Satisfaction with medical support in women with endometriosis

Ilona Lukas, Lukas I, Alexandra Kohl-Schwartz, Alexandra Kohl Schwartz, Kirsten Geraedts, Geraedts K, Martina Rauchfuss, Rauchfuss M, Martina Rauchfuß, Wölfler MM, Monika M Wölfler, Monika Wölfler, Häberlin F, Felix Häberlin, Stephanie von Orelli, von Orelli S, Markus Eberhard, Eberhard M, Bruno Imthurn, Imthurn B, Imesch P, Patrick Imesch, Brigitte Leeners
PloS one · 2018 · vol. 13(11) , pp. e0208023 · doi:10.1371/journal.pone.0208023 · PMID:30496315 · PMC6264517 · W2902688734
article OA: gold CC0 ⤵ 46 in-corpus citations
📄 Open PDF Full text JSON View on OpenAlex View on PubMed View at publisher
⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This study found that feeling adequately informed, having mental health concerns taken seriously, and receiving pain management support were significantly associated with satisfaction with medical support in women with endometriosis.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 · read from full text ⓘ

This multi-centre retrospective cohort study of 498 histologically confirmed endometriosis patients (2010–2016) assessed predictors of patient satisfaction with medical support using a standardized questionnaire and comparisons between satisfied and dissatisfied women. Overall, 54.6% of participants reported being satisfied, and feeling adequately informed by the time of diagnosis, taking women’s mental troubles seriously, and supporting women in handling their pain were each significantly associated with satisfaction. The authors note limitations including exclusions due to incompletely filled questionnaires (73 women) and that the satisfaction measures were developed for this study because no validated tools existed for evaluating endometriosis-related medical support. This paper is centrally about endometriosis — predictors of patient satisfaction with medical support among women with endometriosis.

Read from the paper's body, not the abstract. Not a substitute for reading the paper. No clinical advice. How this works

Abstract

Endometriosis affects various aspects of women's lives. We searched for predictors for patient satisfaction with medical support (PSwMS) in women with endometriosis. The study was designed as a multi-centre retrospective cohort study. We approached women with histologically confirmed endometriosis from 2010 until 2016, comparing women satisfied to women dissatisfied with medical support. We analysed data on characteristics of endometriosis, PSwMS and the influence of disease characteristics on PSwMS. Information on satisfaction with medical support was collected through a standardized questionnaire. After exclusion of 73 women because of inchoately filled in questionnaires, data from 498 women was evaluated. Altogether, it was observed that 54.6% (n = 272) of the study participants were satisfied with medical support and 45.4% (n = 226) were not. Feeling adequately informed by the time of diagnosis (p < 0.001), taking women's mental troubles seriously (p < 0.001) and supporting women in handling their pain (p < 0.001) were significantly associated with satisfaction. We found adequate information to be the most distinctive indicator for PSwMS. Further, acknowledging psychological distress and supporting women in handling their symptoms rather than to alleviate them, positively affect PSwMS. To achieve PSwMS, healthcare providers have to give adequate information on endometriosis and its management.
Full text 24,700 characters · extracted from pmc-nxml · 4 sections · click to expand

Intro

Endometriosis is an oestrogen-dependent, chronic inflammatory condition, affecting between 5 and 10% of women in their reproductive years [ 1 , 2 ]. The symptoms of endometriosis include dysmenorrhea, dyspareunia, non-menstrual pelvic pain, dyschesia, dys-uria, musculoskeletal pain, fatigue and infertility [ 3 – 7 ]. Therefore, endometriosis affects women’s quality of life [ 1 , 8 , 9 ] and often leads to psychological strain [ 9 ]. However, women’s symptoms are not always taken seriously and are often normalized by doctors [ 10 , 11 ] or even by themselves [ 10 ]. Hence, many women suffer over years until they receive a reliable diagnosis [ 11 ]. In the UK, till today the diagnostic delay is 8.0 years (SD: 7.9) [ 12 ], in Austria and Germany 10.4 years (SD: 7.9) [ 13 ] and in the USA 11.7 years (SD: 9.1) [ 12 ]. Various therapeutic options for endometriosis as well as pregnancy show comparable and unfortunately very limited results [ 14 , 15 ]: Surgery has a positive effect on dyspare-unia, on pain and infertility as well as on quality of life on a short-term basis [ 16 – 18 ]. However, in 10-55% of the cases symptoms reoccur [ 19 , 20 ]. As medication e.g. mostly hormonal treatment often also does not succeed to reduce disease symptoms to a satisfactory degree, many women have to deal with chronic symptoms and consequently need medical support for a prolonged time [ 18 ]. The chronic nature of the disease, the diverse presentation as well as pain, infertility and fatigue, with its impact on private and professional areas of quality of life, challenge medical support [ 21 , 22 ]. But at the same time this makes adequate support particularly important. Patient satisfaction with medical support (PSwMS) is essential since it does not only strongly influence quality of life and the psychological strain associated with endometriosis but is also related to an improving health status [ 23 ]. In addition, patient satisfaction reduces complaints and the number of second opinions sought of, potentially cutting costs [ 24 ]. However, very few studies have addressed satisfaction with medical support in endometriosis [ 11 ]. These studies had very small sample sizes (30 participants) and did not systematically search for options for improvement. With the present study, we therefore aimed to (i) get an overview on patients’ satisfaction with medical support in women with endometriosis, with a careful differentiation between women attending self-help groups and those recruited in hospitals and private offices. Also, we (ii) searched for predictors for PSwMS. We (iii) investigated the provided information through medical professionals and perceived attitude of doctors toward patients to adapt current support structures better to patients needs. Than, we considered the individual needs of women with endometriosis. Lastly, we (iv) analysed their suggestions for adequate medical support.

Results

A total of 573 questionnaires were returned. We had to exclude 73 because of incomplete data. We collected 67 of the 573 questionnaires in self-help groups, of which 65 could be included in the analysis. Lack of time and the intimate nature of some of the questions were the most common reasons to decline study participation. Of all participants, 54.6% (n = 272) were satisfied with their medical support and 45.4% (n = 226) were dissatisfied. Only 27.7% (n = 18) of WfSHG were satisfied. Table 1 shows an overview about the sociodemographic data of the study participants. Women reporting to be adequately informed by the time of diagnosis were significantly more often satisfied with medical support than women feeling inadequately informed (p < 0.001). A total of 85.2% (n = 231) satisfied women and 21.4% (n = 48) of the dissatisfied women felt adequately informed at the time of initial diagnosis. In WfSHG we also found significant differences for provision of adequate information at the time of diagnosis (satisfied = 38.9%; dissatisfied = 12.8%; p = 0.018). However, in satisfied WfSHG the inadequate informed women were predominant. In WrHPO, we found adequate information in 84.2% (n = 224) of satisfied and in 23.7% (n = 42) of dissatisfied women. There were also significant differences (p-value <0.001). Table 2 shows if topics with impact on quality of life (e.g. pain management, fertility) and mental health support were part of medical counselling as well as the importance of women diagnosed with endometriosis attributed to each issue. With one exception, more than 80% of women rated all three topics (pain management, fertility, mental health support) as a necessary part of medical counselling. Women were significantly more often satisfied with medical support when each of these three issues was addressed either at initial diagnosis or later. In WfSHG we found no significant difference in mentioning these topics between satisfied and dissatisfied women. Provided information and education about endometriosis as well as its association with patients’ satisfaction is summarised in Table 3 . Each question showed a significant difference between satisfied and dissatisfied women in the total study group, in WrHPO and in WfSHG. The weakest result was on the advice to exchange with other affected women, followed by doctors cooperating well with other doctors, e.g. pain-specialists and doctors developing a plan for the best possible life with endometriosis. Overall, most medians were lower in WfSHG when compared to the total study group and most medians from WrHPO were as high as medians from the total study group or higher. The three questions with the lowest result in the total study group also had a very low result in WrHPO and in WfSHG. In addition, in WfSHG the question about sexual counselling had a median of 2 in satisfied women and a median of 1 in dissatisfied women. An exception in WrHPO made the question about information on conventional therapeutic options, which had a median of 2 in dissatisfied women compared to a median of 3 in the whole study group and WfSHG. The content analysis of womens’ suggestions for improvement of medical support revealed 14 different aspects, which are presented in Table 4 . The need for better education and information, including information about the cause and healing was mentioned by 10.4%. Furthermore, 8.4% requested an individual approach to deal with endometriosis including alternative treatment and treatment for psychological issues and 7% wanted doctors to take women and their pain seriously. Fig 1 shows the sources satisfied and dissatisfied women used to gather information on endometriosis. Multiple answers were possible. P-value1: satisfied vs. dissatisfied total study group; p-value2: satisfied vs. dissatisfied WrHPO; p-value3: satisfied vs. dissatisfied WfSHG. Internet: n = 362; Communication with doctor: n = 322; Books/Magazines: n = 230; Communication with other affected women: n = 142; Internet exchange with other affected women: n = 80; Others: n = 62. Fig 2 gives an overview on the sources women experienced as most helpful to gather information on endometriosis. Sources of helpful information varied significantly between satisfied and dissatisfied women of the total study group (p < 0.001; p-value based on a Pearson Chi-Square test analysis), in WrHPO (p < 0.001) and between WrHPO and WfSHG (p < 0.001) but not in WfSHG only (p = 0.056). Satisfied women estimated communications with doctors more often as beneficial, while dissatisfied women preferred the Internet. In both groups, these two sources were used most often. a-f: Sources experienced most helpful to gather information. a) in satisfied WrHPO (n); b) in dissatisfied WrHPO (n); c) in satisfied WfSHG (n); d) in dissatisfied WfSHG (n); e) in WrHPO; f) in WfSHG (n); A: Communication with doctors (n = 198); B: Internet (n = 153); C: Books/Magazines (n = 33); D: Exchange with affected women (n = 38); E: Online exchange with affected women (n = 7); F: Others (n = 14). In Table 5 the regression analysis shows the predictors we found for patient satisfaction. Even though all factors taken into the regression analysis showed statistically significant differences, only three factors could be identified as predictors for PSwMS. Provision of adequate information increases the probability for satisfaction almost eight times. Furthermore, taking mental troubles seriously and supporting women in handling their pain improved satisfaction with medical support. Hosmer and Lemeshow Test Chi-square=2.804; df=7, p-value=0.902

Conclusions

With this study we could show that many women with endometriosis are still not satisfied with medical support. Most women were lacking information about the disease or treatment options. We identified adequate information as an indicator for patient satisfaction. Further, many women experienced psychological distress and acknowledged that it positively affects PSwMS. Last, we found that it is more important to support women in handling their symptoms than to alleviate them to enhance satisfaction. To achieve PSwMS, we have to take the time to inform and educate patients during the first consultations but also in consecutive ones. It is crucial to show all treatment options to let women adequately participate in therapeutic decisions. Meeting patients with empathy to create a relationship, where they feel welcome to ask questions or present their specific needs and individual expectations is mandatory for PSwMS. Such approach is essential to allow endometriosis-affected women to achieve the best possible quality of life. Delicate topics like sexuality should be integrated, symptoms and psychological strains acknowledged, and interdisciplinary support offered when needed and wanted.

Materials|Methods

The study was designed as a multi-centre retrospective cohort study on quality of life in women diagnosed with endometriosis [ 6 , 25 , 26 ]. The local ethics committee (Cantonal Ethics committee Zurich, Switzerland, KEK_StV-Nr. 05/2008) approved the study. All women included in this analysis, signed an informed consent, including the permission to collect data from medical charts for confirmation of diagnosis. The study was conducted according to the declaration of Helsinki. The STROBE criteria were used to draft the manuscript [ 27 ]. The questionnaire was given to women diagnosed with endometriosis. They were recruited in Switzerland, mainly at the university hospital Zurich, the Triemli hospital Zurich, and the hospitals in Schaffhausen, St. Gallen, Winterthur, Baden, Solothurn and Walenstadt, as well as in associated private offices. The Charité Berlin, the Albertinen hospital Hamburg, the Vivantes Humbold Klinikum Berlin and the University hospital Aachen also made an essential contribution in Germany. In Austria, women were recruited at the university hospital in Graz. In addition, women were approached at different self-help groups in Germany. Women were only included if the diagnosis of endometriosis was histologically and/or surgically confirmed. Participants also needed the mental, psychological and linguistic ability to understand and answer the questions. They were excluded if the stage of endometriosis was unknown, the questions about PSwMS (Were you satisfied with medical support in regard to endometriosis?) remained unanswered or if more than 50% of the answers investigating details of patient satisfaction were missing. Women with endometriosis were approached by medical staff, their gynaecologist or within the self-help group and received information about the study. With their consent to participate, women were handed the study documents, containing an informational flyer about the progression, confidentiality, and aims of the study, as well as a questionnaire and a return envelope. Furthermore, a declaration of consent was included. Specialists for endometriosis and psychosomatic medicine from the universities of Zurich and Berlin developed the questionnaire, in cooperation with the leading board of the endometriosis self-help groups in Germany. For this study, we included questions on sociodemographic data ( Table 1 ) and questions on satisfaction with medical support ( Table 2 ). a: p-value based on an independent t-test analysis b: p-value based on a Pearson Chi-Square test analysis c: p-value based on a Mann Whitney test analysis a: Percentages were calculated in relation to the total number of participants (n = 498) b: p-value based on a Pearson Chi-Square test analysis As there are no validated tools to evaluate medical support in the context of endometriosis questions on satisfaction with such support were designed for this study. First, women had to report whether they were satisfied with medical support provided by health care providers (yes/no). For closer investigation, we analysed the influence of chronic pain and infertility at the initial consultation, when diagnosis was explained, as well as at a later time point. We also addressed mental health support, since women with endometriosis are more likely to experience anxiety and depressive symptoms, which need treatment to prevent a manifestation of affective disorders [ 28 ]. We then evaluated provided information and education about endometriosis during medical consultation ( Table 3 ). For this assessment, we asked 20 questions and classified them into four groups: Communication, interpersonal, expertise and therapy. With a Likert scale reaching from 1 (is not true at all) to 7 (is entirely true), we assumed a median of 3 or less means the modality was neglected. Questions on satisfaction with medical support were pilot tested in a group of 30 women with endometriosis for reasons of understanding and accuracy. Women participating in the pilot study were not included in the final analysis. Comparing medians. The scale was from 1 to 7, women rated 7 if they agreed and 1 if they disagreed. a: P-value is based on a Mann Whitney test analysis With a preselected list of six answers and the possibility to add a free text answer, we evaluated sources women used to get information about endometriosis and which source they perceived most helpful. Finally, women were given the opportunity to suggest improvements for supporting and educating women with endometriosis in free text answers. Their suggestions were analysed by content one by one and resulted in 14 different subsections, which are shown in Table 4 . All information could be integrated into these 14 points. Answers from women participating in self-help groups (WfSHG), were compared to responses from women recruited in hospitals or private offices (WrHPO) to evaluate whether particular dissatisfaction with medical support might have been the motivation to participate in a self-help group. All statistical analysis was performed with SPSS, Version 22 for Mac OS IBM. An independent t-test for continuous variables and a Mann Whitney-U-test for ordinal-scaled variables evaluated differences between satisfied and dissatisfied women. We compared mean values to evaluate provided information and education to adjust statistical outliers. Categorical characteristics were compared through Pearson Chi-Square. A p-value < 0.05 was considered statistically significant. We conducted a stepwise multiple logistic regression analysis to identify factors predicting PSwMS. We included sociodemographic characteristics with significant differences between satisfied and dissatisfied women, the information on feeling adequately informed about endometriosis at the time of diagnosis as well as the answers to any topic addressed during consultations (see Table 2 ). In addition, answers to the questions from Table 3 : “Took my mental troubles seriously”, “Took me and my complaints seriously”, “Advised me well in regard to fertility” and “Supported me handling my pain” were entered into the analysis, because they were considered as clinically very important.

Text is read by the "Ask this paper" AI Q&A widget below. Extraction quality varies by source — PMC NXML preserves structure cleanly, OA-HTML may include some navigation residue, and OA-PDF can have broken hyphenation. The publisher copy (via DOI) is the canonical version.

My notes (saved in your browser only)

⚙ Ask this paper AI returns verbatim quotes from the full text · source: pmc-nxml ⓘ

Answers must be backed by verbatim quotes from this paper's full text. Hallucinated quotes are dropped automatically; if no verbatim passage answers the question, we say so. How this works

Condition tags

endometriosis

MeSH descriptors

Endometriosis Patient Satisfaction Adult Emotions Endometriosis Female Forecasting Health Knowledge, Attitudes, Practice Health Knowledge, Attitudes, Practice Humans Middle Aged Patient Medication Knowledge Patient Medication Knowledge Patient Satisfaction Personal Satisfaction Quality of Life Retrospective Studies Stress, Psychological Surveys and Questionnaires

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (47)

Cited by (47)

Source provenance

europepmc
last seen: 2026-08-10T06:11:17.106188+00:00
openalex
last seen: 2026-06-10T17:14:06.276822+00:00
pubmed
last seen: 2026-05-13T22:19:25.021412+00:00
License: CC0 · commercial use OK