What was the effect of the coronavirus disease 2019 (COVID-19) pandemic on healthcare and quality of life in those suffering from endometriosis? Our study reveals a clear correlation between the deterioration of the reported physical and mental state and impaired medical care for patients suffering from endometriosis during the COVID-19 pandemic. The quality of life of patients suffering from endometriosis is compromised in a variety of aspects. In response to the ongoing COVID-19 pandemic, self-isolation practices aimed at curbing the spread of COVID-19 have severely complicated the availability of proper medical care worldwide. The study involved a cross-sectional international self-reported online survey. Responses were accepted between November 2020 and January 2021. The survey was prepared by the Department of Obstetrics and Gynaecology in a medical university setting. The survey contained 17 questions and was placed online. Cooperation with different endometriosis organizations around the world enabled distribution of the survey through their social media platforms. The study participants (n = 3024 replies) originated from 59 countries. The questionnaire was created after a literature review and is partially based on the validated quality of life questionnaires, adjusted to the study question. The survey was then translated to 15 other languages following World Health Organization recommendations as closely as possible. Chi-square tests for independence were carried out for the analysis of the two variables: suspension of health services, and the patients mental and physical well-being. Out of 3024 participants from 59 countries who submitted the questionnaire between November 2020 and January 2021, 2964 (98.01%) provided information that enabled a full analysis. For the 1174 participants who had their medical appointments cancelled, 43.7% (n = 513) reported that their symptoms had been aggravated, and 49.3% (n = 579) reported that their mental state had worsened. In comparison, of the 1180 participants who kept their appointments, only 29.4% (n = 347) stated that their symptoms had been aggravated, and 27.5% (n = 325) stated their mental health had worsened. The results showed that there was a significant link between the reported deterioration of mental and physical wellbeing and impaired medical care (cancellation) (P ≪ 0.001). A total of 610 participants did not have medical appointments scheduled, and these participants followed a similar pattern as the participants who kept their appointments, with 29.0% (n = 177) reporting aggravation of symptoms and 28.2% (n = 172) reporting that their mental state had worsened. Cultural differences among international participants are to be expected and this may have affected how participants from different countries interpreted and answered the questionnaire. Translating the questionnaire into 15 different languages, even though incorporating backwards translation, could possibly lead to different interpretations of given questions, simply based on different wording in the languages. The majority of respondents (around 90%) were from Europe and South America and therefore the findings may not be generalizable to other locations. Further research is needed to assess the true impact and long-term consequences of the COVID-19 pandemic for patients living with endometriosis. This study received no funding and the authors declare they have no relevant conflicts of interest. N/A.
(1) Despite its high prevalence, the diagnostic delay of endometriosis is still estimated to be about 7 years. The objective of the present study is to understand the symptomatology of endometriosis in patients across various countries and to assess whether the severity of symptoms correlates with the diagnosed stage of disease. (2) An international online survey collected self-reported responses from 2964 participants from 59 countries. Finalization of the questionnaire and its distribution was achieved by cooperation with various organizations and centers around the globe. (3) Chronic pain presentation remarkably increased between Stage 1 and 2 (16.2% and 32.2%, respectively). The prevalence of pain only around and during menstruation was negatively correlated to the stage, presenting with 15.4% and 6.9% in Stages 1 and 4, respectively. Atypical presentation of pain was most commonly reported in stage 4 (11.4%). Pain related solely to triggering factors was the most uncommon presentation of pain (3.2%). (4) Characteristics of pain and quality of life tend to differ depending on the reported stage of the endometriosis. Further research may allow a better stage estimation and identification of patients with alarming symptomatic presentation indicative of a progressive stage, even those that are not yet laparoscopically diagnosed.
Background and purpose In response to the ongoing coronavirus disease 2019 (COVID-19) pandemic, self-isolation practices aimed to curb the spread of COVID-19 have severely complicated the medical management of patients suffering from endometriosis and their physical and mental well- being. Endometriosis, the main cause for chronic pelvic pain (CPP), is a highly prevalent disease characterized by the presence of endometrial tissue in locations outside the uterine cavity that affects up to 10% of women in their reproductive age. This study aimed to explore the effects of the global COVID-19 pandemic on patients suffering from endometriosis across multiple countries, and to investigate the different approaches to the medical management of these patients based on their self-reported experiences. Methods A cross-sectional survey, partially based on validated quality of life questionnaires for endometriosis patients, was initially created in English, which was then reviewed by experts. Through the process of assessing face and content validity, the questionnaire was then translated to fifteen different languages following the WHO recommendations for medical translation. After evaluation, the questionnaire was converted into a web form and distributed across different platforms. An analysis of 2964 responses of participants from 59 countries suffering from self-reported endometriosis was then conducted. Results The data shows an association between COVID-19 imposed compromises with the reported worsening of the mental state of the participants, as well as with the aggravation of their symptoms. For the 1174 participants who had their medical appointments cancelled, 43.7% (n=513) reported that their symptoms had been aggravated, and 49.3% (n=579) reported that their mental state had worsened. In comparison, of the 1180 participants who kept their appointments, only 29.4% (n=347) stated that their symptoms had been aggravated, and 27.5% (n=325) stated their mental health had worsened. 610 participants did not have medical appointments scheduled, and these participants follow a similar pattern as the participants who kept their appointments, with 29.0% (n=177) reporting aggravation of symptoms and 28.2% (n=172) reporting that their mental state had worsened. Conclusions These findings suggest that COVID-19 pandemic has had a clinically significant negative effect on the mental and physical well-being of participants suffering from endometriosis based on their self-reported experiences. Thus, they show the importance of further assessment and reevaluation of the current and future management of this condition in medical practices worldwide.