A multi-centre study of the impact of endometriosis on health-related quality of life and work productivity

Background: Endometriosis is a common condition in women of reproductive age, causing pelvic pain and subfertility, but little is known about its impact on health-related quality of life (HRQoL) and work productivity worldwide. Methods: In 10 countries across five continents, this study recruited 1,418 women, aged 18-45, without a previous surgical diagnosis of endometriosis, scheduled to undergo a laparoscopy to investigate symptoms suggestive of endometriosis or to be sterilised. Pre-operatively, women completed a standardised questionnaire assessing symptoms, diagnostic delay, HRQoL and work productivity using validated instruments. Surgeons completed a standardised questionnaire incorporating findings at laparoscopy including endometriosis stage according to revised American Fertility Society criteria. Results: There was a mean delay of 9.2 years (SD 8.8), principally in primary care, between the onset of symptoms and diagnostic laparoscopy. This diagnostic delay was longer in centres where healthcare was predominantly state-funded (12.8 vs. 7.6 years; p<0.001). In multivariate analyses, the delay was positively associated with the number of pelvic symptoms (chronic pelvic pain, dysmenorrhoea, dyspareunia and heavy periods; p<0.001) and a higher body mass index (p<0.001). Physical HRQoL was significantly reduced in affected women compared to those with similar symptoms and no endometriosis (p=0.012). Not being in paid employment, severe pelvic pain and moderate-severe disease were associated with reduced physical HRQoL (all p<0.001). Each affected woman lost on average 10.0 hours (SD 10.6) of work weekly, due mainly to reduced effectiveness while working. The annual indirect cost of endometriosis associated with work productivity loss ranged from US$399 per woman in Ibadan (Nigeria) to US$18,586 per woman in Boston (USA). Conclusions: Endometriosis significantly impairs HRQoL and work productivity across countries and ethnicities, yet women continue to experience diagnostic delays in primary care. A higher index of suspicion is needed to expedite specialist assessment of symptomatic women. Future research should seek to clarify pain mechanisms in relation to endometriosis severity.