{"paper_id":"b15904ab-1d7d-4ff3-b539-632f8ee6c3b0","body_text":"INTRODUCTION \nReview question / Objective The research \nquestions and aims of this scoping review \nwere formed by applying the Population—\nConcept—Context (PCC) framework. This led to \nthe primary research aim: To identify the cross-\ncultural studies that have been performed \ninternationally within the context of medical \nencounters (context) concerning the diagnostic \npathways (factors associated with timing/delay in \ndiagnosis), management pathways (barriers and \nfacilitators in management of disease), patients’ \nneeds and HCPs’ perspective (concepts) in women \nwith endometriosis and HCPs across all age \ngroups (population). To identify the needs of \nwomen with endometriosis and assess HCPs’ \nperspectives in the management of endometriosis \nthe two main research questions were stated: (a) \nWhat are the main barriers to diagnosis and \nefficient management of endometriosis from \npatients' and HCPs’ perspectives? (b) What are the \nmain facilitators in the diagnosis and management \nof endometriosis from patients' and HCPs’ \nperspectives? \nRationale In recent years, only a few studies \nsynthesized women’s experiences that partially \ninvolved the context of medical encounters (e.g. \nYoung et al., 2015; Pettersson et al., 2020), or \nfocused on a single country (e.g. Westwood et al., \n2023). Davenport et al. (2023) conducted a \nqualitative review of the barriers to the timely \nmanagement of endometriosis from the \nperspective of affected individuals as well as \nHCPs. However, to our best knowledge, no prior \nsynthesis with current qualitative and quantitative \ndata on the perspectives of both, HCPs and \npatients, has been undertaken. Thus, this scoping \nreview aims to map scientific literature on barriers \nINPLASY 1\nInternational Platform of Registered Systematic Review and Meta-analysis Protocols\nINPLASYAssessing healthcare needs in endometriosis: \na scoping review protocol\nTimkova, V; Mikula, P; Katreniakova, Z; Howick, J; Nagyova I.\nADMINISTRATIVE INFORMATION  \nSupport -  Agency under grant number APVV-22-0587. \nReview Stage at time of this submission - Completed but not \npublished. \nConflicts of interest - None declared. \nINPLASY registration number: INPLASY202430109 \nAmendments - This protocol was registered with the International \nPlatform of Registered Systematic Review and Meta-Analysis Protocols \n(INPLASY) on 26 March 2024 and was last updated on 26 March 2024.\nCorresponding author: \nVladimira Timkova\nvladimira.timkova@upjs.sk\nAuthor Affiliation:                   \nDepartment of Social and \nBehavioural Medicine, Faculty of \nMedicine, PJ Safarik University in \nKosice, Slovakia.\nTimkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109\nTimkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109 Downloaded from https://inplasy.com/inplasy-2024-3-0109/\nINPLASY202430109\ndoi: 10.37766/inplasy2024.3.0109 \nReceived: 26 /March 2024\nPublished: 26 March 2024\n\nand facilitators in the diagnosis and management \nof endometriosis from patients’ and HCPs’ \nperspectives. As a wide range of data collection \nand analysis techniques were employed in \nincluded studies and our study uses a broad \nresearch question that includes the perspective of \nboth, patients and HCPs’, we decided to conduct \nthe systematic scoping review. \nCondition being studied Approximately 10% of \nwomen of reproductive age are a ffected by \nendometriosis (Mikells and Bontempo, 2022), a \nchronic burdensome gynecological disease \ncharacterized by the presence of endometrial-like \ntissue outside the uterine cavity, which causes an \ninflammatory response (Kuznetsov et al., 2017; \nLamvu et al., 2020). The most common symptoms \nof endometriosis are dysmenorrhea, chronic pelvic \npain, dyspareunia, abnormal menstruation, and \nheavy menstrual bleeding (Delanerolle et al., 2021; \nMárki et al., 2022). Symptoms are often \nprogressive, cyclical, and non-speci fic while \nlesions are located in different parts of the body, \nnot only in the urogenital tract (Davis and \nGoldberg, 2017; Holloway and Tye, 2019). Other \ncommon symptoms may include chronic fatigue \n(Lamvu et al., 2020; Peterson et al., 2023). \nEndometriosis was found to affect brain areas \nrelated not only to pain processing but also to \nemotion, cognition, self-regulation, and reward \n(Maulitz et al., 2022). It seems that approximately \none-third of endometriosis patients su ffer from \nmental health problems (Maulitz et al., 2022) - \nmostly depression or anxiety (Maulitz et al., 2022; \nEstes et al., 2021; Delanerolle et al., 2021; Márki et \nal., 2022). Many women with endometriosis may \nalso suffer from sexual dysfunction, and \napproximately 30–50% of those who are \ndiagnosed with endometriosis struggle with \ninfertility as well (La Rosa et al., 2020). Thus, it is \nnot surprising that endometriosis-related \nsymptoms may significantly affect women's \nidentity (Cole et al., 2021). Women with \nendometriosis experience diminished quality of life \n(QoL) (La Rosa et al., 2020), adverse e ffects on \nintimate relationships, limitations in daily \nfunctioning, reduced social participation, \ndecreased productivity and income, chronic \ncomorbidities, higher utilization of healthcare \nservices, all of which are associated with \nsignificant direct and indirect costs (Soliman et al., \n2017; Surrey et al., 2018; Agarwal, 2019; Facchin \net al., 2020; Eisenberg et al., 2022). \nA recent approach to the diagnosis considers \nendometriosis a complex systemic disease (e.g. \nTaylor, 2021) associated with an increased risk of \nautoimmune conditions such as systemic lupus \nerythematosus, Sjogren's syndrome, multiple \nsclerosis, rheumatoid arthritis, or cardiovascular \ndiseases (Nielsen, et al. 2011; Harris et al., 2016; \nMu et al., 2016). Although is a benign condition, \ngreater risk for the occurrence of malignant \ntransformation such as ovarian cancer and non-\nHodgkin’s lymphoma are slightly more common in \nwomen with endometriosis (Schleedoorn et al., \n2016). Several studies also showed that \nendometrial cancer, thyroid cancer, breast cancer, \nand cutaneous melanoma in patients with \nendometriosis may be more prevalent (e.g. Yu et \nal., 2015; Surrey et al., 2018; Vassilopoulou et al., \n2019; Kvaskoff et al., 2021). Therefore, timely \ndiagnosis, close follow-up, and clinically based \nmanagement of endometriosis considering \npatients' history together with the prevention of \ncomorbidities (Chapron et al., 2019; Agarwal et al., \n2019) seem crucial, especially for women who \nhave a higher chance of malignant transformation \n(Zhang et al., 2021). Although most endometriosis \nis found in the pelvis, it has been identi fied in \nvarious body areas with diverse effects on multiple \norgan systems (Davis and Goldberg, 2017; \nHolloway and Tye, 2019). Considering the \nvariability in the manifestation and progression of \nendometriosis, the fact that it is often \nmisdiagnosed is less surprising (e.g. Chapron et \nal., 2019; Agarwal et al., 2019). As non-invasive \nphysical examination often does not show \nevidence of endometriosis, its diagnosis should \ninclude also women's anamnesis and experience. \nHowever, within the depersonalized healthcare \nsystem, women's knowledge is often dismissed, \nthe symptoms are normalized (Bach et al., 2016; \nMikesell and Bontempo, 2022), and patient-\ncentered communication and care are considered \nunnecessary for the diagnostic process (Krebs and \nSchoenbauer, 2019; Dancet et al., 2023). \nMETHODS \nSearch strategy The search strategy was based \non the three-step process recommended by JBI \n(Peters et al., 2020). We compiled a list of potential \nsearch terms after an initial broad search in \ndatabases. We searched and identified studies \nbased on reviewing titles, and abstracts, followed \nby the keywords. The reference lists of the relevant \npapers were searched for additional resources. \nSearch terms in our review were identi fied as \nendometriosis, health care, clinical care, \ngynecologist, physician, nurse, needs, barriers, \nand facilitators. To identify potentially relevant \ndocuments the following bibliographic databases \nwere searched from 2012 to 2022 in scienti fic \ndatabases including Web of Science, PsychInfo, \nPubMed, CINAHL, Embase, and Cochrane Library \nby two authors (VT, PM). The search was repeated \nINPLASY 2Timkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109\nTimkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109 Downloaded from https://inplasy.com/inplasy-2024-3-0109/\n\nbefore the submission of the scoping review \nresults for publication (in December 2023). Titles, \nabstracts, and keywords were screened to identify \npotentially relevant studies. If the suitability of an \narticle was uncertain, the full text was screened. \nFinally, the reference lists of the relevant papers \nand Google Scholar were searched for additional \nresources. Clinical trial registries were searched to \nidentify unpublished studies or any outcomes that \nmay have been selectively omitted from a study \npublication. \nExample: \nSearch Strings, EMBASE\n(endometriosis:ti AND 'health care':ti,ab,kw OR \n'clinical care':ti,ab,kw OR gynecologist:ti,ab,kw OR \nphysician:ti,ab,kw OR general practitioner:ti,ab,kw \nOR nurse:ti,ab,kw) AND needs:ti,ab,kw OR \nbarriers:ti,ab,kw OR facilitators:ti,ab,kw #1 AND \n'endometriosis'/dm YEARS 2012-2023. \nParticipant or population The research questions \nand aims of this scoping review were formed by \napplying the Population—Concept—Context (PCC) \nframework. This led to the primary research aim: To \nidentify the cross-cultural studies that have been \nperformed internationally within the context of \nmedical encounters (context) concerning the \ndiagnostic pathways (factors associated with \ntiming/delay in diagnosis), management pathways \n(barriers and facilitators in management of \ndisease), patients’ needs and HCPs’ perspective \n(concepts) in women with endometriosis and HCPs \nacross all age groups (population). Study sample \nMost studies included female patients only (n=35). \nA total of 10 studies included HCPs such as \ngynaecologists, GPs, midwives, and nurses. \nAnother 5 studies included mixed samples of \nwomen and HCPs. Patients in 21 studies had \nclinically confirmed a diagnosis of endometriosis \nand the diagnosis was self-reported in 13 studies. \nIn three studies, study samples consisted of both, \nwomen with confirmed diagnoses and self-\nreported/suspected diagnoses of endometriosis. \nTwo studies did not report on the details of the \ndiagnosis. Patients with endometriosis were \nrecruited in clinical settings in a total of 11 studies \nwhile two of those were clinics specialised in \nendometriosis and pain. Most studies used self-\nhelp groups, digital posters, organization forums, \nor social media (n=16). Some studies on women \nwith endometriosis used email (n=3), postal mail \n(n=1), health magazines (n=2), newspapers, flyers, \nand internet ads (n=1). Three studies used a mix of \nsocial media, email, patient/community groups, \nand research centers, clinical settings; and two \nstudies analysed blogs and online narratives. The \nmajority of HCPs were recruited at clinical settings, \nschools, medical databases and associations \n(n=11), mixed with conferences (n=2), and \neducation meetings or roundtables (n=2). In \nstudies that included HCPs (n=15), the majority of \nstudy samples consisted of GPs (n=9) and/or \ngynaecologists (n=6) One study included \ngynaecological nurses, one study included \nmidwives, and two studies included HCPs with \ndifferent specializations (Table 1, Supplement 2). \nNumber of included participants varied from 9 to \n10.738 for women and 6 to 53 for HCPs. \nIntervention NA. \nComparator NA. \nStudy designs to be included Qualitative, \nquantitative, mixed-method. \nEligibility criteria The eligibility criteria were built \non the PCC framework and were in line with the \naims of our review. The inclusion criteria were \npeer-reviewed journal papers with an explicit focus \non patients with endometriosis and the perspective \nof HCPs (such as gynaecologists, GPs, nurses, \nmidwives, and physicians). As diagnostic \nprocesses and healthcare systems may have \nchanged over the past years, we only included \nscientific papers published in the past decade \n(from 2012 to 2023). We included original \nqualitative, quantitative, and mixed-method studies \nthat involved human participants to consider \ndifferent aspects of healthcare needs in \nendometriosis. We excluded commentaries, \ndissertations, economic evaluations, guidelines, \ntechnical reports, conference abstracts, letters, \nreviews, and meta-analyses. No language \nrestrictions were applied (following Peters et al., \n2020). \nInformation sources To identify potentially \nrelevant documents the following bibliographic \ndatabases were searched from 2012 to 2022 in \nscientific databases including Web of Science, \nPsychInfo, PubMed, CINAHL, Embase, and \nCochrane Library by two authors (VT, PM). The \nsearch was repeated before the submission of the \nscoping review results for publication (in December \n2023). Titles, abstracts, and keywords were \nscreened to identify potentially relevant studies. If \nthe suitability of an article was uncertain, the full \ntext was screened. Finally, the reference lists of the \nrelevant papers and Google Scholar were searched \nfor additional resources. Clinical trial registries \nwere searched to identify unpublished studies or \nany outcomes that may have been selectively \nomitted from a study publication.\nINPLASY 3Timkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109\nTimkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109 Downloaded from https://inplasy.com/inplasy-2024-3-0109/\n\nMain outcome(s) Multiple barriers may negatively \naffect the diagnostic process, healthcare \nencounters, and the e fficient management of \nendometriosis. This scoping review identified three \nprominent themes in assessing barriers in the \nmanagement and diagnosis of endometriosis. \nThese themes were related to (1) external social \nand cultural factors, (2) individual HCPs factors \nand structural healthcare-related factors, (3) \ncommunication between patients and healthcare \nproviders/professionals (HCPs), and (4) patient-\nrelated factors. While several studies focused on \nperceived barriers in the diagnosis and treatment \nof endometriosis, attention has been also paid to \nfacilitators that may improve diagnostic accuracy \nand management of endometriosis. Three main \ngroups of factors facilitating the management of \nendometriosis were identified as (1) healthcare-\nrelated factors, (2) facilitators in patient-provider \ncommunication, and (3) patient and community-\nrelated factors. \nAdditional outcome(s) Main barriers in the \nmanagement of endometriosis\nTheme 1 Socio-cultural factors\nSubtheme 1 Discourse of psycho-abnormality and \npsycho-somatization\nSubtheme 2 Sex bias in medicine\nSubtheme 3 Myths, stigma, and taboos\nTheme 2 Individual HCPs factors and structural \nhealthcare-related factors\nSubtheme 1 Perception of women with \nendometriosis as challenging patients\nSubtheme 2 Insufficient awareness, training, and \nknowledge about the diagnosis of endometriosis\nSubtheme 3 Lack of empathy, lack of fidelity, and \npatronizing\nSubtheme 4 Limitations of current diagnostic tools \nand inaccessibility of healthcare\nSubtheme 5 Barriers to delivery of diagnosis\nSubtheme 6 Limitations to determining the most \neffective treatment and follow-up approach\nTheme 3 Patient-related factors \nSubtheme 1 Preference of complementary and \nalternative medicine/information sources as a \nchallenge\nSubtheme 2 Lack of awareness\nTheme 4 Barriers to doctor-patient communication\nSubtheme 1 Challenging communication about \ninfertility\nSubtheme 2 Challenging communication of \npregnancy as a treatment option\nSubtheme 3 Challenging communication about \nlife-impairing pain\nMain facilitators in the management of \nendometriosis\nSubtheme 1 To be believed \nSubtheme 2 Being heard with empathy and \nrespect\nSubtheme 3 Shared decision making\nSubtheme 4 Counselling patients to seek \nevidence-based resources of information\nTheme 2 Patient and community-related factors\nSubtheme 1 Increased patients and public \nawareness and knowledge\nTheme 3 Healthcare-related facilitators\nS u b t h e m e 1 I n c re a s e d a w a re n e s s a n d \ncompetence of specialists and non-specialists\nSubtheme 2 Knowledge, information sharing, and \nemotional support\nSubtheme 3 Efficient pain management\nSubtheme 4 An empathetic approach to fertility \nneeds and priorities\nSubtheme 5 Multi-disciplinary care and continuity \nfollowing diagnosis and treatment plans as a \nfoundation for a biopsychosocial approach.\nData management NA. \nQuality assessment / Risk of bias analysis The \nquality of the included studies was assessed \nfollowing Reardon et al. (2017) using modi fied \nversions of the two checklists developed for \nqualitative and quantitative studies by Kmet et al. \n(2004). In quantitative studies, we assessed \nwhether there was: (1) the objective su fficiently \ndescribed; (2) the study design appropriate; (3) the \nmethod of subject/information selection \nappropriate; (4) the subject description \nappropriate; (5) the outcome and measures well \ndefined; (6) the sample size appropriate; (7) \nanalytics method described/appropriate; (8) the \nestimate of variance reported for the main results; \n(9) control of confounding; (10) results reported in \nsufficient detail; and (11) the conclusions \nsupported by results. The maximum score was 22 \npoints or 18 points, depending on if criterion \nnumber 5 and 8 are applicable. \nIn quantitative studies, we assessed whether there \nwas: (1) the objective sufficiently described; (2) the \nstudy design appropriate; (3) the context for the \nstudy clear; (4) the connection to a theoretical \nframework clear; (5) the sampling strategy clear \nand relevant; (6) data collection clearly described; \n(7) data analysis clear and systematic; (8) \nverification procedures used to establish \ncredibility; (9) conclusions supported by results; \n(10) reflexivity of the account. The maximum score \nwas 20 points. When the two independent authors \ndisagreed about the quality they tried to reach a \nconsensus. If consensus was not achieved, a third \nauthor (IN) was invited in.\nStrategy of data synthesis Data extraction  - Two \nreviewers (VT and PM) independently charted the \nINPLASY 4Timkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109\nTimkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109 Downloaded from https://inplasy.com/inplasy-2024-3-0109/\n\ndata. A preliminary data extraction tool was \ncreated in line with JBI (Peters et al., 2020) based \non the PCC framework, the aims of our study, and \nthe research questions. Two authors (VT, PM) \nextracted the following information from each \nstudy: a) general: title, country, and year of \npublication; b) methods: study design, setting; \nprimary method, c) participants: type (HCP/\npatient); type of HCP involved; the number of \nparticipants; the age of the participant, race/\nethnicity/country of origin of the participant; \nrecruitment method; and diagnosis assessed as \nclinically proven endometriosis or self-reported \ndiagnosis. Finally, we abstracted the data related \nto outcomes of interest related to barriers and \nfacilitators in the management of endometriosis \n(e.g. attitudes, bias, myths, stigma, taboos, \nknowledge, diagnostic tools and management \nmethods, communication gaps and challenges, \nand various unintended consequences/factors) \nfrom the perspective of HCPs and patients. In case \nof disagreement in data extraction, consensus was \nachieved by discussion between the two authors \n(VT, PM). If needed, a third author (IN) was invited \nto resolve disputes. Data analysis and synthesis of \nresults.\nThe results of the search strategy, screening \nprocess, and study selection were reported in line \nwith the PRISMA-ScR recommended method \nusing a flow diagram (Tricco et al., 2018). We \ndescribed the studies by the study design, \nsettings, and study sample. We grouped the \ninformation retrieved from the studies by the key \nthemes related to the barriers and facilitators in the \nmedical encounters they assessed. \nSubgroup analysis NA. \nSensitivity analysis NA. \nLanguage restriction No language restrictions \nwere applied (following Peters et al., 2020). \nCountry(ies) involved Slovakia, United Kingdom. \nOther relevant information The majority of \nstudies included women with endometriosis mostly \nfrom Western countries (n=36), of those, two \nstudies included also women from South Africa. \nOnly two studies included women exclusively from \nnon-Western countries (Iran and Puerto Rico). In \none study country was not clearly defined as it \nanalysed online comments and posts. Race/\nethnicity of women with endometriosis was not \nreported in the majority of studies (n=27). Study \nsamples where ethnicity/race was reported (n=13) \nconsisted mostly of white women with \nendometriosis (82-100%), with one study that \nincluded 73.2% of white women. All studies that \ninvolved HCPs were conducted in Western \ncountries, except one study that involved \ngynecologists from Iran. (Table 1, Supplement 2). \nTime span \nThe majority of the included papers (67.9%) were \npublished in the last 5 years (from 2019 onwards), \nindicating increasing interest in this research area. \nKeywords endometriosis; patient’s needs; \ndiagnostic delay; healthcare; barriers; facilitators. \nDissemination plans Publication in Q1 or Q2 \ninternational Journal with IF . \nContributions of each author \nAuthor 1 - Vladimira Timkova - Conceptualization, \nFormal analysis, Investigation, Methodology, \nResources, Writing—original draft.\nEmail: vladimira.timkova@upjs.sk\nAuthor 2 - Pavol Mikula - Data curation, \nResources, Investigation, Writing—review & \nediting.\nEmail: pavol.mikula@upjs.sk\nAuthor 3 - Zuzana Katreniakova - Writing—review \n& editing.\nEmail: zuzana.katreniakova@upjs.sk\nAuthor 4 - Jeremy Howick - Writing—review & \nediting.\nEmail: jeremyhowick@googlemail.com\nAuthor 5 - Iveta Nagyova - Writing—review \n&editing.\nEmail: iveta.nagyova@upjs.sk\nINPLASY 5Timkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109\nTimkova et al. INPLASY protocol 202430109. doi:10.37766/inplasy2024.3.0109 Downloaded from https://inplasy.com/inplasy-2024-3-0109/","source_license":"CC0","license_restricted":false}