Study question: What was the effect of the coronavirus disease 2019 (COVID-19) pandemic on healthcare and quality of life in those suffering from endometriosis?
Summary answer: 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.
What is known already: 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.
Study design size duration: 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.
Participants/materials setting methods: 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.
Main results and the role of chance: 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.
Limitations reasons for caution: 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.
Wider implications of the findings: Further research is needed to assess the true impact and long-term consequences of the COVID-19 pandemic for patients living with endometriosis.
Study funding/competing interests: This study received no funding and the authors declare they have no relevant conflicts of interest.
Trial registration number: N/A.
Keywords: COVID-19; coronavirus disease 2019; endometriosis; healthcare systems; infertility; mental health; pelvic pain; quality of life; questionnaire; women’s health.
© The Author(s) 2022. Published by Oxford University Press on behalf of European Society of Human Reproduction and Embryology.