We speak to Jodie from @endophdstudent who tells us all about her research into the disparities in Endo care.
Hiya, I’m Jodie and I am a Health Sciences Research PhD student that is focussed on Health-Related Quality of Life in people with Endometriosis (crazy I know right) and founder of the charity Endometriosis South Coast.
In 2014 at the ripe old age of 30 after spending the entirety of my adulthood as a chef, I drunkenly applied for university because Endometriosis changed my life. I couldn’t work, I was a single mum. And quite honestly, I was at the lowest I had ever been with depression eating at my very core.
So, to turn things around I had a plan to complete a degree in Nutrition and Health, then complete an access course to become a food technology teacher, because if I couldn’t cook any more, I would teach others to cook (needless to say this plan went out the window).
To say I was surprised at being accepted into university is an understatement!
But I was accepted, and I started in the September as a “mature student”. I loved it, and really found a love for Health Psychology. I loved it that much that I went on to complete my master’s in health sciences. And now I am completing my PhD.
So, I am researching how Health Related Quality of Life differs in a range of sample groups of Endometriosis patients, including
• Race
• Hospital setting
• Gender
• Where patients live
By providing evidence of how endo affects the quality of life of patients this research will provide the framework for health care providers to improve the way they diagnose and treat patients with Endometriosis.
Why is it so important that this work is carried out? Well, Endometriosis is a disorder that affects the whole body to which there is no cure. Prevalence rates tell us that it affects between 1 in 8 and 1 in 10 individuals that were assigned female at birth. This equates to approximately 176 million individuals (Hummelshoj, 2017). Endometriosis prevalence has been found to be higher in women with infertility issues, where incidence rates jump to up to 50% (Laganà et al., 2017). Endometriosis can cause severe, and in some cases, debilitating pain that has the potential to impact multiple facets of patient’s lives (Roomaney and Kagee, 2016). In 2011, the EndoCost study was carried out by the World Endometriosis Research Foundation (WERF). It discovered the average cost of endometriosis is €9,579 per woman annually, with €6,298 being lost in work productivity. This is more than double that of direct health costs of €3,113 (Simoens et al., 2011). These figures correlate well to many other studies carried out on women with endometriosis. Research has found that more than 75% of women had reported being absent from work due to endometriosis. This equates to, on average, 5.3 days out of the month, as well as 40% of women becoming unemployed due to the disease (Bernuit et al., 2011).
Despite prevalence rates of endometriosis being so high, there is very little research into the effect of the disease on patient’s lives. In 2016, the National Health and Medical Research council allocated $837,433 to endometriosis research, with diabetes being allocated $64.1 million (NHMRC, 2017), despite endometriosis having very similar prevalence rates to diabetes.
By identifying risk factors that show where endometriosis care can be improved has the potential pave the way for more funds to be allocated to research more into endometriosis care. Funding research into endometriosis by way of larger studies to identify ways to improve patient’s health related quality of life has the potential to improve the lives of patients with endometriosis.
Patients that have been diagnosed with chronic illnesses often describe and experience their illness as a stressor on their life. This forces them to adapt and develop coping mechanisms that may not be healthy. By studying these mechanisms it may give health care providers a more in depth view of how a patient’s life is affected by this multifaceted disease (Roomaney and Kagee, 2016).
What does the research entail? I’m asking as many people with Endometriosis as possible from all over the world to get involved and take a short survey that will mean I can get a Health Related Quality of Life score that I can then apply to demographics. And if you wanted to help out more you can apply to get involved in the interviews that will be with myself that will add some qualitative weight to the statistics.
If you would like to get involved in any way or would like to know more. Please do not hesitate to reach out on hughesj9@roehampton.ac.uk.