{"paper_id":"df15afa3-3f71-4cae-abad-17a8b2fa6206","body_text":"Abstract\n!\nAim: Endometriosis is a chronic gynaecological\ndisorder with manifold symptoms and psychoso-\ncial effects on the lives of affected women. The\nprevalence of endometriosis is estimated to be\nup to ten percent of women of reproductive age.\nAs a result of its unclear aetiology, only limited\ntreatment options are available. The treatment\nand care of affected women is therefore a chal-\nlenge for their doctors. There is a need for health-\ncare services to provide affected women with\nsupport to cope with the disorder better. The aim\nof the study was to identify supporting and inhib-\niting factors on disease management to develop\nnew support ideas.\nMaterials and Methods: The results are based on\na content analysis evaluation of text responses\nfrom 135 women with confirmed endometriosis.\nOpen questions about disease management were\nposed in a patient questionnaire. A classification\nsystem was developed according to Mayrings\nQualitative Content Analysis, which allowed the\nmain topics to be identified and summarised\nqualitatively using a quantitative intermediate\nstep.\nResults: Social support, treatment, as well as pro-\nfessional and healthcare system performance\nwere found to be particularly supportive by pa-\ntients. However, when questioned about inhib-\niting factors, healthcare system professionals and\ntheir performance were most commonly\ncriticised. Just over 50 % of women expressed their\ncriticism of doctors. Quality of care and empathy\ntowards the patients were especially criticised.\nThere is also a need for improvement with regard\nto communication and general support from doc-\ntors. The results illustrate the importance of doc-\ntors for women affected by endometriosis, but\nmake it clear that there is a great need for im-\nprovement with regard to the profession.\nZusammenfassung\n!\nFragestellung: Endometriose ist eine chronische\ngynäkologische Erkrankung mit vielfältigen\nSymptomen und psychosozialen Auswirkungen\nauf das Leben betroffener Frauen. Die Prävalenz\nvon Endometriose wird auf bis zu 10 Prozent der\nFrauen in der reproduktiven Lebensphase ge-\nschätzt. Durch ihre unklare Ätiologie bestehen al-\nlerdings nur limitierte therapeutische Optionen.\nDie Behandlung und Betreuung erkrankter Frau-\nen wird somit zur Herausforderung für behan-\ndelnde Ärzte. Es besteht Bedarf an Versorgungs-\nangeboten, die betroffenen Frauen Hilfestellun-\ngen zu einem verbesserten Umgang mit der Er-\nkrankung geben. Untersuchungsziel war die Iden-\ntifikation von unterstützenden und hemmenden\nFaktoren auf die Krankheitsbewältigung bei En-\ndometriose, um neue Ideen zur Unterstützung zu\ngenerieren.\nMaterial und Methode: Die Ergebnisse beruhen\nauf einer inhaltsanalytischen Auswertung der\nTextantworten von 135 Frauen mit nachgewiese-\nner Endometriose. In einem Patientenfragebogen\nwurden offene Fragen zur Krankheitsbewältigung\ngestellt. In Anlehnung an Mayrings Qualitative In-\nhaltsanalyse wurde ein Kategoriensystem erstellt,\nmit dessen Hilfe durch einen quantitativen Zwi-\nschenschritt Themenschwerpunkte erkannt und\nanschließend qualitativ zusammengefasst wer-\nden konnten.\nErgebnisse: Es zeigte sich, dass soziale Unterstüt-\nzung, Therapie sowie Akteure und Leistungen des\nGesundheitssystems als besonders unterstützend\nvon den Patientinnen empfunden werden. Bei der\nFrage nach hemmenden Faktoren wurden jedoch\ndie Akteure des Gesundheitssystems und ihre\nLeistungen auch am häufigsten kritisiert. Knapp\nüber 50 % der Frauen äußerten sich kritisch zu\nÄrzten. Besonders wurden die Qualität der Ver-\nsorgung sowie die Empathie gegenüber den Pa-\ntientinnen kritisiert. Ebenfalls bestand hinsicht-\nSupporting and Inhibiting Factors When Coping\nwith Endometriosis From the Patients ʼ Perspective\nUnterstützende und hemmende Faktoren im Umgang mit der Endometriose\naus Sicht der Patientinnen\nAuthors S. Kundu 1, J. Wildgrube 2, C. Schippert 1, P. Hillemanns 1, I. Brandes 1\nAffiliations 1 Medizinische Hochschule Hannover, Hannover\n2 HELIOS Klinikum Hildesheim GmbH, Hildesheim\nKey words\nl\" dyspareunia\nl\" endometriosis\nl\" epidemiology\nl\" gynaecology\nSchlüsselwörter\nl\" Dyspareunie\nl\" Endometriose\nl\" Epidemiologie\nl\" Gynäkologie\nreceived 11. 12. 2014\nrevised 7. 3. 2015\naccepted 19. 4. 2015\nBibliography\nDOI http://dx.doi.org/\n10.1055/s-0035-1546052\nGeburtsh Frauenheilk 2015; 75:\n462–469 © Georg Thieme\nVerlag KG Stuttgart · New York ·\nISSN 0016‑5751\nCorrespondence\nDr. Sudip Kundu\nMedical School of Hannover\n(MHH)\nObstetrics and Gynecology\nCarl-Neuberg-Straße 1\n30625 Hannover\nKundu.Sudip@mh-hannover.de\n462\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nGebFra Science\nDeutschsprachige\nZusatzinformationen\nonline abrufbar unter:\nwww.thieme-connect.de/\nejournals/toc/gebfra\n\n\nIntroduction\n!\nEndometriosis is an estrogen-dependent, commonly chronic gy-\nnaecological disorder which is characterised by the presence of\nendometrium-like tissue outside its physiological localisation in\nthe uterus [1, 2].\nThe epidemiological data on endometriosis available up to now\npredominantly refers to very selective approaches [3 –7] and is\ntherefore not very representative. A German study by Abbas et\nal., based on health insurance data from 2007 using the ICD-10\nclassification system, appears to provide the most reliable infor-\nmation. The data showed prevalences of 8.1 % of women being af-\nfected and 5.7 % of women requiring treatment in their reproduc-\ntive phase of life [8].\nWomen of reproductive age usually develop the disorder, i.e. in\nthe time between their first (menarche) and last menstrual bleed\n(menopause). However, in their “lifecycle approach”, Brosens et\nal. showed that a woman ʼs entire life cycle can be affected [9].\nFrom a sociomedical perspective it should be emphasised that\nthe women are not only affected in their reproductive phase,\nbut also in an important productive phase for their career devel-\nopment. The disorder is accompanied by significant costs [10 –\n12].\nThe causes and mechanisms which play a role in the develop-\nment of endometriosis are not completely clear. A multifactorial\ngenesis of the disorder is currently being discussed amongst oth-\ner things, the research focus being on endometrial cell clusters.\nGenetic, molecular and immunological defects and aberrations,\nas well as environmental endocrinological factors, appear to play\na role in promoting the settlement of endometrial cells in unphy-\nsiological localisations and overriding the designated immune\nresponse [1, 13, 14].\nEndometriosis is not associated with a consistent clinical appear-\nance. A reason for this is the various sites of endometrial settle-\nment, which lead to the various problems and symptoms experi-\nenced by affected women [15]. Pain during menstrual bleeding\n(dysmenorrhoea) and infertility are typical complaints in women\naffected by endometriosis [16]. Tiredness and exhaustion, gastro-\nintestinal disorders (e.g. diarrhoea, bloating, intestinal colic, nau-\nsea and stomach ache), heavy or irregular menstrual bleeding,\npain during sexual intercourse (dyspareunia) or afterwards and\nalso dizziness and headache have been attributed to endometrio-\nsis [17]. In isolated cases, endometriosis can also be associated\nwith serious complications. The symptoms and consequences of\nendometriosis can significantly affect the quality of life of af-\nfected women in many areas. Pain and other physical symptoms\ncan particularly hinder coping with professional and personal\ndaily life [11, 18]. Depression and anxiety disorders can occur as\na consequence of endometriosis [19].\nDiagnosis is a particular challenge and includes non-invasive and\ninvasive techniques. Laparoscopy is the central element for diag-\nnosis and, depending on the results and symptoms, also for treat-\nment. It should be used with the aim of achieving histological\nconfirmation of the diagnosis [20]. The aim of making an early di-\nagnosis has not yet been achieved either in Germany or interna-\ntionally [17]. The duration from occurrence of the first symptoms\nto diagnosis ranges from 6 to 12 years [21 –23].\nA range of surgical and drug treatment options are available;\nhowever, they cannot offer a cure. Because of the complexity of\nthe disorder, an individual treatment concept has to be devel-\noped for each patient which is tailored to their symptoms, site\nand severity of symptoms, as well as to their personal circum-\nstances [24, 25]. The still unexplained aetiology, the chronic and\nvariable course of the disorder, distressing treatment with many\nside-effects as well as a high tendency of relapse are a great chal-\nlenge for doctors as well as for the patients. The focus of medical\nassistance up to now was the treatment of physical symptoms.\nAffected patients – despite their young age – often receive little\nsupport in coping with the disorder and the topic has also found\nlittle resonance in scientific journals [26].\nThe outcome of this is the subject of the present study. Based on\noriginal data from a survey using open questions, we investigated\nwhich inhibiting and supporting factors the study participants\nlisted when coping with disorder to develop recommendations\nfor better care.\nMaterials and Methods\n!\nData collection\nThe investigation was carried out as part of a study sponsored by\nthe Federal Ministry for Education and Research (Bundesministe-\nrium für Bildung und Forschung, BMBF) to evaluate a training\nprogramme for women with endometriosis [39]. To improve\nunderstanding of how patients cope with endometriosis, the pa-\ntient questionnaire used to evaluate the training programme was\nsupplemented with open questions about coping with the disor-\nder (“What has helped you to cope with the disorder the most? ”\nand “What has been lacking in the management of the disorder\nand what could be improved? ”). On a sheet of DIN A4 paper, 12\nConclusion: The results provide the first indication of problem\nareas in the management of endometriosis from which ap-\nproaches could be developed to improve care. However, it must\nbe pointed out that the perspective of affected women was solely\ninvestigated. For a comprehensive analysis, it would be necessary\nto include the perspective of care providers and the influence of\nsociety as well as the healthcare system.\nlich der Kommunikation und der allgemeinen Unterstützung\ndurch Ärzte Verbesserungsbedarf. Die gewonnenen Ergebnisse\nverdeutlichen damit die Bedeutung der Ärzte für an Endometri-\nose erkrankte Frauen, geben aber auch ganz klar zu verstehen,\ndass bez. dieser Berufsgruppe ein großer Bedarf an Verbesserung\nbesteht.\nSchlussfolgerung: Die vorliegenden Ergebnisse können erste\nHinweise auf Problembereiche im Umgang mit der Erkrankung\nEndometriose geben, aus denen Ansätze zur Verbesserung der\nVersorgung abgeleitet werden können. Einschränkend muss da-\nrauf hingewiesen werden, dass hier ausschließlich die Perspek-\ntive der erkrankten Frauen untersucht wurde. Für eine umfassen-\nde Analyse wird es erforderlich sein, auch die Perspektive der\nLeistungserbringer einzubeziehen und die Einflüsse der Gesell-\nschaft sowie des Gesundheitssystems zu erfassen.\n463\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nOriginal Article\n\n\nto 14 lines were available to the study participants to answer\nthese questions. The questionnaire was sent to the participants\nfor them to complete before they took part in the training pro-\ngramme. All questionnaires which were received by the Institute\nfor Epidemiology, Social Medicine and Health System Research at\nHannover Medical School by October 2009 were included in the\npresent analysis. The topic of coping with the disorder was used\nas part of a dissertation [40] due to the unexpectedly detailed and\ncomprehensive answers.\nDevelopment of a classification system\nThe data basis was the written answers to the open questions in\nthe patient questionnaire. Data evaluation was performed as a\n“quasi qualitative” summary of the content analysis according to\nMayring und Kuckartz, including quantitative intermediate steps\n[27, 28]. Categories were generated from the written material by\nthe inductive formation of categories and depicted in the form of\ncategory systems. The main topics of the answers were identified\nand investigated quantitatively by coding of the written material\nand subsequent frequency analysis. The open questions used\nwere deliberately worded in a very broad sense to encourage a\nwide variety of answers. The intention of the analysis was to\nidentify these topics with regard to the aims of the project, i.e.\nto identify the relevant support needs and – where possible – to\nattain an impression of their importance.\nRandom sample\nRecruitment of patients for the study took place through easy ac-\ncess routes such as newspaper and internet adverts as well as the\ndistribution of flyers in gynaecological practices. A confirmed di-\nagnosis of endometriosis, age 18 years or over and, because of the\nstyle of data collection, sufficient understanding of the German\nlanguage were stated as inclusion criteria. The study participants\nwere therefore composed of 135 women who completed the dec-\nlaration of consent.\nResults\n!\nDemographics of the study participants\nThe mean age of the study participants was 38.4 years (SD\n± 8.0 years) and the main focus lay in the 31 –45 year age group.\nAt the time of questioning, 66 women were married (48.9 %), 27\n(20.0 %) were cohabiting and 35 participants (25.9 %) stated that\nthey were single, separated or widowed. At the time of question-\ning, 68 women (50.4 %) had achieved university entrance and a\nfurther 15 (11.1 %) technical college entrance. 40 study partici-\npants (29.6 %) ended their schooling with a secondary school lev-\nel I certificate (GCSEs) and 8 women (5.9 %) with a primary school\nor secondary general school certificate. Three women stated that\nthey had graduated from a polytechnic secondary school and one\nparticipant was still at school.\nDelay in diagnosis and duration of illness\nof the study participants\n102 participants were able to state when their symptoms first oc-\ncurred and when the final diagnosis of endometriosis was made.\nA mean delay in diagnosis of 7.8 years (n = 102, SD ± 9.9 years)\nwas found in the study population and, based on information giv-\nen about the diagnosis, the mean duration of illness was found to\nbe 7.9 years (n = 132, SD ± 6.9 years) at the time of data collection.\nThe delay in diagnosis was not taken into account here.\nCoping with the disorder from the perspective\nof the programme participants – overview\nThe supporting and inhibiting factors when coping with the dis-\norder, as well as the factors that were determined as main catego-\nries in the analysis, were initially listed in synopses. 120 women\ngave a written answer to the question: “What has helped you to\ncope with your disorder the most? ”. l\n\" Fig. 1 further shows how\nmany women commented on each of the individual categories.\nNo fixed response options were set out in the questionnaire; the\nentries are based on the participants ʼ written answers.\nThe statements included in the women ʼs written answers could\nbe thematically assigned to 12 main categories which were then\nfurther divided into sub-categories. Due to the scope and com-\nplexity of the classification system, all the sub-categories are not\npresented in addition. However, for better understanding, it\nshould be noted that the main categories were deliberately sepa-\nrated into “professionals” and “professionals and their perform-\nance” based on the patients ʼ information about their social envi-\nronment and the health system. Many women named precise\npeople, professions (e.g., relatives, friends, doctors, psychothera-\npists etc.) or institutions (e.g. hospitals) in direct association with\ntheir performance, characteristics and behaviour (e.g. “discussion\nwith my doctor” or “a doctor who takes my problems seriously ”),\nwhich had a supportive effect on their disorder management\nfrom their point of view. By differentiation and classification into\nfurther subcategories, specific indicators could be gathered about\nwhich professionals and which areas of their performance are of\nparticular importance from the patients ʼ point of view when\ndealing with the disorder.\nIn l\n\" Fig. 1, it is clear for the first time that the members of the so-\ncial environment are ranked as being on a par with the treatment\n(n = 58) as being the most important factors when coping with\nthe disorder by with women who were questioned, followed by\nthe social environment (n = 50), healthcare system professionals\n(n = 49) and self-management (n = 44).\nl\n\" Fig. 2 shows the responses to the question, “What has been\nlacking in the management of the disorder and what could be im-\nproved?” from 115 of the 135 women.\nA total of 64 participants saw room for improvement which could\nbe assigned to the “healthcare system professionals ” category,\nfollowed by performance of the healthcare system professionals\n(n = 56) as well as the treatment (n = 53). According to the study\nparticipants, the greatest need for action in the management of\nendometriosis lies in these three main categories.\nProfessional and healthcare system performance\nCorresponding with the number of mentions, the results of the\nquantitative-qualitative analyses on supporting and inhibiting\nfactors relating to the healthcare system professionals (all profes-\nsional care providers and healthcare insurance providers as well\nas self-help groups and facilities and their performance) are pre-\nsented in the following sections. Presentation of the results, espe-\ncially factors identified as part of the study, is outside the scope of\nthis publication.\nSupporting aspects\nIn response to the question about what had helped affected\nwomen to deal with endometriosis the most, 49 of the 120 wom-\nen (40.8 %) mentioned healthcare system professionals. Doctors\nwere most commonly named in this main category (61.2 %,\nn = 30). This was followed by 14.2 % (n = 7) of women who rated\nself-help groups or the nationally active German Endometriosis\n464\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nGebFra Science\n\n\nUnion (Endometriose-Vereinigung Deutschland e. V.) and its of-\nfers and services as being helpful. Further support services were\nfound by 6 women via internet forums (12.2 %), which serve as\nvirtual exchange platforms for communication and consultation\npurposes. Hospitals were named by 10.2 % of participants (n = 5)\nand 3 women mentioned an alternative practitioner. A psycho-\ntherapist, a therapist (without further description), the Endome-\n70605040\nNumber of participants who commented (n = 120)\n3020100\nMembers of the social environment 58\nTreatment 58\nSocial environment 50\nHealthcare system professionals 49\nSelf-management 44\n27\n27\n13\n11\n7\n5\n3\nInformation\nPerformance of the healthcare system professionals\nAdditional treatment methods\nDiagnosis\nWorking environment\nExternal, non-controllable events and factors\nOther\nFig. 1 Supporting factors in disorder management from the perspective of the study participants.\n70605040\nNumber of participants who commented (n = 115)\n3020100\nHealthcare system professionals 64\nPerformance of the healthcare system professionals 56\nTreatment 53\n33\n23\n18\n17\n13\n12\n8\n5\nInformation\nSocial environment\nSystem\nDiagnosis\nMembers of the social environment\nSelf-management\nAdditional treatment methods\nWorking environment\nFig. 2 Inhibiting factors when coping with the disorder from the perspective of the study participants.\n465\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nOriginal Article\n\n\ntriosis League and Women ʼs Health Centres were each named by\none of those affected, respectively.\nProfessionals were commonly described in direct association\nwith their respective features and performance. The category\n“performance of the healthcare system professionals ” was cre-\nated to record this and contained the statements from a total of\n27 patients. This main category included features and perform-\nance of the professionals which underwent further differentia-\ntion into sub-categories such as quality, empathy and communi-\ncation.\nl\n\" Table 1 provides an overview of the participants ʼ comments on\nthe sub-categories. The individual comments are summarised\nand shown ranked in descending order of relevance. The most\ncommonly named feature or performance which helped patients\nto cope with the disorder is listed first each time.\nAltogether, the responses of 11 participants were assigned to the\nsub-category quality and the participants commented positively\non quality, competence, awareness, reliability of the professional\nor the quality of care. A typical comment can be described using\nthe following quote: “a doctor who knows what he is doing ”.A n\nempathetic and sensitive approach, especially from the doctors\ntowards the patients and their problems when dealing with the\ndisorder (e.g. “compassion from the doctor ”, understanding from\ndoctors“), was described by a further 11 study participants. In the\nsubcategories, communication with healthcare system profes-\nsionals was mentioned by 9 participants who found communica-\ntive interaction helpful (e.g. ”discussions with doctors “ and ”dis-\ncussion in internet forums ”).\nInhibiting aspects\nAlthough the comments about helpful influences from over one\nthird of the study participants could be assigned to healthcare\nsystem professionals, 56 % of the women questioned referred to\naspects which were lacking or in need of improvement in con-\nnection with healthcare system professionals.\nIn addition to criticism of medical institutions such as hospitals\nand health insurance companies – 5 and 4 women remarked on\nthese respectively – it was almost exclusively the medical profes-\nsion that was viewed critically in this category. 59 of the 64 par-\nticipants (92.2 %) who expressed deficits recommendations relat-\ning to healthcare system professionals based the criticism on the\nmedical profession.\nA category for healthcare system professionals was also created\nfor inhibiting aspects. This included the subcategories quality,\nempathy, support and communication.\nThe results of the qualitative analysis of the individual subcatego-\nries are shown in l\n\" Table 2 and are listed as a summary of the\nparticipantsʼ main statements.\nThe responses of 56 women could be allocated to this area. 52\nparticipants also named the professional(s) whose performance\nthey criticised.\nCritical comments about the quality of the healthcare system\nprofessionals were made by 34 women (60.7 %). These included\naspects such as competence, awareness and reliability as well as\nthe quality of care. The study participants often criticised that the\ndoctors were not informed about the disorder, that they weren ʼt\nfamiliar with it and that they do not have adequate skills in the\nfield of endometriosis. Some women highlighted the ignorance\nof doctors in the field of endometriosis, which one study partici-\npant described as “a catastrophic medical situation [ –] no one\nknows!”. From the responses of individual women, it became\nclear that they see the doctors ʼ poor level of information as the\nreason that their symptoms are not promptly recognised and di-\nagnoses are made late. It was also assumed that the lacking famil-\nTable 1 Summary of the comments on the performance of the healthcare\nsystem professionals – supporting influences.\nSub-\ncategory\n“What helped me the most …”\nQuality \" Professionally competent and qualified doctors,\ngynaecologists, hospitals and contact persons\n\" The belief and the feeling of being in good hands\nduring treatment and in hospital\n\" Doctors who give me the feeling that they know\nwhat they are doing\n\" Doctors who are informed about and skilled\nin endometriosis\n\" A good gynaecologist\n\" The right clinic and their right assisted conception centre\nEmpathy \" Doctors who take me and my symptoms seriously\nand believe me\n\" Understanding and sympathy from doctors and gynaecol-\nogists\nCommuni-\ncation\n\" Discussion with my treating doctor, doctors and\n\" Discussion with various doctors\n\" Discussion with doctors from an endometriosis centre\n\" Postoperative discussion with the surgeon\n\" Discussion with a psychotherapist who is also\na gynaecologist\nTable 2 Summary of the comments on the performance of the healthcare\nsystem professionals – inhibiting influences.\nSub-\ncategory\n“What was lacking, what could be improved …”\nQuality \" Informed, well trained and competent gynaecologists\nand doctors in other disciplines\n\" Ignorance and poorly informed gynaecologists and doctors\n\" Training, education and further education for\ngynaecologists and doctors in other disciplines as well as\ngeneral and improved education of these doctors\n\" Better pre/postoperative care in the clinic and from doctors\n\" Interdisciplinary teamwork between doctors from various\nspecialities and multidisciplinary knowledge in doctors\nfrom other specialities\nEmpathy \" To be taken seriously by gynaecologists and doctors\n\" Doctors who take those affected and their symptoms\nseriously\n\" General recognition of the disorder and recognition\nby doctors, health insurance companies and social security\nauthorities\n\" Sensitivity and empathy from doctors\n\" Understanding from doctors, health insurance companies,\npension schemes and assessors\n\" To be taken seriously by doctors\nSupport \" General support and offers of help from doctors\n\" Financial support and relief during acute phases\nof the disorder\n\" Coverage of the costs of drugs, rehabilitation measures\nand alternative therapies\n\" Generally more support from health insurance companies\nCommuni-\ncation\n\" General discussion and someone to talk to\n\" Discussion with the surgeon\n\" Final discussion after the operation\n\" Discussion with the gynaecologist\n\" Professional, honest communication\n466\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nGebFra Science\n\n\niarity of many doctors with the disorder is the reason that pa-\ntientsʼ problems are not taken seriously. The criticism is not only\ndirected at specialists in gynaecology, but also doctors from other\ndisciplines who are also poorly informed. Multidisciplinary\nknowledge was called for. In response to the question about what\nwas lacking in the management of the disorder or what could be\nimproved, education and training of doctors was commonly\nmentioned. One participant demanded “regular training and ed-\nucation for gynaecologists, urologists, internists, general practi-\ntioners, psychologists etc.”.\nIn the subcategory “empathy”, 26 women (46.4 %) regarded the\nmanner and perceived attitude of the healthcare system profes-\nsional towards the patient as being in need of improvement.\nComments were especially summarised here which reflect the\nwomenʼs assessment of their perception by the doctors/profes-\nsionals. Most commonly criticised was that doctors “do not take\n[affected women and their problems] seriously ”. Some women\ndescribe situations that they have experienced with doctors. A\ntypical statement in this category can be quoted from one partic-\nipant in the following sentence: “My many years of pain, espe-\ncially during menstruation, were not taken seriously by any of\nmy gynaecologists, but were always just treated with pain-\nkillers”. Another patient reported a statement from her doctor,\nsaying that as a woman, she would just have to put up with pain.\nThese and other similar experiences have prompted the study\nparticipants to demand that pain and discomfort should be\nviewed as a pathological event by doctors and they should recog-\nnise the burden of the disorder. This criticism and the resulting\ndemands are mainly aimed at doctors. A lack of empathy on the\npart of the health insurance company and social security author-\nities were also mentioned by one woman, respectively.\nThe two subcategories presented represent the most commonly\nnamed areas in performance of the healthcare system profession-\nals. Furthermore, 12 participants (21.4 %) demanded (more) sup-\nport from healthcare system professionals and 7 participants\n(12.5 %) complained about communication with them.\nDiscussion\n!\nTo ensure the widest possible spectrum of responses, a research\ndesign was chosen which allowed for open questions about cop-\ning with the disorder in the patient survey. The aim of the study\nwas to find initial of how the disease management of endome-\ntriosis patients can be supported and improved. These findings\nhave gone into the development of a training programme for\nwomen with endometriosis in which the subject of coping with\nthe disorder (aspects of the healthcare system, doctor-patient re-\nlationship, social support) has gained significantly more room\nthan originally planned.\nCritical appraisal of the study design and limitations\nof the research method\nA fundamental problem in connection with the questionnaire is\nthat the questions posed with the terminology used could not be\nfurther explained to the participants. It therefore remains un-\nclear to what extent the questions were understood as defined\nby the research team. However, a pretest did not uncover any\ncomprehension problems and no obvious misunderstandings\nwere detected from the available responses. It should also be\nconsidered that the influence of social desirability on the re-\nsponse bias cannot be excluded. Several study participants wrote\nanswers about experiences in their medical history which were\nbeyond the actual question. With regard to the study results, it\nshould always be considered that response styles and response\ntrends are influenced by motivation and intention of the partici-\npant, as well other factors such as the point in time of the answer.\nSince no possible answers were provided, it can be assumed that\nthe present answers do not represent all topics and that the fre-\nquency representations are subject to bias.\nPatient selection\nAs a result of voluntary participation in the study, a selection ef-\nfect can be assumed. It cannot be excluded that increased distress\nand high motivation have an affect on this study.\nWith regard to the socio-demographic factors of the subsample,\nit is striking that an above-average number of women have a high\nlevel of education. Regarding marital status, almost 70 % (n = 93)\nof the women were married or cohabiting. The influence of edu-\ncation and social support on coping behaviour has been proven in\nvarious studies on other illnesses. Therefore, it cannot be ex-\ncluded that the results obtained in this study may be especially\nrelevant for socially well-integrated women who are highly edu-\ncated and who differ from those with poor social support and\npoorer education. For this reason, the problems encountered\nhere in dealing with endometriosis may possibly have been\nunderestimated.\nThe results obtained in this work should be viewed as the first\nindications of possible problem areas when dealing with the dis-\norder.\nThe role of doctors in the management of endometriosis\nAssuming that the number of women who express their views on\na particular topic is an indication of the importance of this aspect,\nit can be seen that social support in particular together with the\ntreatment of endometriosis are of the greatest importance for the\nstudy participants. In this context, the healthcare system profes-\nsionals only play a minor role when coping with the disease.\nSince the influence on the social environment is often limited,\nhealthcare systems professionals should take action to improve\ncoping strategies. The presented results suggest that the per-\nformance of the professionals does not always meet the needs\nand expectations of the women questioned. Just over 50 % of the\nanswers to the question about what was lacking in the manage-\nment of the disorder and what could be improved related to doc-\ntors. The importance of the doctor for a woman affected by endo-\nmetriosis was hereby made clear on the one hand; on the other\nhand the figures make it completely clear that there is a great\nneed for improvement regarding this profession. In particular,\nappropriate ( “empathetic”) explanation and counselling is ex-\npected from doctors. In contrast, empathy and communication\nwere indicated as being an important supporting factor in the so-\ncial environment, so a compensation for the medical deficits may\noccur here.\nDoctors who helped to cope with the disease from the women ʼs\nperspective are characterised by competence and qualification.\nFurthermore, according to their own statements, women benefit\nfrom doctors who are understanding towards them and show\nthem compassion. Therefore, doctors do not only have a role as a\nmedical expert, but also as a personal contact. In 1996, Muthny\nexpressed the view that doctors play a particularly important\nrole when coping with an illness. Through professional diagnosis\nand treatment, they create the conditions for coping which they\ncan guide in the right direction by discussions, understanding\n467\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nOriginal Article\n\n\nand compassion based on a trusting doctor-patient relationship\n[33]. The women questioned very clearly described what is im-\nportant to them in terms of coping with the disorder. Proper\ncommunication with the doctors ( “discussions with doctors ”)i s\nexperienced as being helpful. These statements support the call\nfor a re-evaluation of “talking medicine ”, which is also being in-\ncreasingly demanded by other healthcare system professionals\n[29, 30]. The complexity of the disorder requires much time spent\nas an out-patient as well as an in-patient. To what extent the cur-\nrent remuneration structures or other aspects of the healthcare\nsystem influence the care of endometriosis should be investi-\ngated as part of further studies [31, 32].\nA special feature in connection with endometriosis seems to be\nthat women complain most frequently about a “normalisation”\nof their condition and that they and their condition are “… not\ntaken seriously …” by the doctors. In a larger study of endome-\ntriosis patients, Green et al. were able to show that these are not\njust isolated cases. In this study, more than half the respondents\n(59.6 %) said that they had not been taken seriously by doctors or\nwere told that everything was fine [34]. These results are consis-\ntent with those of other studies (e.g. [17, 35, 36]). As part of other\nstudies, it will have to be clarified to what extent this is – at the\nsocietal level – a manifested misinterpretation on the part of doc-\ntors or a problem in the area of doctor-patient communication, in\norder to then develop and implement appropriate action.\nA further aspect of the doctor-patient relationship was broached\nin Ballard ʼs study to investigate the causes of diagnostic delays\nand their impact. Ballard believes that the medical attitude of\nnot taking patients seriously and trivialising their condition is a\nreason that diagnoses are somewhat delayed. However diagnosis\nis a liberating moment, especially for women who have suffered\nwith pain and other problems for many years [37]. The delay in\ndiagnosis identified in this study was 7.8 years on average, and\nresponses from 17 women who call for quicker diagnosis con-\nfirmed the assumption that women must still suffer from their\nsymptoms for a long time before their illness is recognised. It\ncan also be seen from the results that some of the patients hold\nthe ignorance of the doctors responsible for their late diagnosis.\nIn this context, demand for quicker referral to suitable doctors\nand for more specialists can be derived from the study material.\nAs a consequence, Hudelist et al. and Ebert et al. see a need to in-\ntensify the events within the framework of training and continu-\ning education on endometriosis in order to improve the care of\nwomen suffering from the disorder [21, 38]. Gynaecologists espe-\ncially, and also doctors from general medicine, gastroenterology\nand urology, who come into contact with patients suffering from\nendometriosis because of their symptoms should be considered\nhere [38]. In addition to teaching diagnostic and therapeutic pos-\nsibilities, the main objective would be to raise awareness among\nphysicians to actually consider endometriosis as a differential di-\nagnosis. The development of a good doctor-patient relationship\nrequires far more than just treatment, patient education and\ncounselling by doctors. Doctors should understand the impact of\na disease on the lives of their patients in order to jointly develop a\ncustomized treatment plan with them. Additive or alternative\ntherapies (TCM, acupuncture, homeopathy, etc.) should also be\noffered, as it has been shown that these are in demand by those\naffected and providing alternatives to conventional medicine can\nbe used to improve the doctor-patient relationship.\nConclusion for Clinical Practice\n!\nEndometriosis is a difficult and complex disorder which affects\nall areas of a woman ʼs life. In terms of coping with the disorder,\nendometriosis is distinctive as women have to deal with a high\ndegree of taboos and prejudices as well as a lack of knowledge in\nsociety. For this very reason, the doctor-patient relationship, the\ninteraction with patients and the subject of coping with the dis-\norder should return to the centre of attention in clinical settings.\nKnowledge of mechanisms, forms and influencing factors on cop-\ning with the disorder are essential. This could not only guarantee\nbetter healthcare, increased patient satisfaction, prevention of\nmisunderstandings between doctor and patient and promotion\nof patient compliance, but improvements from an economic per-\nspective could also be achieved. The establishment of these topics\nhas already taken place at medical school, and information\nevents regarding this should be offered for practising doctors.\nConflict of Interest\n!\nNone.\nReferences\n1 Bulun S. Endometriosis. N Engl J Med 2009; 360: 268 –279\n2 Giudice L, Kao L. Endometriosis. Lancet 2004; 364: 1789 –1799\n3 Guo SW, Wang Y. 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Qualitative Analyse der Krankheitsbewältigung von Endome-\ntriose-Patientinnen. Diss. Medizinische Hochschule Hannover, 2013\n469\nKundu S et al. Supporting and Inhibiting … Geburtsh Frauenheilk 2015; 75: 462 –469\nOriginal Article","source_license":"public-domain-us","license_restricted":false}