{"paper_id":"794cc94b-d236-457d-87a5-0b3613354514","body_text":"TITLE:\nCOVID-19 Compromises in the Medical Practice and the Consequential Effect\non Endometriosis Patients\nRUNNING TITLE:\nCOVID-19 impact on Endometriosis healthcare\nAUTHORS:\nShaked Ashkenazi*. Pomeranian Medical University, Szczecin, Poland. 70-204.\nOle Linvåg Huseby. Pomeranian Medical University, Szczecin, Poland. 70-204,\nGard Kroken. Norwegian Joint Registry. Møllendalsbakken,\nBergen, Norway. 7 5021.\nAdrian Soto-Mota MD, PhD. Metabolic Diseases Research Unit of The National\nInstitute of Medical Sciences and Nutrition Salvador Zubirán. Mexico City,\n14610.\nMarius Pents. Pomeranian Medical University, Szczecin, Poland. 70-204.\nAlessandra Loschiavo. Università degli Studi della Campania Luigi Vanvitelli,\nCaserta CE, Italia. 81100.\nRoksana Lewandowska, Pomeranian Medical University, Szczecin, Poland.\nGrace Tran. University of Toronto, Toronto, Canada. 70-204.\nDr. Sebastian Kwiatkowski. Pomeranian Medical University, Szczecin, Poland.\n70-204.\nCORRESPONDING AUTHOR:\nShaked Ashkenazi\nORCID: 0000-0002-0143-3110\nPomeranian Medical University\nshakedi11011@gmail.com\n+47 920 25 297\nRybacka 1, Szczecin, Poland. 70-204.\nPage 1 of 33\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 (which was not certified by peer review)\nThe copyright holder for this preprint this version posted May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \nNOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.\n\nABSTRACT\nBackground and purpose\nIn response to the ongoing coronavirus disease 2019 (COVID-19) pandemic,\nself-isolation practices aimed to curb the spread of COVID-19 have severely\ncomplicated the medical management of patients suffering from endometriosis and\ntheir physical and mental well- being. Endometriosis, the main cause for chronic\npelvic pain (CPP), is a highly prevalent disease characterized by the presence of\nendometrial tissue in locations outside the uterine cavity that affects up to 10% of\nwomen in their reproductive age. This study aimed to explore the effects of the\nglobal COVID-19 pandemic on patients suffering from endometriosis across multiple\ncountries, and to investigate the different approaches to the medical management of\nthese patients based on their self- reported experiences.\nMethods\nA cross-sectional survey, partially based on validated quality of life questionnaires for\nendometriosis patients, was initially created in English, which was then reviewed by\nexperts. Through the process of assessing face and content validity, the\nquestionnaire was then translated to fifteen different languages following the WHO\nrecommendations for medical translation. After evaluation, the questionnaire was\nconverted into a web form and distributed across different platforms. An analysis of\n2964 responses of participants from 59 countries suffering from self-reported\nendometriosis was then conducted.\nPage 2\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nResults\nThe data shows an association between COVID-19 imposed compromises with the\nreported worsening of the mental state of the participants, as well as with the\naggravation of their symptoms. For the 1174 participants who had their medical\nappointments cancelled, 43.7% (n=513) reported that their symptoms had been\naggravated, and 49.3% (n=579) reported that their mental state had worsened. In\ncomparison, of the 1180 participants who kept their appointments, only 29.4%\n(n=347) stated that their symptoms had been aggravated, and 27.5% (n=325) stated\ntheir mental health had worsened. 610 participants did not have medical\nappointments scheduled, and these participants follow a similar pattern as the\nparticipants who kept their appointments, with 29.0% (n=177) reporting aggravation\nof symptoms and 28.2% (n=172) reporting that their mental state had worsened.\nConclusions\nThese findings suggest that COVID-19 pandemic has had a clinically significant\nnegative effect on the mental and physical well-being of participants suffering from\nendometriosis based on their self-reported experiences. Thus, they show the\nimportance of further assessment and reevaluation of the current and future\nmanagement of this condition in medical practices worldwide.\nKeywords\nEndometriosis, COVID-19, questionnaire, Quality of life, Mental health, Physical\nhealth\nPage 3\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nBACKGROUND\nExisting literature demonstrates that the quality of life of women suffering from\nendometriosis was impaired in a multitude of ways, even before the COVID-19\npandemic (Moradi et al., 2014; Arion et al., 2020). These include but are not limited\nto reduced work productivity (de Graaff et al., 2013), as well as negative effects on\nrelationships, education, and general well-being (Soliman et al., 2017; van Poll et al.,\n2020). Although numerous studies on quality of life of patients suffering from\nendometriosis have been undertaken, many of them have a relatively small sample\nsize (de Graaff et al., 2013; González-Echevarría et al., 2019; Corte et al., 2020).\nThe rapid spread of coronavirus disease 2019 (COVID-19) around the globe has\ntriggered dramatic and often transformational effects on routine health care practices\n(Birkmeyer et al., 2020). COVID-19-related policies and recommendations have\nfurther reduced the availability of caregivers and compromised healthcare for\npatients suffering from a variety of conditions (Wallis et al., 2020). In particular, the\nObstetrics and Gynecology practice has been compromised across multiple\ncountries (“Quality of life and quality of society during COVID-19 | Eurofound,” n.d.).\nMany medical centers have temporarily ceased offering surgical management for\nendometriosis, which is a crucial part of the management of the condition (Parasar et\nal., 2017), and appointments for outpatient settings are currently being postponed or\ncancelled (OECD/European Union, 2020). These factors negatively impact the\nstandard of care for these patients.\nPage 4\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nAdditionally, the International Society of Ultrasound in Obstetrics and Gynecology\nhas recommended postponing ultrasound evaluation of non-acute pelvic pain\n(Bourne et al., 2020).\nFurthermore, endometriosis patients have reported their concerns with seeking\nmedical help out of fear of getting infected with SARS-CoV-2 in medical centers\n(Leonardi et al., 2020a). Consequently, the quality of life of endometriosis patients\nhas been drastically impaired by pain, subfertility, frustration about disease\nrecurrence, and uncertainty regarding the therapeutic options available to them\n(Ammar et al., 2020; Pfefferbaum and North, 2020). These restrictions were reported\nto put endometriosis patients at risk of negative psychological effects additional to\nthose inflicted by mandated self-isolation (Gordon and Balsom, 2020).\nThis study aimed to explore the effect of the global coronavirus disease 2019\npandemic on patients suffering from endometriosis across multiple countries, and to\ninvestigate the different approaches to the medical management of these patients\nbased on their self-reported experiences.\nPage 5\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nMETHODS\nThe methodological design of this study involved two phases: phase 1 was\nqualitative, and phase 2 involved a cross-sectional survey.\nA computerized search of PMC- US National Library of Medicine, BMC Women\nHealth, and Health Affairs resources was performed to identify registered articles\nabout endometriosis and Obstetrics and Gynecology management published before\nand during the current global pandemic, as well as registered articles regarding\nCOVID-19 and the healthcare system management. The search was conducted\nusing the following terms: “Endometriosis and quality of life”; endometriosis and\nCOVID-19”; and “Healthcare and COVID-19”.\nThe literature review included comparative studies, qualitative studies, clinical trials,\ncontrolled and randomized controlled trials, and multicenter studies. Several articles\nwere selected on the basis of inclusion criteria and cross-references checked. Upon\nfinalization of the initial English survey, translations of the survey to fifteen languages\nwere initiated, including: Arabic, Farsi, Finnish, French, German, Greek, Hebrew,\nItalian, Norwegian, Polish, Portuguese, Russian, Spanish, Swedish and Turkish.\nTranslations were aimed at the conceptual equivalent of relevant phrases and words,\nas recommended by the World Health Organization criteria (World Health\nOrganization, 2017), yet avoided “word- for- word” or literal translation. It aimed for\nall 3 phases of forward translation, expert panel, and back translation for every\nlanguage.\nPage 6\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nQuestionnaire structure\nThe questionnaire comprised four distinct sections. The first section collected basic\ninformation about the respondents, including their age, nationality, and country of\nresidence during the global pandemic. This information has not violated their\nanonymity; rather, it has enabled a categorization of the responses based on these\ndetails for a later evaluation.\nThe second section of the questionnaire was based on a review of EHP-30 (Khong\net al., 2010), a validated tool designed to measure the health-related quality of life\n(HRQoL) in women with endometriosis (Bourdel et al., 2019; Moradi et al., 2019;\nWeeks, 2020). This section inquired about general patient- and disease-specific\ncharacteristics in order to determine the current specific condition that the\nrespondent is diagnosed with in addition to when they were diagnosed, the effect of\nendometriosis on their life, and how it might limit their activity. This section also\nincluded questions regarding the respondent’s current treatments, including fertility\ntreatments.\nThe third section of the questionnaire investigated the effects of the global pandemic\non respondents, incorporating “yes/no” questions. An option of “this is irrelevant for\nme” was added in correspondence to the specific question. This section investigated\nwhether the respondent had experienced any cancelation/ postponement of\nappointments that were initially scheduled for the diagnosis, treatment, or both of\ntheir endometriosis and in vitro fertilization (IVF) appointments of a variety of kinds.\nPage 7\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nThe fourth section of the questionnaire was measured on a numerical rating scale.\nThe degree to which the respondents agreed with the statement given in each\nquestion was scored on a scale ranging from 1 to 5, with 1 representing “strongly\nagree” and 5 representing “strongly disagree.” Each question incorporated\nstatements regarding the effects of the pandemic on a respondent’s decision to seek\nmedical help concerning their endometriosis condition, aggravation of symptoms due\nto the current global situation, changes in the respondent’s mental state, as well as\nstatements concerning the medical management of their disease during the\npandemic.\nThe questionnaire was converted into an online self-administered survey, which was\ndistributed among the participants via email, social media platforms, and academic\ncircles through multi-center collaborations. Data was collected from these online\nself-administered surveys, and subsequently interpreted for further analysis.\nEthical approval\nThe bioethics committee of the Pomeranian Medical University in Szczecin provided\nan exemption from an ethical consent-case number: KB-0012/34/03/2021/Z.\nAdditionally, this study was also granted an ethical approval from the Turkish Ministry\nof Health: 2021-01-13T17_02_26, Başvuru Formu için tıklayınız// KONU No:\nKAEK/2021.01.27.\nPage 8\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nData analysis\nChi-square tests for independence were carried out for the analysis of the two\nvariables: suspension of health services, and the patients mental and physical\nwell-being.\nPage 9\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nRESULTS\nOut of 3024 participants from 59 countries who submitted the questionnaire between\nNovember 2020 and January 2021, 2964 (98.01%) provided information that\nenabled the proper analysis of the results. Table 1 shows the demographic and\nclinical characteristics of the participants. As described, the mean age of the\nparticipants is 33.2 (SD: +/- 7.5) and the distribution between the stages is as\nfollows- stage 1: 4,8% (n=142); stage 2: 9% (n=267); stage 3: 14,7% (n=435) and\nstage 4: 30,7% (n=910). 40,8% (n=1210) of participants stated that they are not\ncurrently diagnosed with a specific stage of the disease.\nFurthermore, this table outlines the general and transformational effects that\nendometriosis imposes on the everyday life of participants. Only 230 participants\nhave stated that their condition has no significant effect or no effect at all on their\neveryday activities, while 1393 participants have stated that they experience a\nsevere compromise in their routine activities. This table also summarizes the\nfrequency with which the participants seek medical attention concerning their\nendometriosis, the fertility status of the participants, as well as the distribution of\nparticipants who were previously or currently diagnosed with SARS-CoV-2.\nTable 2 shows the reported mental health changes that the participants experienced\nduring the COVID-19 pandemic at the time of completing the questionnaire. Figure 1\noutlines the demographic distribution of the participants, related to their reported\nworsening of mental and physical well-being.\n36.3% of the participants reported that their mental health had worsened during the\nPage 10\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\npandemic. 1174 participants reported some kind of cancellation to medical\nappointments, and 49.3% of them stated that their mental health had deteriorated. In\ncomparison, of the 1180 participants who did not experience cancellations and the\n610 who did not have any scheduled appointments, 27.5% and 28.2% reported\nworse mental health, respectively. Moreover, the table identifies the number of\nparticipants who reported that their scheduled fertility treatment and/or surgical\nappointments were postponed or cancelled. It also shows that among the\nparticipants reporting worsening of mental health, 38.8 % (n=71) have tested positive\nfor SARS-CoV-2, and 36.1% (n=1005) have tested negative or were not tested at all.\nTable 3 shows that 35.0% of participants feel their symptoms have been aggravated\nduring the COVID-19 pandemic. For the 1174 participants who had their medical\nappointments cancelled, 43.7% reported that their symptoms had been aggravated.\nIn comparison, from the 1180 participants who kept their appointments and the 610\nthat did not report to have any medical appointments scheduled, 29.4% and 29.0%\nstated that their symptoms had been aggravated, respectively. Table 3 also identifies\nthe number of participants that reported that their scheduled fertility treatments\nand/or their surgical appointments were postponed or canceled. Moreover, from the\nparticipants reporting symptomatic aggravation, 36.0% have tested positive for\nSARS-CoV-2, and 34.9% have tested negative or were not tested at all.\nTables 4a and 4b summarize the self-reported impact of the COVID-19 pandemic on\nmedical healthcare and overall well-being. Most of the respondents (79%, n=2358)\nhad at least one healthcare appointment scheduled during the pandemic. Almost half\nPage 11\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\n(49.9%, n=1176) of them reported at least one cancellation and almost 30% of the\nscheduled surgical and fertility treatments were cancelled (28.2%, n=396 and 29.9%,\nn=255 respectively). Additionally, almost half of the participants (48,8%, n=961)\nreported they would have sought emergency gynecological attention but refrained\nfrom doing so because of their fears concerning arriving at a medical institution at\nthe time of the global pandemic.\nMore than a third of the respondents reported that their symptoms or mental\nwell-being deteriorated during the pandemic (35%, n=1039 and 36%, n=1077\nrespectively) and 39% (n=1164) of them believed that their condition would have\nbeen managed better if the COVID-19 pandemic had not occurred. Conversely, 43%\n(n=1282) respondents asserted that the ways in which they manage their\nendometriosis have not particularly changed because of or during the COVID-19\npandemic. 18% (n=523) of the participants reported neither an impairment of their\nendometriosis management, nor lack of change.\nPage 12\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nDISCUSSION\nThis study represents an open window to a problem that has been evident even\nbefore the pandemic, in which compromising resources to treat and diagnose\nendometriosis significantly affects the overall quality of life of those who suffer from it\n(Leonardi et al., 2020b). The pandemic has amplified existing compromises on the\ngeneral resilience of health care systems worldwide, especially as they relate to the\nmanagement of space, human, and material resources (OECD/European Union,\n2020).\nDrawing on data from 2964 participants from 59 countries, who are diverse in\nethnicity, nationality, and socio-economic status provided the opportunity to present a\nwell-established estimation accounting for the above-mentioned factors. As\nexpected, our data indicate that general absence of care directly impacts quality of\nlife for patients suffering from endometriosis.\nOur study detected important alterations in respondents’ mental and physical\nwell-being, and almost 50% reported a decline in either or both during the COVID-19\npandemic. Our findings suggest that this reported decline in physical and mental\nwell-being can be attributed to the cancellation / postponement of medical\nappointments, including surgical and fertility treatments. This is supported by other\nstudies which have reported considerable negative impacts on women’s mental\nhealth and quality of life while they await fertility treatment during the COVID-19\npandemic (Gordon and Balsom, 2020).\nPage 13\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nSimilarly, 28% have had their scheduled surgical appointments delayed, which can\npostpone both proper treatment and diagnosis. Reports are conflicting about the\nrelevance of these delays in healthcare patients (Unger and Laufer, 2011; Hudelist et\nal., 2012). Nonetheless, several studies have reported a delay in diagnosis of 7 to 12\nyears in women with endometriosis (Hadfield et al., 1996; Husby et al., 2003; Ballard\net al., 2006; Staal et al., 2016). Thus, it is fair to assume that even further delay in\nboth the diagnosis and treatment can be expected during the COVID-19 pandemic.\nFurther follow-up is needed to learn the true impact that this will have.\nMost procedures and appointments in endometriosis healthcare are elective.\nHowever, the fact that almost 40% of respondents believe that their condition would\nhave been better managed were it not for the COVID-19 pandemic indisputably\ndeserves attention. Importantly, more than a third of the participants reported\nphysical or mental harm attributable to the pandemic on their healthcare, and the\nconsequences of these detriments are yet unknown. Long term follow-up studies will\nalso be needed to assess this.\nFinally, it is concerning that almost half of the participants refrained from seeking\nemergency gynecological attention. It remains possible that future phases and\nimplementations of social restrictions will be required. Since all healthcare systems\nshould be prepared to face future high demand challenges, it is necessary to design\nand implement strategies to allow all non-COVID-19 emergencies to be properly\nmanaged.\nPage 14\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nLacking direct and easily quantifiable outcomes, it will be particularly difficult to\nestimate the consequences of the COVID-19 pandemic on people living with\nnon-lethal, highly prevalent chronic diseases such as migraine, fibromyalgia, and\nendometriosis.\nDespite the inherent differences between these illnesses, it is likely that at least\nsome of the repercussions for endometriosis patients that we documented are\nreflected in other diseases with the aforementioned characteristics. Insight from this\nstudy should prove useful for updating endometriosis clinical management guidelines\nall around the world, and for improving the resilience of healthcare systems against\nfuture high-demand challenges.\nLimitations of the study\nDue to a low number of SARS-CoV-2 positive respondents, any test of association\nwould be underpowered, and we are therefore unable to say whether there is a\nsignificant connection or not.\nWith an international questionnaire, arising issues of cultural differences and\nsubjective answers are likely inevitable. In most cases, the research team ensured\nthat at least two people who spoke the target language were translating the survey\nfrom English to the target language, but could not always ensure that two translators\nwhose mother tongue was English were also both fluent in the target language.\nPage 15\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nFurther limitations with a multiple-choice questionnaire are that participants can\nallude to different meanings when selecting the same answer. This problem\nincreases when trying to reach an international sample of people. Furthermore, the\nquestionnaire was anonymous, and we have no confirmation of whether the\nparticipants are indeed real and whether they answered honestly, although there is\nlittle reason to suspect otherwise, given that there was no incentive to take this\nquestionnaire.\nDistribution of the survey online, through various platforms and with the help of\nnational and international endometriosis organizations, resulted in varying levels of\nsuccess, and in some countries, we did not manage to release the questionnaire at\nall.\nEurope and South America are more represented than other areas, with around 90%\nof the respondents residing in these continents.\nAuthor’s notes\nThe intention of this paper is therefore not to focus on the differences between\ncountries, but on the general rather than specific effects of absence of care.\nConsidering the study’s statistical qualities, the findings are unlikely coincidental.\nWhile the global COVID-19 pandemic is ongoing, the present study’s findings are not\nlimited to COVID-19 alone but enable us to understand the consequences of general\nabsence of care in many forms and to eventually conclude how to better manage\nchronic diseases in the future, and in relationship to endometriosis.\nPage 16\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nFuture directions\nFurther research is needed to assess the true impact and long-term consequences\nof the COVID-19 pandemic for patients living with endometriosis. For now, simpler\nmeasurements can be implemented to mitigate the detrimental effects that limited\nhealth care has had on the reported health of the participants. Telemedicine with\nvideo consultations shows promise for some patients (Grimes et al., 2020). This\ncannot replace necessary face-to-face consultations like surgical procedures, but\ncan perhaps help patients that have suboptimal treatment, as they can be followed\nup digitally.\nPage 17\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nCONCLUSION\nThere are multiple components affecting the quality of life of women suffering from\nendometriosis. Our study reveals a clear correlation between the deterioration of the\nreported physical and mental state, and impaired medical care for patients suffering\nfrom endometriosis during the COVID-19 pandemic. The largest difference in\nreported well-being was found among patients who were supposed to undergo\nsurgical procedures but had their appointments cancelled or postponed due to the\npandemic.\nPage 18\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nREFERENCES\n1. Ammar A, Mueller P, Trabelsi K, Chtourou H, Boukhris O, Masmoudi L, Bouaziz B,\nBrach M, Schmicker M, Bentlage E, et al. Psychological consequences of COVID-19\nhome confinement: The ECLB-COVID19 multicenter study. In Pérez-González J-C,\neditor. PLoS ONE [Internet] 2020;15:e0240204. Public Library of Science.\n2. Arion K, Orr NL, Noga H, Allaire C, Williams C, Bedaiwy MA, Yong PJ. A Quantitative\nAnalysis of Sleep Quality in Women with Endometriosis. Journal of Women’s Health\n[Internet] 2020;29:1209–1215. Mary Ann Liebert Inc.\n3. Ballard K, Lowton K, Wright J. What’s the delay? A qualitative study of women’s\nexperiences of reaching a diagnosis of endometriosis. Fertility and Sterility [Internet]\n2006;86:1296–1301. Elsevier.\n4. Birkmeyer JD, Barnato A, Birkmeyer N, Bessler R, Skinner J. The impact of the\nCOVID-19 pandemic on hospital admissions in the United States. Health Affairs\n[Internet] 2020;39:2010–2017. Project HOPE.\n5. Bourdel N, Chauvet P, Billone V, Douridas G, Fauconnier A, Gerbaud L, Canis M.\nSystematic review of quality of life measures in patients with endometriosis. PLoS\nONE [Internet] 2019;14:e0208464. Public Library of Science.\n6. Bourne T, Leonardi M, Kyriacou C, Al-Memar M, Landolfo C, Cibula D, Condous G,\nMetzger U, Fischerova D, Timmerman D, et al. ISUOG Consensus Statement on\nPage 19\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nrationalization of gynecological ultrasound services in context of SARS-CoV-2.\nUltrasound in Obstetrics and Gynecology 2020;55:879–885.\n7. Corte L della, Filippo C di, Gabrielli O, Reppuccia S, Rosa VL la, Ragusa R, Fichera\nM, Commodari E, Bifulco G, Giampaolino P. The burden of endometriosis on\nwomen’s lifespan: A narrative overview on quality of life and psychosocial wellbeing.\nInternational Journal of Environmental Research and Public Health [Internet]\n2020;17:1–17. MDPI AG.\n8. González-Echevarría AM, Rosario E, Acevedo S, Flores I. Impact of coping\nstrategies on quality of life of adolescents and young women with endometriosis.\nJournal of Psychosomatic Obstetrics and Gynecology [Internet] 2019;40:138–145.\nTaylor and Francis Ltd.\n9. Gordon JL, Balsom AA. The psychological impact of fertility treatment suspensions\nduring the COVID-19 pandemic. In Doering S, editor. PLOS ONE [Internet]\n2020;15:e0239253. Public Library of Science.\n10.Graaff AA de, D’hooghe TM, Dunselman GAJ, Dirksen CD, Hummelshoj L, Simoens\nS, Bokor A, Brandes I, Brodszky V, Canis M, et al. The significant effect of\nendometriosis on physical, mental and social wellbeing: Results from an international\ncross-sectional survey. Human Reproduction [Internet] 2013;28:2677–2685. Oxford\nUniversity Press.\nPage 20\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\n11. Grimes CL, Balk EM, Dieter AA, Singh R, Wieslander CK, Jeppson PC, Aschkenazi\nSO, Kim JH, Truong MD, Gupta AS, et al. Guidance for gynecologists utilizing\ntelemedicine during COVID-19 pandemic based on expert consensus and rapid\nliterature reviews. International Journal of Gynecology & Obstetrics [Internet]\n2020;150:288–298. John Wiley and Sons Ltd.\n12.Hadfield R, Mardon H, Barlow D, Kennedy S. Delay in the diagnosis of\nendometriosis: a survey of women from the USA and the UK. Human Reproduction\n[Internet] 1996;11:878–880. Oxford University Press.\n13.Hudelist G, Fritzer N, Thomas A, Niehues C, Oppelt P, Haas D, Tammaa A, Salzer H.\nDiagnostic delay for endometriosis in Austria and Germany: Causes and possible\nconsequences. Human Reproduction [Internet] 2012;27:3412–3416. Oxford\nUniversity Press.\n14.Husby GK, Haugen RS, Moen MH. Diagnostic delay in women with pain and\nendometriosis. Acta Obstetricia et Gynecologica Scandinavica [Internet]\n2003;82:649–653. John Wiley & Sons, Ltd.\n15.Khong SY, Lam A, Luscombe G. Is the 30-item Endometriosis Health Profile\n(EHP-30) suitable as a self-report health status instrument for clinical trials? Fertility\nand Sterility [Internet] 2010;94:1928–1932. Elsevier.\n16.Leonardi M, Horne AW, Armour M, Missmer SA, Roman H, Rombauts L,\nHummelshoj L, Wattiez A, Condous G, Johnson NP. Endometriosis and the\nPage 21\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nCoronavirus (COVID-19) Pandemic: Clinical Advice and Future Considerations.\nFrontiers in Reproductive Health [Internet] 2020a;2:19. Frontiers Media SA.\n17.Leonardi M, Horne AW, Vincent K, Sinclair J, Sherman KA, Ciccia D, Condous G,\nJohnson NP, Armour M. Self-management strategies to consider to combat\nendometriosis symptoms during the COVID-19 pandemic. Human Reproduction\nOpen [Internet] 2020b;2020:. Oxford University Press (OUP).\n18.Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. Impact of endometriosis on\nwomen’s lives: A qualitative study. BMC Women’s Health [Internet] 2014;14:123.\nBioMed Central Ltd.\n19.Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. The Endometriosis Impact\nQuestionnaire (EIQ): A tool to measure the long-term impact of endometriosis on\ndifferent aspects of women’s lives. BMC Women’s Health [Internet] 2019;19:64.\nBioMed Central Ltd.\n20.OECD/European Union. How resilient have European health systems been to the\nCOVID-19 crisis? Health at a Glance: Europe 2020: State of Health in the EU Cycle\n2020;, p. 23–81.\n21.Organization WH. WHO | Process of translation and adaptation of instruments. Who\n[Internet] 2017; World Health OrganizationAvailable from:\nhttps://www.who.int/substance_abuse/research_tools/translation/en/.\nPage 22\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\n22.Parasar P, Ozcan P, Terry KL. Endometriosis: Epidemiology, Diagnosis and Clinical\nManagement. Current Obstetrics and Gynecology Reports [Internet] 2017;6:34–41.\nSpringer Science and Business Media LLC.\n23.Pfefferbaum B, North CS. Mental Health and the Covid-19 Pandemic. New England\nJournal of Medicine [Internet] 2020;383:510–512. Massachusetts Medical Society.\n24.Poll M van, Barneveld E van, Aerts L, Maas JWM, Lim AC, Greef BTA de, Bongers\nMY, Hanegem N van. Endometriosis and Sexual Quality of Life. Sexual Medicine\n[Internet] 2020;8:532–544. Elsevier B.V.\n25.Quality of life and quality of society during COVID-19 | EurofoundAvailable from:\nhttps://www.eurofound.europa.eu/data/covid-19/quality-of-life.\n26.Soliman AM, Coyne KS, Gries KS, Castelli-Haley J, Snabes MC, Surrey ES. The\nEffect of Endometriosis Symptoms on Absenteeism and Presenteeism in the\nWorkplace and at Home [Internet]. JMCP Journal of Managed Care & Specialty\nPharmacy [Internet] 2017;23:.\n27.Staal AHJ, Zanden M van der, Nap AW. Diagnostic Delay of Endometriosis in the\nNetherlands. Gynecologic and Obstetric Investigation [Internet] 2016;81:321–324. S.\nKarger AG.\nPage 23\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\n28.Unger CA, Laufer MR. Progression of Endometriosis in Non-medically Managed\nAdolescents: A Case Series. Journal of Pediatric and Adolescent Gynecology\n2011;24:e21–e23. Elsevier.\n29.Wallis CJD, Catto JWF, Finelli A, Glaser AW, Gore JL, Loeb S, Morgan TM, Morgans\nAK, Mottet N, Neal R, et al. The Impact of the COVID-19 Pandemic on Genitourinary\nCancer Care: Re-envisioning the Future. European Urology 2020;78:731–742.\nElsevier B.V.\n30.Weeks J. Foundation Health Measure Report. Health-Related Quality of Life and\nWell-Being [Internet]. Healthy People [Internet] 2020;Available from:\nhttps://www.healthypeople.gov/sites/default/files/HRQoLWBFullReport.pdf.\nTABLE 1\nVariable N/mean SD / % Min-max CI 95\nAge 33.2 7.5 12-72 32.9-33.5\nAge at diagnosis 27.7 - - -\nStage Stage 1 142 4.8% - -\nPage 24\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nStage 2 267 9% - -\nStage 3 435 14.7% - -\nStage 4 910 30.7% - -\nUnknown* 1210 40.8% - -\nHow often do you\nseek\nOnce a year 668 22.5% - -\ntreatment\nOnce every 6\nmonths\n1112 37.5% - -\nMultiple times\nduring a half year\n762 25.7% - -\nMultiple times a\nmonth\n103 3.5% - -\nOther 319 10.8% - -\nPatients reporting\ndifficulties to\nconceive\nFertility problems -\nYes\n861 29% - -\n- Treated 397 46.1% - -\n- Untreated 464 53.9% -\n-\nEffect of\nendometriosis on\neveryday life **\nSevere limitation 1393 - - -\nLimits physical\nactivity\n1202 - - -\nLimits periodically 1574 - - -\nDoes not limit 230 - - -\nSARS-CoV-2\nStatus***\nPositive 183 6.2% - -\nPage 25\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nNegative/Not tested 2781 93.8% - -\nDemographic\nDistribution\nContinent Residence Origin/ Nationality\nN/mean\nSD/percen\ntage\nN/mean\nSD/percen\ntage\nAfrica 24 0.8% 22 0.7%\nAsia 227 7.7% 231 7.8%\nEastern Europe 156 5.3% 180 6.1%\nNorth America 74 2.5% 78 2.6%\nNorthern Europe 432 14.6% 420 14.2%\nOceania 86 2.9% 75 2.5%\nSouth America 331 11.2% 343 11.6%\nSouthern Europe 1033 34.9% 1030 34.8%\nWestern Europe 601 20.3% 585 19.7%\n* Participants are not diagnosed with specific stage or did not know their stage at the time when\nthey completed the questionnaire.\n** There are no percentage representation of the effect as the patients could choose multiple\nanswers\n*** Participants reporting a positive SARS-CoV-2 test before or during answering the\nquestionnaire\nPage 26\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nTABLE 2\nParticipants reporting mental\nstate deterioration\nYes No %***\nP-value\ns\n1076 1888 36.30%\nCancellation /\npostponement\nMedical\nappointments\nYes\n579 595 49.32%\n<<0.001\nNo 325 855 27.54%\nOther* 172 438 28.20%\nFertility treatment Yes 116 139 45.49%\n<<0.001\nNo 178 417 29.92%\nOther* 782 1332 36.99%\nSurgical\nappointments\nYes 227 168 57.47%\n<<0.001\nNo 329 676 32.74%\nOther* 520 1044 33.25%\nSARS-CoV-2\nstatus**\nPositive\n71 112 38.80%\n0.5\nNegative/Not tested 1005 1776 36.14%\n* Participants reporting to not hold appointments of the kind shown above, not used in chi\nsquared test.\nPage 27\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\n** Participants reporting a positive SARS-CoV-2 test before or during answering the\nquestionnaire.\n*** Percentage of people saying yes in the relevant category.\nPage 28\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nTABLE 3\nParticipants reporting\naggravated symptoms\nYes No %*** P-valu\nes\n1037 1927 34.99%\nCancellation /\npostponement\nMedical\nappointments\nYes 513 661 43.70%\n<<0.00\n1\nNo 347 833 29.41%\nOther* 177 433 29.02%\nFertility treatment Yes 104 151 40.78% <<0.00\n1No 157 438 26.39%\nOther* 776 1338 36.71%\nSurgical\nappointments\nYes 207 188 52.41%\n<<0.00\n1\nNo 338 667 33.63%\nOther* 492 1072 31.46%\nSARS-CoV-2 Positive 66 117 36.07%\n0.8\nstatus** Negative/Not tested 971 1810 34.92%\n* Participants reporting to not hold appointments of the kind shown above, not used for chi\nsquared test.\nPage 29\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\n**Participants reporting a positive SARS-CoV-2 test before or during answering the\nquestionnaire.\n*** Percentage of people saying yes in the relevant category.\nPage 30\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nTABLE 4\nA)\nYes No\nDoes not\napply\n% cancelled\nappointments\nCancellations of any kind\n1176\n(39.6%)\n1182\n(39.8\n%)\n611\n(20.5%)\n49.9\nCancelled surgeries\n396\n(13.3%)\n1007\n(33.9\n%)\n1566\n(52.72%)\n28.2\nCancelled fertility treatments\n255\n(8.5%)\n597\n(20.1\n%)\n2117\n(71.3%)\n29.9\nRefrained from seeking\nemergency gynaecological\nattention\n961\n(32.3%)\n1010\n(34.0\n%)\n998\n(33.6%)\n48.8\n \nB)\nPage 31\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nStrongly\nagree\nAgree Neither Disagree\nStrongly\ndisagree\n% Agree or\nstrongly\nagree\nRefrained from seeking\nany gynecological\nattention\n560\n(18.9%)\n441\n(14.9\n%)\n674\n(22.7%)\n431\n(14.5%)\n863\n(29.1%)\n33.7\nWould seek more help\nwithout the pandemic\n695\n(23.4%)\n495\n(16.7\n%)\n471\n(15.9%)\n347\n(11.7%)\n961\n(32.4%)\n40.1\nSymptoms aggravated\nduring the pandemic\n601\n(20.2%)\n438\n(14.8\n%)\n650\n(21.9%)\n383\n(12.9%)\n897\n(30.2%)\n35.0\nMental state worsened\nduring the pandemic\n568\n(19.1%)\n509\n(17.1\n%)\n536\n(18.1%)\n428\n(14.4%)\n928\n(31.3%)\n36.3\nTheir condition would\nhave been managed\nbetter without the\npandemic\n714\n(24.0%)\n450\n(15.2\n%)\n523\n(17.6%)\n389\n(13.3%)\n893\n(30.1%)\n39.2\nFIGURE 1\nPage 32\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint \n\nPage 33\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 May 10, 2021. ; https://doi.org/10.1101/2021.05.04.21255000doi: medRxiv preprint","source_license":"CC0","license_restricted":false}