Current Research on Endometriosis: An Interview with Zélia Breton

Empowering Women’s Health Journeys through Digital Self-Help: Bridging the Information Gap

How did you come to research endometriosis?

During my master’s degree in demography, I was looking for an internship where I could work on data about a population on a health topic. I worked at the French National Institute of Health and Medical Research (Inserm), researching factors associated with diagnostic delay with endometriosis in the ComPaRe endometriosis cohort. The research subject interested me because very little data are known. Over time, I became passionate about the disease and am now pursuing my PhD in epidemiology on factors associated with quality of life in endometriosis between the Inserm and Lyv Healthcare.

What fascinates you most about the topic?

The complexity of the disease made the subject very interesting. Due to the variability of symptoms, types, stages, and societal factors, the condition remains largely unknown, and research is lacking; there are many things to work on!

In your opinion, what are the biggest challenges in the field of endometriosis?

One of the biggest challenges in the field of endometriosis will be to understand and clearly define the different forms of the disease according to symptoms, pathogenesis, type, stage, fertility status, and response to hormone treatment, as each condition requires its own medicine and health pathway.

Could you summarise your research for our readers?

In early May 2023, we presented the preliminary results of our study “Development of a digital program for daily life management with endometriosis: impact on quality of life and symptoms” at the World Congress on Endometriosis in Edinburgh.  Endometriosis patients, who suffer an average of 7 years before diagnosis, typically have more questions than answers about managing their symptoms without a cure. To help women with endometriosis after their diagnosis, Lyv has developed an online support program available in France (Editorial note: Lyv is a French app that helps patients with endometriosis manage this disease, like the German app Endo-App). This study aimed to evaluate the feasibility of developing a digital health program for women with endometriosis and to measure its impact on quality of life and symptom severity. Preliminary results show that after three months of participation in the program, a positive impact was observed (compared to women with endometriosis who did not follow the program):

  • 3x more women saw an improvement in their quality of life thanks to the Lyv program
  • 2x as many women experienced a reduction in their anxiety because of participating in the Lyv program
  • 58% of Lyv program participants experienced a reduction in pain during menstruation.
  • 97% of participants felt that their knowledge of endometriosis improved because of the Lyv program.

How can your work help improve the lives of women with endometriosis in the long term?

Our findings suggest that a digital health program that provides medical and scientific information about endometriosis and multidisciplinary self-management tools can help women manage their lives with endometriosis alongside their medical care. Our work will help ensure that patients have access to information and content on endometriosis regardless of their social and geographic circumstances, which will improve their healthcare pathway and reduce health disparities.

What are your future research goals?

During my PhD, I want to understand the factors related to quality of life in endometriosis.

What do you think of digital self-help like the Lyv app or the Endo app?

I think digital self-help can provide significant access to information and content to women who often get lost in their health journey.

We have now reached the end of the interview. Is there anything else you would like to share with those affected?

Research takes time. But thanks to the results, we are willing to give some solutions for women with endometriosis. Participating in a research project can help you and the endometriosis community!

Louisa Zschenderlein
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