Endometriosis- economic and social impact

With the start of the new year we also begin a new collection of articles. This month, we are focusing on endometriosis. Endometriosis, such an enigmatic disease that affects up to 15% of women of reproductive age, yet there is no cure for it currently. Only a treatment to alleviate the existing symptoms. Endometriosis has significant effects on the social, occupational, psychological, and physiological life of women.

In the previous weeks we looked into what endometriosis exactly is, what the symptoms are, and how it can be diagnosed and treated.

But endometriosis is more than this. It has become an economical and societal problem that affects women on more levels than we would think.

Let’s dive in!

Endometriosis is still an under-diagnosed, under-reported and under-researched condition, even though it affects up to 15% of women of reproductive age. Therefore, the economic impact of this condition is significant and similar to other chronic conditions such as diabetes and rheumatoid arthritis.

Endometriosis affects the health-related quality of life (HRQoL) and work productivity across many countries and ethnicities. Several studies researched this impact of endometriosis on society.

One of these studies is the Global Study of Women’s Health (GSWH) (2011), which investigated the impact on life in women living with endometriosis on a global scale. The GSWH is the first study that demonstrates the impact that endometriosis has on health and society. The study was conducted across 10 countries in the period of 2008-2010 and researched the effect of endometriosis on HRQoL. Results showed that affected women had a lower work productivity, up to 10 h/week less. This work productivity results in an economic burden for countries ( around 250 dollars/week at that time in the US) and a lower income for patients. The loss of productivity was measured from two perspectives: presenteeism (reduced productivity while at work) and absenteeism (time of absence from work). The effect of endometriosis on physical HRQoL was considerable, reaching similar quality of life scores as patients with cancer. The pelvic pain and the severity of endometriosis were the main factors that influenced the productivity loss.

The WERF EndoCost Study, conducted in 2011, measured all costs from an economic and societal perspective that are related to endometriosis. The overall costs included direct health care costs (physicians visits, medication, monitoring tests, surgery, hospitalization), direct non-health care costs (transportation, support household activities), direct costs and indirect costs, leading up to an average of 9600 euros annual costs. The true cost of endometriosis is revealed with the additional negative impact on society. Regarding quality of life, women with endometriosis that participated in the study showed up to 19% reduced quality of life, when comparing with a person with the best possible health state.

Another survey (2012) conducted in 10 countries showed that the annual average costs of endometriosis can be as high as 9600 euros per woman. Health care costs make up one third and two thirds are on account of work reproductivity losses.

Many women with endometriosis end up having a lower quality of life due to pain, emotional impact of infertility, anger about disease recurrence and uncertainty about their health related future. From a patient's perspective, as endometriosis is still under-researched, it raises a lot of questions that are influenced by misinformation, myths, taboos, lack of diagnosis, ineffective treatments.

A qualitative research from 2014 explored women’s experiences of living with endometriosis and its impact on th