npatients with endometriosis \nrsally implemented across \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n 331 \nMental Health Research 332 \nApproximately 92.3% of all participants agreed that it would be use333 \nhealth-based research among women with endometriosis to better u334 \nand develop clinical, and non- clinical interventions; whilst 7.7% did335 \nstatement (Figure 7 and Supplementary Table 6). The  test s336 \n0.556 and that the views may not necessarily be linked to their profe337 \n 338 \n 339 \n340 \nFigure 7. Contingency chart indicating agreement with “Do you think it w341 \nmental health-based research for endometriosis women so that better cl342 \ninterventions can be developed?” 343 \n 344 \nSatisfaction  345 \nParticipants reported varying levels of satisfaction with the suppo346 \nservices to endometriosis patients. A total of 10.4% of par347 \ndissatisfied, 12.5% dissatisfied, 54.2% remained neutral, 20.8% sat348 \nsatisfied Although there were differing views among the diff349 \nprofessionals (Table 1) this did not reach statistical significance (p-v350 \n 351 \nTable 1 Satisfaction based on the services provided to endometriosis patie352 \n 353 \nProfession Very \ndissatisfied \nDissatisfied Neutral \n/Not sure \nSatisfied\nNurse 4 20.0% 3 15.0% 9 45.0% 4 20.\nPsychiatrist \n/Mental health \nstaff \n1 3.6% 3 10.7% 17 60.7% 6 21.\nTotal 5 10.4% 6 12.5% 26 54.2% 10 20.\n 354 \nNote: the p-value of  test was 0.158, showing no significant difference of satisf355 \nprofessions; the number of missing answers was 95 leading to a missin356 \n 357 \nParticipant mental health and wellbeing 358 \nThere were two scale questionnaires (Flourishing Scale and Compa359 \nto measure participants' mental health which included their quali360 \nquality of life score for all participants was 45.26 (SD: 7.86) out of 5361 \nhigher the score was the better life quality it indicated. To determin362 \nsignificant difference of the scale scores between different gender363 \nsetting, Wilcoxon-Mann-Whitney test s were performed. There364 \ndifference in quality-of-life scores between different professions (p365 \n9). The means score among the nursing staff was 48.59, psychiatri366 \n47.11 and researchers 47; which was higher than that of the radio367 \nno statistically significant difference based on gender (p=0.231) or 368 \nFigure 9).  369 \nseful to conduct mental \nr understand, navigate \ndid not agree with this \nt show ed a p-value of \nofession.   \n \n would be useful to conduct \n clinical and/or non-clinical \nport provided by local \narticipants were very \nsatisfied and 2.1% very \nifferent categories of \nvalue = 0.158).  \natients by profession \nied Very \nsatisfied \nTotal \n0.0% 0 0.0% 20 \n1.4% 1 3.6% 28 \n0.8% 1 2.1% 48 \ntisfaction between different \ning rate of 66.0%. \npassion Fatigue Scale) \nality of life. The mean \nf 56 (Figure 8) and the \nine whether there was \ners, professionals and \nre was a significant \n(p-value: 0.001, Figure \ntrist/mental health staff \niologist 32. There was \nor the setting (p=0.429, \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n370 \nFigure 8 Quality of life scores (there were 75 missing scores leading to a mi371 \n 372 \n373 \nFigure 9 (a) Boxplot illustrating quality of life by gender (those responding “prefe374 \nwere not included in analysis). The p-value was 0.231, showing no significan375 \ngenders. 376 \n(b) Boxplot of quality-of-life scores by profession. The p-value was 0.001, showi377 \nbetween professions. 378 \n(c) Boxplot of quality-of-life scores by health setting. The p-value was 0.429, s379 \ndifference between levels of local healthcare system. 380 \n 381 \n 382 \nA mean difficulty of life situation score of 47.38 (SD=19.47) out o383 \n(Figure 10) and the higher the score was the more difficult a life situ384 \ndetermine whether there was significant difference of the scale scor385 \ngenders, professions and settings, a Wilcoxon-Mann- Whitney test386 \ntest was performed. A p- value of 0.022 was recorded when the s387 \nprofessional groups were analysed, indicating a significant differenc388 \nthe groups. The mean score among psychiatrists/m ental hea389 \ncompared to researchers who had the lowest score at 37.5 (Figure390 \nsignificant differences between genders (p- value=0.315) or set391 \nFigure 11).  392 \n \nmissing rate of 52.1%) \n \nefer not to say” for gender \nant difference between \nwing significant difference \n, showing no significant \n \nt of 130 was recorded \nituation it indicated. To \ncores between different \nest or a Kruskal-Wallis \ne scores from different \nnce in scores between \nealth staff  was 50.18 \nure 11). There were no \netting (p -value=0.081, \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n393 \nFigure 10 Histogram of scale scores of difficulty of life situation (there were 112 394 \na missing rate of 77.8%) 395 \n 396 \n 397 \n398 \nFigure 11 (a) Boxplot of difficulty of life situation by gender (those responding399 \ngender were not included in analysis). The p-value was 0.315, showing no signif400 \ngenders. 401 \n(b) Boxplot of difficulty of life situation by profession. The p-value was 0.022402 \ndifference between professions. 403 \n(c) Boxplot of difficulty of life situation by setting. The p-value was 0.081, showing404 \nbetween levels of local healthcare system. 405 \nThe study found that there was a general lack of knowledge and aw406 \nendometriosis among UK healthcare professionals, especially those407 \nThe survey discovered that only 33.8% of individuals had a solid gr408 \n• Fewer than half of the individuals correctly identified the mos409 \nendometriosis symptoms, which included persistent pelvic pa410 \ndysmenorrhea (40.3%), and painful intercourse (36.3%). 411 \n• Just 29.5% of those polled were aware that there is no cure f412 \nand fewer than half were aware of the different treatment cho413 \n• As compared to primary care, healthcare personnel in interm414 \ncare settings had a greater knowledge of endometriosis. 415 \n• There were substantial gender and profession variations in e416 \ncomprehension and awareness, with female participants and417 \npsychology/psychotherapy having superior knowledge than m418 \nthose in other professions. 419 \n• Respondents perceived that e ndometriosis had a limited influ420 \nhealth, with just 28.8% of mental health providers noting the 421 \ndespair and anxiety in women with endometriosis. 422 \nOverall, the research recommends that greater information and train423 \nprofessionals, especially those in primary care and mental health, is424 \nthe treatment and care of endometriosis patients in the United Kingd425 \nDiscussion  426 \n \n missing scores leading to \n \nng “prefer not to say” for \nnificant difference between \n22, showing significant \ning no significant difference \nawareness of \nse in mental health. \n grasp of endometriosis. \nost prevalent \n pain (47.3%), \ne for endometriosis, \nhoices. \nrmediate and tertiary \n endometriosis \nnd those in nursing or \nn male participants and \nfluence on mental \ne increased risk of \naining for healthcare \n, is needed to enhance \ngdom. \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\n 427 \nA key finding of this study is that majority of healthcare providers felt that Endometriosis 428 \npatients would benefit from a streamlined clinical pathway. This could encompass timely 429 \nrecognition and diagnosis followed with medical treatment (e.g., surgery, medication). 430 \nPsychological support could also be integrated with this to help with the emotional 431 \nstrain.   Manifestations of physical and psychological symptoms can often be managed 432 \noptimally if the relevant professional staffing groups are aware of the clinical 433 \nbackground and ongoing care requirements of individual patients.  Better management 434 \nof patients could aid the NHS from a cost’s perspective as the potential number of A&E 435 \nvisits by Endometriosis patients could be reduced. In addition, having a more 436 \nstreamlined clinical pathway could improve both communication and engagement levels 437 \nbetween healthcare professionals and patients.  438 \n 439 \nEndometriosis is recognised by caregivers as a complex disease to manage. More 440 \nwomen than men participated in this study. It is important to improve gender 441 \nrepresentation in research but far more vital to understand if male healthcare 442 \nprofessionals are aware of and understand endometriosis. The mental health impact of 443 \nendometriosis among women indicates the need for better understanding and 444 \ncommunication methods, as shown by the ‘Endometriosis in the UK: time for change’ 445 \nreported published in 2020 by the All-Party Parliamentary Group. Patient advocacy 446 \ngroups have also indicated the need for better engagement and communication with 447 \nendometriosis patients, especially in relation to their mental health and wellbeing given 448 \nthe potential exacerbation of the condition due to stress. 449 \n 450 \nPatients with endometriosis engage with multidisciplinary teams at primary, secondary 451 \nand tertiary care settings. The professional background is an important facet to consider 452 \nexploring potential pathways and training requirements that could be designed in the 453 \nfuture. Each of the settings have a variety of localised pathways and access to seek 454 \nmental health services. The study findings revealed that there were considerable 455 \ndisparities in knowledge and awareness of endometriosis across UK healthcare 456 \nprofessionals. Healthcare personnel in secondary and tertiary care settings, for example, 457 \nhave more knowledge and awareness of endometriosis than those in primary care. 458 \nThere were also substantial disparities in endometriosis comprehension and awareness 459 \ndepending on gender and career. 460 \n 461 \nThe most common route used in the UK is via GPs based in a primary care setting, 462 \nalthough National Institute for Health and Care Excellence does not recommend the use 463 \nof anti-depressants as a first line treatment for women with endometriosis reporting 464 \nanxiety and/or depression at present. Given the current clinical pressures within primary 465 \nhealthcare services, often GPs refer patients to Improving Access to Psychological 466 \nTherapies (IAPT) services for psychological interventions as recommended by the 467 \nNational Institute for Clinical Excellence (NICE) guidelines. Cognitive behavioural 468 \ntherapy (CBT) can often be a first step to support patients who may want to use a non-469 \npharmacological route to secure therapeutic benefit. CBT could also be a sustainable 470 \ntool that could be used by patients in a manner that is suited to their needs, empowering 471 \nthem to also have improved health seeking behaviours. This may not be a consideration 472 \neither for the relevant mental healthcare professionals seeing the patients as it is not 473 \nwithin their standard health questionnaire obtained at the first visit. Subsequent visits 474 \nmay not have such questionnaires which could prevent a diagnosis of endometriosis 475 \nbeing recorded for those women who receive a late diagnosis, further complicating the 476 \nability to provide a more bespoke CBT approach. Furthermore, at present mental health 477 \ncare services currently lack endometriosis specific psychological protocols and the 478 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\ncomplexities with any ongoing acute care may not be taken into consideration when 479 \ngeneric approaches are administered to patients. Thereby, the therapeutic benefit may 480 \nbecome suboptimal quite quickly.  481 \n 482 \nAnother important consideration from this survey is that 92.3% of participants 483 \nconsidered that mental health research conducted among endometriosis patients could 484 \naid the understanding, management and development of more suitable interventions 485 \nthat can be sustainably used. Often endometriosis patients are in significant pain and 486 \ncould be using analgesics that could negatively influence their overall medium to long-487 \nterm wellbeing. Developing interventions that are of therapeutic benefit, minimally or 488 \nnon-invasive, and personalised to patient’s requirements could also increase the overall 489 \nhealthcare outcomes in a positive manner among endometriosis patients. To achieve 490 \nthis, extensive clinical research would be required involving key stakeholders (e.g., 491 \npatients and healthcare providers). This is an important point for funders as there is 492 \ncurrently a paucity of funding available for endometriosis and mental health research, 493 \nyet this seems to be a huge clinical need.  494 \n 495 \nEndometriosis is largely a medical ailment, but it is also connected with a high incidence 496 \nof anxiety, depression, and other mental health issues. This has the potential to 497 \nsignificantly affect patients' quality of life and overall health outcomes. Healthcare 498 \npractitioners must be aware of this and adopt a comprehensive approach to 499 \nendometriosis treatment that considers both the physical and psychological elements of 500 \nthe ailment. Professional inexperience coupled with the awareness of endometriosis 501 \nwas another vital facet the study explored to better understand potential gaps. 502 \nAccording to the findings of this survey, 63.9% of participants were unfamiliar with 503 \nendometriosis, and only 22.8% thought they had adequate expertise to handle 504 \nindividuals with the illness. The research  also emphasized the need of training and 505 \nraising awareness among healthcare workers. To understand and accept the complex 506 \nneeds of endometriosis patients, a cultural transformation may be required as patients 507 \nhave reported concerns where they have felt to have not been heard.  Endometriosis is 508 \nstill not commonly taught in medical colleges; therefore some doctors may be unaware 509 \nof the illness. Participants noted a need for improved endometriosis education and 510 \ntraining, as well as the need of having clear clinical standards for its care. This lack of 511 \nknowledge may lead to delays in diagnosis and effective treatment, which can have a 512 \nsubstantial impact on patients' physical and emotional health. This underlines the critical 513 \nneed for endometriosis education, include increased awareness around endometriosis 514 \nsymptoms, risk factors, diagnosis, and care, as well as impacts on mental health and 515 \nwell-being. 516 \n 517 \nAdditionally, the research discovered that healthcare providers may not always consider 518 \nthe effect of endometriosis on fertility and reproductive health. Endometriosis is a 519 \nprevalent cause of infertility, and people with the illness may need fertility therapy from a 520 \nprofessional in order to conceive. Nevertheless, the survey indicated that only 32.8% of 521 \nhealthcare providers were competent in handling endometriosis's reproductive 522 \ncomponents, and 43.6% were not confident in addressing fertility difficulties with 523 \npatients. 524 \n 525 \nLimitations 526 \nOne methodological limitation was that the sample size was of a medium scale. Future 527 \nresearch would benefit from having a larger sample size to draw more comprehensive 528 \nconclusions from some χ /g2870 tests. Due to this study taking place during the COVID-19 529 \npandemic, there were many challenges due to time constraints and availability of 530 \nhealthcare professionals in the UK.  531 \n 532 \nConclusion  533 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint \n\nThis research emphasizes the need of healthcare workers recognizing endometriosis, 534 \nits influence on patients' mental health and wellbeing, and its consequences for 535 \nconception and reproductive health. It is vital that healthcare providers obtain the 536 \nappropriate information and training in order to properly manage endometriosis patients 537 \nand give the support and care they need to enhance their overall quality of life. There is 538 \na need for a more simplified clinical route for endometriosis patients, which might 539 \nincrease communication and engagement levels between healthcare personnel and 540 \npatients. Comprehensive endometriosis education and training is required as well as the 541 \ncreation of endometriosis-specific psychological procedures. Healthcare services in the 542 \nUK would benefit from conducting mental health research among endometriosis women 543 \nto better understand the complex needs of the patients, alignment of these to develop 544 \npatient centric healthcare services, improve access to mental healthcare services in 545 \nareas where services currently exist and sustain these services to a growing population. 546 \nImproved interim healthcare policies and clinical guidelines should be in place that are 547 \nmore patient centric to meet the demands of the endometriosis patients.  548 \n 549 \n  550 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. 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Cochrane Database Syst 579 \nRev. 2017 Jan 23;1(1):CD004753. doi: 10.1002/14651858.CD004753.pub4. PMID: 580 \n28114727; PMCID: PMC6464974. 581 \n 582 \n[8] Bedaiwy MA, Alfaraj S, Yong P, Casper R. New developments in the medical 583 \ntreatment of endometriosis. Fertility and sterility. 2017 Mar 1;107(3):555-65. 584 \n 585 \n . CC-BY 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 18, 2023. ; https://doi.org/10.1101/2023.03.18.23287312doi: medRxiv preprint","source_license":"CC0","license_restricted":false}