{"paper_id":"912ecb15-2331-4aed-be89-f48511bbc7a3","body_text":"1 \n \nUnderstanding diagnostic delay for endometriosis: a scoping review 1 \n 2 \nMs Jodie Fryer a 3 \n 4 \nDr Amanda J. Mason-Jonesb   5 \nORCID: https://orcid.org/0000-0002-4292-3183 6 \n 7 \nDr Amie Woodwardc 8 \nORCID: https://orcid.org/0000-0002-9579-4012 9 \n 10 \na North Yorkshire County Council, Harrogate, UK. 11 \n 12 \nb Department of Health Sciences, University of York, UK. 13 \nc Institute for Health and Care Improvement, York St John University, UK. 14 \nCorresponding author: amanda.mason-jones@york.ac.uk 15 \nRoom 233, Seebohm Rowntree Building, Department of Health Sciences, University of 16 \nYork, Heslington, YO10 5DD, UK. 17 \nTel:+44(0)1904321290 18 \n 19 \nAcknowledgements 20 \nWe thank our employers for supporting this work. JF received support from Harrogate 21 \nBorough Council, AMJ received support from the University of York and AW received 22 \nsupport from York St John University.  23 \n 24 \nAbstract 25 \nIntroduction 26 \nDiagnostic delay for endometriosis is a well-established phenomenon. Despite this, little is 27 \nknown about where in the health care system these delays occur or why they occur. Our 28 \nreview is the first attempt to synthesise and analyse this evidence.  29 \nMethods 30 \nA systematic scoping review with a pre-specified protocol was used to incorporate the global 31 \nmixed methods literature on diagnostic delay for endometriosis. Four databases (PubMed, 32 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \nNOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.\n\n2 \n \nMEDLINE, EMBASE, PsychINFO) were searched from inception to September 2023 with a 33 \nsearch strategy designed specifically for each.  34 \nResults 35 \nThe search yielded 367 studies, 22 of which met the inclusion criteria. A third of studies has 36 \nbeen published since 2020 and 65% were from high income countries. Six were qualitative 37 \nand 16 were quantitative studies. The average age of onset of endometriosis was 14 years 38 \nfor adolescents and 20 for adults. On average, the diagnostic delay reported for 39 \nendometriosis across the included studies was 6.6 years (range 1.5 to 11.3 years) but this 40 \nmasked the very wide differences reported between countries such as a 0.5-year delay in 41 \nBrazil to a 27-year delay in the UK.   42 \nDiscussion 43 \nHealth system barriers included access to private healthcare for those with limited finance, 44 \nphysical access for those using public health systems and a general lack of knowledge 45 \namongst patients and health care professionals. Women often reported feeling unheard by 46 \nhealth professionals. Considering the impact on individuals and the health system, 47 \naddressing diagnostic delay for endometriosis must remain a priority for researchers, health 48 \ncare providers and policy makers.   49 \n 50 \nWhat is already known on this topic 51 \nEndometriosis is currently difficult to diagnose. This results in delays in diagnosis which 52 \nnegatively impacts those suffering and increases the severity of pain and extent of the 53 \ndisease with increased costs to health systems.  54 \nWhat this study adds 55 \nThe scoping review methodology included studies using a range of methods. The longest 56 \naverage delay occurs in secondary care. Those seeking public health care experienced 57 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n3 \n \nlonger average delay in diagnosis compared to those seeking private health care. Improved 58 \nclinical guidelines may reduce diagnostic delay.  59 \nHow this study might affect research, practice or policy 60 \nThis is the first known review to explore diagnostic delay for endometriosis and provides an 61 \noverview of the current literature. Clearer definitions of diagnostic delay for endometriosis 62 \nare needed to aid in comparisons across countries. Improving education, tracking outcomes 63 \nthrough medical records and developing non-invasive diagnostic tools will be crucial to 64 \nimprove women’s health.  65 \n 66 \n 67 \n 68 \n 69 \n 70 \n 71 \n 72 \n 73 \n 74 \n 75 \n 76 \n 77 \n 78 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n4 \n \nIntroduction 79 \nEndometriosis is an oestrogen dependent gynaecological condition characterised by the 80 \npresence of active endometrial tissue lying outside of the uterus, typically in the pelvic region 81 \n(1).  It is a chronic, progressive inflammatory disease which affects more than 170 million 82 \nwomen worldwide (2).  Endometriosis mainly affects women of reproductive age (15-49 83 \nyears), with up to 1 in 10 believed to have t he condition, although it is estimated that as 84 \nmany as 60% of endometriosis cases remain undiagnosed (2, 3). Prevalence estimates of 85 \nendometriosis are generally poor and highly varied, ranging from 4% to 50%; however the 86 \nmost consistent estimates suggest prevalenc e ranging from 6-10% (4). Despite the 87 \nprogressive nature of endometriosis, a correct  diagnosis takes an average of 10 years and 88 \nat least 7 visits to a health prac titioner (5, 6). This lengthy del ay is reflected in the disease 89 \nburden in which gynaecological diseases are r eported as the leading cause of Disability 90 \nAdjusted Life Years (DALYs) and Years Lived with Disability (YLD) among the 15-49-year 91 \nage group (7). This is despite clear clinical diagnostic indicators including chronic pelvic pain 92 \n(CPP), dysmenorrhea (painful, heavy menstruation), dyspareunia (painful intercourse), that 93 \nare known for 82.9%  of women (1, 8). Apart from the YLD the economic impact includes 94 \nincreased costs to the individual, to health care providers, and to the wider economic 95 \ninfrastructure (9). The current ‘gold st andard’ for diagnosis is a laparoscopy, although 96 \nsurgeons may be hesitant to perform this due to the invasive nature of the procedure (8, 10). 97 \nThere is also evidence that symptoms may be dismissed as ‘normal’ by health care 98 \npractitioners (1, 11). 99 \n 100 \nThe aim of this review was to explore the delay faced by those attempting to obtain a 101 \ndiagnosis of endometriosis and appropriate treatment. 102 \n 103 \nMethods  104 \nThe study protocol was registered on the Open Science Framework OSF: 105 \n10.31219/osf.io/yzuvb 106 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n5 \n \nPatient and public involvement 107 \nWomen who have experienced diagnostic delay for endometriosis were involved in 108 \ndesigning the research. The research question was informed by their priorities, experiences 109 \nand preferences. Dissemination of this research will be facilitated through charities focussed 110 \non endometriosis.  111 \nData sources and search strategy 112 \nDevelopment of the search strategy was guided by the SPIDER framework to ensure key 113 \nconcepts were captured in searches. Four databases were searched between from inception 114 \nto September 2023. They included PubMed, MEDLINE, EMBASE and PsycINFO. No date 115 \nlimits were set on the searches. Search terms included key terms derived from search 116 \nstrings relating to ‘endometriosis’ and ‘diagnostic delay’ and were adapted for each 117 \ndatabase; For example, the search strategy for MEDLINE was: ‘Endometriosis.mp. or (exp 118 \nPelvic Pain/ or exp Chronic Pain/)) and exp Delayed Diagnosis/’. 119 \nEligibility criteria 120 \nIncluded studies were primary research in English involving the pelvic region or reproductive 121 \norgans only, that mentioned pelvic pain with a suspicion of endometriosis, and diagnostic 122 \ndelay (in the context of endometriosis). 123 \nScreening and data extraction 124 \nAll studies were screened by one reviewer (JF) with a 10 percent sample checked by a 125 \nsecond reviewer (MS) and any disagreements resolved by a third reviewer (AW/AMJ).  126 \nData were extracted on a predeveloped and piloted data extraction form and included study 127 \ncharacteristics, methods and design, and demographic characteristics of the population. 128 \nAdditionally, the most frequently reported symptoms, length of and reason for delay were 129 \nrecorded.  130 \nAnalysis 131 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n6 \n \nStudies were grouped by themes that emerged from the individual included studies (12) and 132 \ncontextualised to form a public policy perspective using the socio-ecological model (13). 133 \nResults 134 \nSelection of studies 135 \nThe searches yielded 367 studies following deduplication. Title and abstract screening, and 136 \nfull-text screening resulted in 23 studies that met the inclusion criteria (see figure 1). 137 \n[Figure 1] 138 \n 139 \nNo formal quality appraisal was undertaken in line with methodological guidance for scoping 140 \nreviews (14). 141 \n 142 \nStudy characteristics  143 \nTable 1 provides an overview of the included studies and highlights the diversity of methods 144 \nused.  Six were qualitative and 16 were quantitative studies. Almost a third of studies (8/22) 145 \nwere published relatively recently (since 2020) from a range of countries. Fifteen were 146 \nconducted in high income countries including the UK (15, 16),  US (17-21), Netherlands (22, 147 \n23),  Norway (24, 25), Canada (26), Australia (27), New Zealand (28), and Italy (29). Three 148 \nwere conducted in middle income countries; Brazil (30, 31) and Iran (32) and four were 149 \nconducted in multiple countries (33-36). The average age of participants across the studies 150 \nwas 32.7 but the age range of participants was between 12 and 74 years old. 151 \nAge of onset of endometriosis 152 \nThe mean age at onset of endometriosis symptoms was 14.1 years old for adolescents 153 \n(range 13-15.3 years), and 20.4 years old for adults (range 20-23.2 years). The average age 154 \nat diagnosis was 16 for adolescents and 28.8 for adults (range 22-32). Average age of first 155 \nGP visit was 14 for adolescents and 25.8 years for adults (range 20-32.6). 156 \n[Table 1] 157 \n 158 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n7 \n \nDiagnostic delay  159 \nThe definition of diagnostic delay was consistent across studies and was defined as the time 160 \nbetween symptom onset and diagnosis. The average diagnostic delay was 6.6 years with an  161 \naverage of 1.5 years in Australia (27) and 11.3 years in the US (18). However, there was a 162 \nwide range between the shortest and longest delay reported. The shortest delay was 0.5 163 \nyears in Brazil (30), and the longest delay was 27 years in the UK (15). Though the range 164 \nwas wider than previously reported by other studies i.e. 3.3 - 11.7 years, the average 165 \ndiagnostic delay was consistent with their finding of 6.7 years (35).  Some studies reported 166 \nspecific points at which delays occurred, these were from symptom onset to primary care 167 \nconsultation (15, 17-19, 21-23, 25, 26, 28, 33), referral for gynaecology consultation (15, 16, 168 \n22, 23, 33), and gynaecology referral to diagnosis (15, 16, 22, 23, 33). Mean delays through 169 \nthis pathway reported across the studies were 2.0 years, 2.5 years, and 2.8 years 170 \nrespectively. Time from primary care presentation to diagnosis was reported by some 171 \nstudies without mention of transition to secondary care (16, 19, 21, 25, 26). The average 172 \ndiagnostic delay between primary care presentation and diagnosis was 2.9 years (see figure 173 \n2). 174 \n[Figure 2] 175 \n 176 \nReasons for delay 177 \nMost studies focussed on the patients’ perspective, two studies focussed on the health care 178 \nprovider (HCP) perspective, and one included both perspectives. There were 6 main themes 179 \nthat emerged.  A summary of these can be seen in table 2. 180 \n[Table 2] 181 \n 182 \nAccess to care differed depending on the specific health system in place. While financial 183 \nbarriers were more prominent for those seeking private healthcare, physical access to care 184 \nwas more frequently noted for those seeking public healthcare services. Only one study 185 \ncompared wait times between those seeking public healthcare and insurance or self-funded 186 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n8 \n \nhealthcare (35). They found that wait times for endometriosis care were significantly longer 187 \nfor those seeking public rather than private healthcare (8.3 years vs. 5.5 years). 188 \nBoth HCPs and patients shared similar views on the reasons for diagnostic delay although 189 \nthey expressed the delays differently. Where HCP thought frequently presenting patients 190 \nwere somatising, patients stated they presented frequently because they felt unheard by 191 \nHCPs. This was reflected by the number of doctors seen, which averaged 2.0 for 192 \nadolescents (19) and 4.1 for adults (range 2.5-7) (19, 26, 28, 33, 35) and the number of 193 \ntimes symptoms were discussed before diagnosis, with more than a quarter of women 194 \nsaying they discussed symptoms more than 20 times (34). Interestingly, none of the studies 195 \nevaluated the number of consultations prior to referral, nor the effect of diagnostic delay 196 \nqualitatively or quantitatively based on the type (doctor, nurse, etc.) or gender of the HCP. 197 \nThe emerging themes identified increased diagnostic delay at each point along the 198 \ndiagnostic pathway, from symptom onset to diagnosis. This resulted in prolonging diagnosis 199 \nwhich led to increases in both the severity of pain and the extent of disease (20, 21) (see 200 \nfigure 3). Both patients and HCPs appeared to demonstrate an overall lack of understanding 201 \nand education about endometriosis. 202 \n[Figure 3] 203 \n 204 \nDiagnostic delay: evidence of delays being addressed  205 \nOverall, four studies reported interventions implemented to tackle diagnostic delay. Of these, 206 \ntwo studies reported reduced time to diagnosis following the introduction of clinical 207 \nguidelines (27, 28)  and one study that found diagnostic delays were reduced by the 208 \nintroduction of specialist endometriosis centres in the US, but not in the UK (16). Only one 209 \nstudy quantified the reduction in delay (8.4 years), while the others reported a ‘downward 210 \ntrend’ in diagnostic delays (16, 27, 28). Becoming a member of an endometriosis society had 211 \nno effect on diagnostic delay (35). 212 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n9 \n \nThe discrepancy in effectiveness of the introducti on of specialist endometriosis centres may 213 \nbe due to differences in health care systems including access to care, service use, service 214 \ncost, referral pathways and diagnostic guidelines.  215 \n 216 \nA range of interventions to reduce diagnostic delay for endometriosis were suggested 217 \nincluding education and awareness campaigns, collaboration, and multidisciplinary working 218 \nbetween HCPs, promoting health-seeking behaviour for patients, the use of screening tools, 219 \nincreased research into endometriosis, improving access to medical records, clinical 220 \nguidelines written in the native language, the use of reliable diagnostic indicators and early 221 \nintervention.   222 \n[Figure 4] 223 \nThe interventions suggested span the entirety of the socio-ecological framework (see figure 224 \n5). This multi-level approach to intervention allows for the introduction of all encompassing, 225 \nyet targeted and effective interventions tailored according to individual factors and 226 \nbehaviours (13) and the wider health care system. Using this framework for diagnostic delay 227 \nin endometriosis is useful to visualise the complexity involved whilst providing a range of 228 \noptions for intervention.  229 \n[Figure 5] 230 \nThe breadth of interventions identified was aide d by the diversity of participants included in 231 \nthe studies and was enhanced by the inclusion of views from a range of HCPs (17, 24, 32). 232 \n 233 \nDiscussion 234 \nDiagnostic delay associated with endometriosis is a well-established phenomenon. Prior to 235 \nour review it was not clear where in the health care system these delays occurred or why 236 \nthey occurred. Our review is the first attempt to synthesise and analyse this evidence. On 237 \naverage, the diagnostic delay for endometriosis was 6.6 years across the studies and 238 \nranged from 1.5 years to 11.3 years. Delays were identified at all stages from symptom 239 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n10 \n \nonset to receiving a diagnosis. The longest average delay was the time from gynaecology 240 \nreferral to diagnosis (2.8 years), followed by primary care presentation to diagnosis (2.5 241 \nyears), and finally, from symptom onset to primary care presentation (2.0 years). Only 2 242 \nstudies used a CPP comparator group, while 2 used healthy controls, no other studies used 243 \na comparator or control, and none provided information on women with negative findings at 244 \nlaparoscopy. 245 \n 246 \nWe acknowledge the limitation of the scoping review methodology. The exclusion criteria 247 \nmeant that some papers were not included, such as those focussing on specific biomarkers. 248 \nAll included studies relied on patients recalli ng the start of their symptoms rather than 249 \ntracking patients throughout their diagnostic journey  or using medical records for verification 250 \nwhich could reduce recall bias. The strength of our study was a clear focus following a pre-251 \npublished protocol, including a wide range of papers from all over the world and locating the 252 \nproblem within the socio-ecological framework.  253 \n 254 \nAn area in critical need of further research is closer tracking of patients throughout their 255 \ndiagnostic journey. This should include the time from presentation to diagnosis, including 256 \ncases where patients have met all criteria to be considered for surgery but do not have 257 \nendometriosis, what their differential diagnoses are and what the differences are between 258 \nwomen with a positive and negative laparoscopy. This may be improved by using reporting 259 \nendometriosis as a differential diagnosis earlier along the diagnostic journey, and by 260 \nensuring primary and secondary care are better connected so the diagnostic journey can be 261 \nproperly followed. Additionally, it may be useful to have the details of the HCP available and 262 \ntheir role e.g. primary care practitioner, gynaecologist, and their gender, age, and length of 263 \nservice, all of which may affect diagnostic delay. 264 \n 265 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n11 \n \nThe definition and calculation of diagnostic delay is also an area that requires urgent 266 \nattention. Rather than studies describing the time from symptom onset to diagnosis, the 267 \ncurrent definition of diagnostic delay used across studies, it would be more beneficial to 268 \ndetermine excess delay. This could provide regional and national estimates of the true 269 \ndiagnostic delay or excess delay based on regional and national average wait times for 270 \nprimary care appointments, referral to gynaecology, and for surgery. This measure could 271 \nallow direct comparisons of care and delays between public and private provision of services 272 \nfor endometriosis care.  273 \n 274 \nSecondly, the length of delay matters in terms of cost and severity for women and the wider 275 \nhealth system. Accurate calculation of diagnostic delay for endometriosis may be the first 276 \nstep to improving guidelines, diagnostic measures, and diagnosis more broadly. Additionally, 277 \nit is important to establish and address barriers to diagnosis. More investigation is needed on 278 \nthe effect of diagnostic delay to determine the cost-benefit of reducing diagnostic delay (37).  279 \nThough there remains much to be done, the results of this study can provide a platform for 280 \nfurther future research to prevent the unnecessary and extended suffering resulting from 281 \ndiagnostic delays of endometriosis. The socio-ecological framework can be used to assess 282 \nwhere improved policies may be effective, how widespread the effects might be and to 283 \nprovide a benchmark for their perceived benefit (financial and otherwise). Further research 284 \nstudies would benefit from utilising medical records to track the number of consultations, 285 \nrange of HCPs, and time elapsed from initial referral to a final diagnosis and treatment. Our 286 \nreview provides a starting point for others to improve our understanding of where changes 287 \nneed to be made to reduce the delay in diagnosis of endometriosis. 288 \nReferences 289 \n1. Olšarová K, Mishra GD. Early life factors for endometriosis: a systematic review. 290 \nHum Reprod Update. 2020;26(3):412-22. 291 \nAll rights reserved. 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Armour M, Sinclair J, Ng CHM, Hyman MS, Lawson K, Smith CA, et al. 354 \nEndometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis 355 \nis decreasing: an Australian survey. Sci Rep. 2020;10(1):16253. 356 \n28. Tewhaiti-Smith J, Semprini A, Bush D, Anderson A, Eathorne A, Johnson N, et al. An 357 \nAotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and 358 \nchronic pelvic pain. Sci Rep. 2022;12(1):4425. 359 \n29. Lukic A, Di Properzio M, De Carlo S, Nobili F, Schimberni M, Bianchi P, et al. Quality 360 \nof sex life in endometriosis patients with deep dyspareunia before and after laparoscopic 361 \ntreatment. Arch Gynecol Obstet. 2016;293(3):583-90. 362 \n30. Andres MeP, Podgaec S, Carreiro KB, Baracat EC. Endometriosis is an important 363 \ncause of pelvic pain in adolescence. Rev Assoc Med Bras (1992). 2014;60(6):560-4. 364 \n31. Santos TM, Pereira AM, Lopes RG, Depes DeB. Lag time between onset of 365 \nsymptoms and diagnosis of endometriosis. Einstein (Sao Paulo). 2012;10(1):39-43. 366 \n32. Riazi H, Tehranian N, Ziaei S, Mohammadi E, Hajizadeh E, Montazeri A. Patients' 367 \nand physicians' descriptions of occurrence and diagnosis of endometriosis: a qualitative 368 \nstudy from Iran. BMC Womens Health. 2014;14:103. 369 \n33. Hudelist G, Fritzer N, Thomas A, Niehue s C, Oppelt P, Haas D, et al. Diagnostic 370 \ndelay for endometriosis in Austria and Germany: causes and possible consequences. Hum 371 \nReprod. 2012;27(12):3412-6. 372 \n34. Lamvu G, Antunez-Flores O, Orady M, Schneider B. Path to diagnosis and women’s 373 \nperspectives on 374 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n15 \n \nthe impact of endometriosis pain. Journal of Endometriosis and Pelvic Pain 375 \nDisorders. 2020;12(1):16-25. 376 \n35. Nnoaham KE, Hummelshoj L, Webster P, d'Hooghe T, de Cicco Nardone F, de Cicco 377 \nNardone C, et al. Impact of endometriosis on quality of life and work productivity: a 378 \nmulticenter study across ten countries. Fertil Steril. 2011;96(2):366-73.e8. 379 \n36. Van Niekerk L, Johnstone L, Matthewson M. Predictors of self-compassion in 380 \nendometriosis: the role of psychological health and endometriosis symptom burden. Hum 381 \nReprod. 2022;37(2):264-73. 382 \n37. Cromeens MG, Carey ET, Robinson WR, Knafl K, Thoyre S. Timing, delays and 383 \npathways to diagnosis of endometriosis: a scoping review protocol. BMJ Open. 384 \n2021;11(6):e049390. 385 \n 386 \n 387 \nFig ur e  1 PRISMA flow diagr am  388 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n16 \n \n 389 \n 390 \n 391 \n 392 \n 393 \n 394 \n 395 \n 396 \n 397 \n  398 \n 399 \n 400 \n 401 \n 402 \n 403 \n 404 \n 405 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n17 \n \nTable 1: Table of included studies 406 \nFirst author, \nyear, country  \nStudy design  Participants and \nmethods\n \nMain finding(s) \nQuantitative    \nAndres, 2014, \nBrazil \nRetrospective \nstudy \n \n \n \n21 patients \n(aged 13-20) \nwith \nhistologically \nconfirmed \nendometriosis \nafter \nundergoing \nsurgery.\n \nNeed for increased \nawareness of adolescent \nonset of endometriosis. \nCurrent imaging techniques \nare inadequate. \nGynaecologists fail to \nrecognise symptoms.\n \nArmour, 2020, \nAustralia \n \nCross-\nsectional \nstudy\n \n \n \n409 participants \n(aged 18-45), \n340 with \nendometriosis, \n69 without. \nRecruited via \nsurvey link.\n \nESHRE guidelines reduced \ndiagnostic delay from 9.9 \nyears before 2005 to 1.5 \nyears as of 2013 onwards. \nYear medical attention is \nsought, number of doctors \nseen and delayed health \nseeking all increase \ndiagnostic delay.\n \nDiVasta, 2018, \nUnited States \nCross-\nsectional \nlongitudinal \ncohort study\n \n \n670 participants \n(aged 12-49), \n402 with self-\nreported \nendometriosis, \nNeed to understand changing \nsymptom patterns and \nsymptom base more – \nparticularly how this may \ndiffer between an adult and \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n18 \n \n 268 controls. \nRecruited from \n2 tertiary \ncentres. \nadolescent population. Acyclic \npain appears to increase with \nage – potentially due to \nincreased severity of \nendometriosis at surgery. \nDmowski, \n1997, United \nStates\n \nRetrospective \nstudy \n \n \n693 patients \n(aged 15-40), \n377 with CPP \nsymptoms, 336 \ninfertility +/- \npain. Evaluated \nat the Institute \nfor the Study \nand Treatment \nof \nEndometriosis.\n \nDiagnostic delays were found \nto be longer in women who \nwere symptomatic earlier in \nlife. Longer delays led to more \nadvanced disease at \nlaparoscopy. These findings \nwere only significant in the \npain group. Diagnostic delay \nsteadily decreased between \n1979 and 1995. Delays were \nlonger in the pelvic pain group \nthan the infertility group.\n \nGhai, 2020, \nUnited \nKingdom\n \nRetrospective \ncross-\nsectional \nstudy \n \n \n101 women \nwith surgically \nconfirmed \nendometriosis \nrecruited via \nwritten postal \nquestionnaire.\n \nWomen often have their pain \nnormalised and do not feel \ntheir pain is taken seriously. \nMisdiagnosis, menstrual \ncramps during adolescence, \nearlier symptom onset and \ndelays between presenting \nwith symptoms and onward \nreferral all increased \ndiagnostic delays. Shorter \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n19 \n \ndelays were found when \nwomen changed to a more \nunderstanding gynaecologist. \nHudelist, 2012 \nAustria and \nGermany \nCross-\nsectional \nstudy \n \n \n171 patients \n(aged >18) with \nhistologically \nconfirmed \nendometriosis \nrecruited from \ntertiary referral \ncentres for \ndiagnosis and \ntreatment of \nendometriosis.\n \nIncreasing number of \nmisdiagnoses, patient \nimpression of not been taken \nseriously, normalisation of \nsymptoms, women with \ncramps during adolescence, \nand whose mothers viewed \nmenstruation as a negative \nevent all experienced \nincreased diagnostic delays. \nMedication use, extent of \ndisease and main \nsymptomatic complaint were \nall non-significant factors.\n \nHusby, 2003, \nNorway\n \nCross-\nsectional \nstudy\n \n \n \n261 patients \nwith pain and \nendometriosis, \n223 members \nof the \nNorwegian \nEndometriosis \nAssociation, 38 \nnon-members.\n \nThere were no statistically \nsignificant differences in the \nmean diagnostic delay \nbetween 1978-2001. Delays \ndid not differ between those \nwith pain only and pain and \ninfertility, additionally, there \nwas no difference in \ndiagnostic delay between \nmembers and non-members. \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n20 \n \nMost of the delays were from \nseeing a GP to diagnosis. \nLamvu, 2020, \nUnited States, \nAustralia, \nCanada, \nIreland, New \nZealand, \nSouth Africa, \nand the United \nKingdom\n \nCross-\nsectional \nstudy \n \n \n451 \nrespondents \n(aged 19-60) \nwith or without \nendometriosis. \nRecruited \nthrough ‘My \nEndometriosis \nTeam’. \nRespondents described \ndiscussing their symptoms \nmore than 20 times and were \ncommonly misdiagnosed with \nboth mental and physical \nconditions. About half of \nrespondents waited over 6 \nyears for a diagnosis while \nalmost a quarter waited 11 or \nmore years. Longer delay was \nassociated with more pelvic \nsymptoms. Many women felt \ndoctors did not listen and that \ntheir recommendations were \ninconsistent with what they \nwanted.\n \nLukic, 2015, \nItaly\n \nCohort study \n \n \n67 patients with \ndeep \ndyspareunia \ndiagnosed with \npelvic \nendometriosis \nattending an \nendometriosis \nunit.\n \nWomen often suffer from \npathology for a long time \nbefore presenting to health \nservices. Both signs and \nsymptoms of endometriosis \nneed to be better recognised \nor women need to be clearer \nin describing signs and \nsymptoms to allow diagnosis. \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n21 \n \nRoughly two-thirds of women \ndon’t consult their GP for \nsexual dysfunction. \nNnoaham, \n2011\n \n(Belgium, \nBrazil, China, \nIreland, Italy, \nNigeria, United \nKingdom, \nUnited States \nand Spain)\n \nMulticentre \ncross-\nsectional \nstudy with \nprospective \nrecruitment \n \n \n \n1,418 \npremenopausal \nwomen (aged \n18-45) without \nprevious \nsurgical \ndiagnosis of \nendometriosis. \n745 with \nendometriosis, \n587 \nsymptomatic, \n86 sterilised. \nRecruited in \nhospital before \nsurgery.\n \nDelays were increased when \nstate funded care was sought \nwhen compared to self-\nfunded care or through \ninsurance. Patients with \nlonger delays had more pelvic \nsymptoms and a higher Body \nMass Index (BMI), even when \nadjusting for potential \nconfounders. Most of the \ndelay was due to length of \ntime between referral from \nprimary care to a \ngynaecologist. Women with \nendometriosis had a longer \ndelay than symptomatic \ncontrols without \nendometriosis at surgery. \nDiagnostic delays ranged \nfrom 3.3 years to 10.7 years.\n \nSantos, 2012, \nBrazil \nRetrospective \nanalytical \nstudy\n \n \n262 women \n(aged 17-49) \nwith surgically \nconfirmed \nDiagnostic delay differed \nbetween different age \ncategories; however, the \ndifference was found to be \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n22 \n \n endometriosis. \nRecruited \nthrough an \noutpatient clinic \nfor \nendometriosis \nand CPP. \nnon-significant. Women with \ndysmenorrhea and deep \ndyspareunia had a longer \ndelay, which those with \ndyspareunia (not deep) and \nacyclic pain had a shorter \ndelay. Women experiencing \ninfertility experienced a longer \ndelay than their fertile \ncounterparts. Site and \nseverity of disease were not \nsignificant factors.\n \nSingh, 2020, \nCanada\n \nCross-\nsectional \nsurvey\n \n \n \n2004 women \n(aged 18-49) \nwere recruited \nvia email using \n3 independent \nsurvey \nsampling \npanels.\n \nDelays in health seeking were \nlonger than physician-related \ndelays. On average women \nsaw 3 different physicians \nbefore receiving a diagnosis. \nThe odds of receiving a \ndiagnosis of endometriosis \nwere highest when women \nexperienced infertility, cyclic \npelvic pain or cramping, and \npelvic pressure. \n \nSoliman, 2017, \nUnited States \nCross-\nsectional \nstudy\n \n \n683 \nrespondents \n(aged 18-29) \nrecruited from 3 \nYounger age at symptom \nonset and white ethnicity were \nassociated with a longer \ndiagnostic delay. Patients with \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n23 \n \n market \nresearch \npanels. \nconstipation, bloating or \ndiarrhoea were diagnosed \nsooner than those with pain \nduring sex. Delays were also \nshorter among women having \na diagnostic procedure, \nwomen seen by a \ngynaecologist and women \ndiagnosed via non-surgical \nmethods.\n \nStaal, 2016, \nNetherlands\n \nRetrospective \ncross-\nsectional \nstudy\n \n \n \n47 patients \n(aged 14-29) \ndiagnosed with \nendometriosis \nby surgery or \nMRI. \nDiagnostic delay was shorter \nfor patients who consulted \ntheir GP due to subfertility \nrather than pain. A longer \ndelay from presenting to a GP \nto referral was experienced by \npatients who were a young \nage when they developed \nsymptoms, misdiagnosed or \ntheir symptoms were \nnormalised – the same delays \nwere not experienced \nbetween referral to a \ngynaecologist and diagnosis.\n \nTewhaiti-Smith \n2022, New \nZealand\n \nCross-\nsectional \nstudy\n \n800 \nrespondents \n(aged 18-74), \nDiagnostic delay was longer \nin patients with endometriosis \nthan those experiencing CPP. \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n24 \n \n \n \n620 with \nendometriosis, \n180 with CPP. \nRecruited using \nsocial media, \nflyers, and \nthrough \ntargeted \ndissemination.\n \nOn average women saw 4.8 \ndoctors before they were \ndiagnosed with \nendometriosis. Year of first \ndoctors visit was negatively \ncorrelated with the number of \ndoctors consulted suggesting \nhealth-seeking delays are \nreducing over time. Overall \ndiagnostic delay was reduced \nby 6.5 years by the \nintroduction of guidelines.\n \nVan Niekerk, \n2022, \nAustralia, \nOceania, \nUnited \nKingdom and \nNorth America \n \nCross-\nsectional \nstudy \n \n318 women (23 \nof whom with \nsymptoms of \nperimenopause, \n35 in medical \nmenopause and \n7 in surgical \nmenopause). \nRecruited via \nonline \nadvertising on \nsocial media.\n \nLonger diagnostic delays, \nnumber of endometriosis-\nrelated symptoms, \ndepression, anxiety, pain after \nsexual intercourse and during \nurination were all negative \npredictors of self-compassion. \nWomen with longer diagnostic \ndelays were found to have \nhigher levels of \nendometriosis-related distress \nare likely to report lower \nlevels of self-compassion and \nwould benefit from early \nengagement in psychological \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n25 \n \ninterventions. \nQualitative    \nAs-Sanie, \n2019, United \nStates\n \nQualitative \nstudy – \ninteractive \ndiscussion\n \n \n \nInterdisciplinary \ngroup of expert \nresearchers, \nclinicians, and \npatients put \ntogether the \nThe Society for \nWomen’s \nHealth \nResearch.\n \nIdentified themes impacting \ndiagnostic delay through \nguided interactive discussion. \nThese included diagnostics, \nbarriers to diagnosis, the \nfuture of diagnostics, \ntreatment, barriers to \ntreatment and the future of \ntreatment – with several \nsubthemes including stigma \nand understanding.\n \nBallard, 2006, \nUnited \nKingdom \nQualitative, \ninterview-\nbased study \n \n \n32 women \n(aged 16-47) \nattending a \npelvic pain \nclinic. 28 \ndiagnosed with \nendometriosis.\n \nDelays occur at every stage \nof the diagnostic pathway. \nDelays occur at both the \npatient-level and medical-\nlevel, with normalisation being \na common factor. Others \ninclude stigma, non-specific \ntesting, and improper use of \ntreatments.\n \nDiBenedetti, \n2018, United \nStates\n \nQualitative \ncross-\nsectional \nstudy with an \ninterview \n16 women \n(aged 24-48), \n11 with \nendometriosis \nand 5 healthy \nA painful periods screening \ntool was developed to aid in \nthe recognition of pathological \nsymptoms of endometriosis. \nThe tool was found have face \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n26 \n \nelement \n \n \ncontrols. \nRecruited via 2 \nqualitative \nresearch \nfacilities. \nvalidity and content validity, \nclearly and concisely able to \nassess core symptoms and \ndistinguish between normal \nand pathological symptoms. \nFernandes \n2020, Norway\n \nQualitative \ninterview-\nbased study\n \n \n \n13 doctors- 8 \ngynaecologists \nand 5 General \nPractitioners \n(GP’s) identified \nvia google \nsearch.\n \nPatients attending clinic often \nfeel embarrassed and \ndisbelieved regarding \nsymptoms. Doctors do not like \nto take responsibility for \ndiagnosis due to not being \nspecialised in women’s health \nissues. Diagnosis is often \ndelayed due to multiple \nmisdiagnoses.\n \nRiazi, 2014, \nIran \nQualitative \ninterview-\nbased study\n \n \n \n12 \nendometriosis \npatients (aged \n22-37) and 6 \ngynaecologists \nDyspareunia was noted as \none of the most important \nsymptoms of the disease. \nWomen’s recognition of this \nsymptom is often delayed due \nto delayed marriage (and so \ndelayed intercourse). Beliefs \naround dysmenorrhoea being \nnormal and common during \nvirginity also delay diagnosis. \nFrom a medical viewpoint, \nunreliability of diagnostic \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n27 \n \nmarkers, misdiagnosis and \nmismanagement all increase \ndiagnostic delay. \nVan der \nZanden, 2022, \nNetherlands\n \nQualitative \nfocus group-\nbased study \n \n \n23 women \n(aged 29-45) \nplaced in 6 \nfocus groups. \nRecruited by \nsocial media, \nthrough a \npatient interest \ngroup and \nthrough a \ncentre of \nexpertise in \nendometriosis\n \nHealth-seeking behaviour is \noften influenced by peers, \nnormalisation leads to delays. \nNon-discriminatory tests, \nbeing referred to the wrong \nspecialist and given pain \nmedication without proper \nindication for use were all \nattributed to diagnostic \ndelays. Referral was faster in \nwomen with menstruation \nspecific complaints. Not all \ndoctors have equal \nknowledge and some women \nreceived incomplete \nexamination.\n \n 407 \n 408 \n 409 \n 410 \n 411 \n 412 \n 413 \n 414 \n 415 \n 416 \n 417 \n 418 \n 419 \nFig ur e  2: Sc hematic r ep r esentation of gl obal ave r a ge diag nos tic  delay 420 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n28 \n \n 421 \n 422 \n 423 \n 424 \n 425 \n 426 \n 427 \n 428 \n 429 \n 430 \n 431 \n 432 \n 433 \n 434 \n 435 \n 436 \n 437 \n 438 \n 439 \n 440 \n 441 \n 442 \n 443 \n 444 \n 445 \n 446 \n 447 \n 448 \n 449 \n 450 \n 451 \n 452 \n 453 \n 454 \n 455 \nTable 2: The main themes and sub-themes relating to diagnostic delay  456 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n29 \n \n Main theme Contributing factors (sub-themes) \n1 Access to healthcare Physical access to care, financial barriers, stigma, \nembarrassment, not being aware of endometriosis, religious \nbeliefs, and normalisation of symptoms.\n \n2 Knowledge limitations Poor recognition of symptoms (patients and HCP), HCP \nthinking endometriosis is a ‘rare’ disease, inability to define \nbetween normal and pathological symptoms (patients and \nHCP), lack of awareness and lack of training and evidence \navailable to HCP.\n \n3 Misdiagnosis Differential presentation of symptoms between women, \natypical symptoms, comorbidities, communication challenges \nbetween different HCP, lack of specificity of testing, lack of \ndefinitive diagnostic testing, and use of non-definitive tests.\n \n4 Stigmatisation  Stigma, normalisation, dismissal, patient unable to properly \nverbalise pain and/or symptoms causing communication \nchallenges between patient and HCP, and lack of patient \nassertiveness.\n \n5 Method of diagnosis Hesitation to refer for more invasive, definitive tests, age, HCP \nuncomfortable with requirement to perform physical exam \n(particularly adolescents), and perceived need for surgical \nover clinical diagnosis in some health systems.\n \n6 Lack of guidelines No screening tools available, inconsistency in available \nPROMs and guidelines, poor interdisciplinary handling of \npatients, and need for involvement of multiple HCP.\n \n 457 \n 458 \nFigure 3: Pathways to diagnostic delay  459 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n30 \n \n 460 \n 461 \n 462 \n 463 \n 464 \n 465 \n 466 \n 467 \n 468 \n 469 \n 470 \n 471 \n 472 \n 473 \nFigure 4: Thematic map of interactions between themes and subthemes  474 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n31 \n 475 \n 476 \n 477 \n 478 \n 479 \n 480 \n 481 \n 482 \n 483 \n 484 \nFigure 4: The socio-ecological model of endometriosis  485 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint \n\n32 \n \n 486 \n 487 \n 488 \n 489 \n 490 \n 491 \n 492 \nAll rights reserved. No reuse allowed without permission. \n(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. \nThe copyright holder for this preprintthis version posted January 9, 2024. ; https://doi.org/10.1101/2024.01.08.24300988doi: medRxiv preprint","source_license":"CC0","license_restricted":false}