key: cord-0754031-93ox18xu authors: Armour, Mike; Ciccia, Donna; Stoikos, Chelsea; Wardle, Jon title: Endometriosis and the workplace: Lessons from Australia’s response to COVID‐19 date: 2021-11-22 journal: Aust N Z J Obstet Gynaecol DOI: 10.1111/ajo.13458 sha: 18c8711c4825f923426bbfcfa1f0b76d3f3a81a5 doc_id: 754031 cord_uid: 93ox18xu Endometriosis is known to impact work productivity. The COVID‐19 pandemic resulted in a shift in working practices for many, with an increase in working from home and/or flexible working hours. The aim of this online cross‐sectional study was to determine if these changes resulted in changes in symptom management and productivity in Australian people with endometriosis. Three hundred and eighty‐nine people responded to the survey. The majority of respondents found that their endometriosis symptoms were much easier to manage, and they were more productive. A key factor was flexibility in work hours and the increased ability to self‐manage their time. Conflict of Interest: MA and DC: NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This survey was not specifically supported by donor or sponsor funding to NICM. MA is a clinical advisory board member for Endometriosis Australia and the chair of their research committee. DC is the co-founder and Director of Endometriosis Australia and until recently their CEO. CS and JW report no conflict of interest. have often meant non-essential workers are able to work partially or completely from home, have provided a unique opportunity to examine the impact of flexible working arrangements on endometriosis symptom management. The aim of this cross-sectional survey was to explore how endometriosis affected people's work prior to the pandemic, what changes (if any) occurred due to COVID-19, and how these changes (positively or negatively) affected people's abilities to work and manage their symptoms. In order to understand how workplace changes during the COVID-19 Severity Scale (FSS). 8 Women were eligible to participate in the study if they were between 18 and 55 years of age, were able to speak English, had a diagnosis of endometriosis from a health professional, were currently living in Australia, and were working in a workplace setting separate from their home prior to the COVID-19 pandemic. Recruitment occurred primarily through email distribution to Endometriosis Australia members, as well as via social media and university media promotions. In order to preserve anonymity, a direct link was provided for distribution. Informed consent was obtained from all participants, with the questionnaire introduction and participant information sheet outlining that completion of the questionnaire implied consent. The questionnaire link was active for 6 weeks between 7 September, 2020 and 16 November, 2020. Research Ethics Committee (approval 2020/131). Data were exported from the Qualtrics platform into SPSS, and descriptive statistics, including frequencies and percentages, were calculated for variables of interest. Three hundred and eighty-nine people with a self-reported diagnosis of endometriosis responded to the survey and were included in the analysis. When asked how having endometriosis has impacted their employment, nearly two-thirds (65.0%) of respondents reported taking unpaid leave to manage their endometriosis, including annual or long service, as they had exceeded sick leave allowance. In open comments, respondents reported fatigue, pain or other symptoms impacting their capacity to work productively. A similar proportion of respondents (64.0%) reported feeling judged when trying to manage symptoms, while others commented on the burden of 'hiding' symptom management from fellow employees or employers. Nearly one-third (31.18%) reported missing out on a promotion during their career as a consequence of their endometriosis symptoms, while 15.93% reported being passed over for projects due to their endometriosis. One in seven (14.71%) respondents even reported being fired as a result of managing their endometriosis. Women with endometriosis reported several hardships experi- respondents did not disclose their endometriosis at work because they did not feel comfortable to do so. Prior to COVID-19, over two-thirds of respondents (68.6%) were in full-time employment, with just over one in five (22.0%) in parttime employment and one in 14 (7.1%) in casual employment. The remainder were in other employment relationships (eg freelance or student). During COVID-19, more than two-thirds (68.57%) of respondents indicated their workplace or employment arrangements had changed, most commonly working from home for at least some of their normal work hours (72%). Table 1 outlines the changes in wellbeing and productivity reported due to changes in working environment due to COVID-19. When asked what novel workplace initiatives would be beneficial in managing endometriosis at work, healthcare benefits (72.64%) and rest periods (70.44%) were rated as extremely or very important by over two-thirds of respondents. Psychology and counselling programs (50%), mindfulness programs (46.54%) and assisted exercise programs (46.23%) were also identified as being EndoWorkplace extremely or very important by half of respondents, with only minority support for coaching or mentoring programs. Qualitative comments indicated that flexible working arrangements, in terms of hours and working from home, were the most useful workplace initiatives to assist in management of endometriosis. Nearly all people with endometriosis had identified that prior to the changes that occurred due to COVID-19 the need to manage their endometriosis symptoms had significant impact on their work life, with nearly two-thirds of women having to take unpaid time off work to manage their endometriosis symptoms. The major factor impacting work productivity, as identified by more than half of respondents, was the inability to undertake flexible working arrangements, in relation to work hours or locations. Given that fatigue and non-cyclical pelvic pain are common symptoms presenting in those with endometriosis, 2 and these symptoms are strongly associated with lost productivity (including presenteeism and absenteeism), 9 it is unsurprising that workplace inflexibility would have a significant effect on symptom management and productivity. While COVID-induced workplace changes have been challenging for many in the community, for our respondents with endometriosis many of these changes were beneficial, with eight out of ten reporting that COVID workplace changes had made management of their endometriosis symptoms easier. As a result of easier endometriosis management and flexible working arrangements, they also felt more productive, with more than half indicating they were more productive as a result of COVID workplace changes. found that while COVID-19 negatively impacted many aspects of the lives of those with endometriosis, a 'hidden benefit' from the pandemic was the ability to work from home, allowing them to better manage their symptoms. 10 Workplace flexibility in relation to time management and working from home were identified by women with endometriosis as There are several limitations to this study. Firstly, all endometriosis diagnoses were self-reported and could not be confirmed due to the anonymous nature of the survey. However, a selfreported diagnosis of endometriosis is accurate in most cases. 12 Secondly, recruitment via social media and support organisations tends to recruit those with more severe impacts on quality of life 13 and therefore caution must be taken extrapolating these results to the entire endometriosis population. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: an Australian survey The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: a national online survey Australian Government Department of Health. National action plan for Supporting workers with endometriosis in the workplace Endometriosis friendly employer scheme N Development of an endometriosis quality-of-life instrument: the Endometriosis Health Profile-30 The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus The effect of endometriosis symptoms on absenteeism and presenteeism in the workplace and at home I'm in iso all the time anyway": a mixed methods study on the impact of COVID-19 on women with endometriosis Fair Work Act Validity of self-reported endometriosis: a comparison across four cohorts Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies Thank you to Endometriosis Australia for their support in the promotion of this survey. COVID-19 restrictions have demonstrated that for those with endometriosis, changes in working arrangements mostly around the ability to self-manage working hours and rest breaks, improved both their own quality of life and also their productivity. Given the potential benefits to both employees and employers, a series of guidelines to help accommodate the needs of those with endometriosis should be developed for an Australian context. No external funding was provided.