Current Research on Endometriosis: An Interview with Dr. Karina Ejgaard Hansen
“It’s so important that women with endometriosis get every support possible, including how to manage pain, fatigue, and all the other invalidating symptoms.”
Teresa Götz: Thank you for being here. Could you please introduce yourself briefly?
Dr. Karina Ejgaard Hansen: My name is Karina Ejgaard Hansen. I’m a Clinical Psychologist that also works as a researcher at Aarhus University Department of Public Health. My research focuses on the impact of endometriosis on patients’ mental health, quality of life and pain management. In relation to that, we’ve developed the FEMaLe project, which stands for Finding Endometriosis using Machine Learning. Its goals are the improvement of diagnosis and care in endometriosis.
Teresa Götz: How did you come to research endometriosis coming from a psychology background?
Dr. Karina Ejgaard Hansen: As a candidate I specialized in work psychology. At the same time, I worked as a volunteer in the Endometriosis Patients’ Association, leading pain management groups, and consulting patients over the phone.
At the time, the Patients’ Association wanted to increase the public and political awareness of endometriosis by pointing out its huge cost for society due to reduced workability of those affected. I had the realization I could combine my background with this idea. My thesis study looked into workability among women with endometriosis compared to a control group of women without endometriosis.
The results showed that, in general, they had lower workability, but also that a longer diagnostic delay was associated with a lower workability.
I presented the results of the study to the professor of endometriosis at the Department of Obstetrics and Gynecology at Aarhus University Hospital. We got the study published and in collaboration with the Danish Endometriosis Patients Association we applied for funding for a Ph.D.-project.
They had already done a small observational study looking into the effects of mindfulness-based interventions on quality of life and endometriosis. For my Ph.D. we set it up as a randomized controlled trial. After my Ph.D., I continued my research in the field.
About Dr. Karina Ejgaard Hansen
Dr. Karina Ejgaard Hansen is a psychologist and researcher specialized on relationship of endometriosis and mental health. In an interview with the Endo App’s psychologist Teresa, she talked about her current project aiming to create accessible psychological interventions for endometriosis patients suffering from chronic pain.
Teresa Götz: What motivated you to continue the way into endometriosis care?
Dr. Karina Ejgaard Hansen: Professionals from the Patients’ Association and my institute kept telling me that there were often women that they didn’t know what to offer because they continued suffering from chronic pain even after medical or surgical treatment.
In every other disease, there are guidelines on how to manage chronic pain, and how to learn to live with it, and we miss that in endometriosis. My motivation was to help these women and possibly be a first mover in this area. It’s so important that women with endometriosis get every support possible, including how to manage pain, fatigue, and all the other invalidating symptoms.
Teresa Götz: In your opinion, what is the greatest challenge in the field of endometriosis?
Dr. Karina Ejgaard Hansen: Generally, big challenges are that we know so little about the disease and its mechanisms and we don’t have a cure. There also is a long diagnostic delay, leading to disease courses with chronic pain and causing negative effects on mental health and quality of life in the affected women. If we were able to diagnose endometriosis earlier, it would not develop in such an invalidating way.
Teresa Götz: Could you summarize your work in a few words and talk about the FEMaLe project?
Dr. Karina Ejgaard Hansen: The FEMaLe project is built on my Ph.D. project. In my Ph.D. project, we developed a mindfulness and acceptance-based intervention for managing endometriosis, endometriosis-related pain and other invalidating symptoms. It’s based on mindfulness-based stress reduction and acceptance and commitment therapy.
It includes psychoeducation and patient education about endometriosis, experiences of other patients and we teach them mindfulness meditation and yoga. The first trial examining the effects of this intervention was conducted in a face-to-face group-based version. We found a significant and large improvements in quality of life, but many women were not able to participate due to long distance and transportation or lack of energy showing up each week.
To be more accessible, we digitalized the program and have started pilot testing it with the participants. We also wanted to examine whether therapist contact via video consultations would add to the positive effect even more. In the upcoming year we will start a randomized controlled trial with three groups: One will go through the program guided by the program, another will go through the program and also receive one weekly video session with the therapist.
The last group will be the waitlist control. We have to show that if there is a positive effect of the intervention, that positive effect would not have happened anyway.
Teresa Götz: Is it individual therapy with a therapist, or is it a group therapy?
Dr. Karina Ejgaard Hansen: For this trial it will be individual therapy. That’s based on the logistical problems we experienced in the Ph.D. study trying to find a time during the workday when a group can meet up at the same time on a weekly basis. The most feasible way that you can do it is at home, and it’s as flexible as possible because you don’t have to show up at a certain time point.
Teresa Götz: In your opinion, what are the greatest opportunities or challenges in the digital self-help and self-management field?
Dr. Karina Ejgaard Hansen: An enormous benefit that is also being reported back to us by participants is the amount of knowledge that we can transfer. Participants can go into the program for as long as they want to and return whenever they want. The material is always available online, so they go back and read it again if they want to.
It’s also easy to update a digital program when new evidence emerges. What can be challenging is the aspect of motivation. Participants have to go through the program on their own and are only responsible for themselves. I have the hypothesis that there may be a larger dropout in the group of women going through the program self-guided because they may lose motivation.
On the other hand, that might demonstrate that the therapy sessions have an impact on the participation. A lot of the time in therapy is used to talk about how to modify the practical exercises to fit the individual participant better and to help them overcome other obstacles in their individual experience. In contrast, participants going through the program self-guided would have to figure these things out by themselves.
Teresa Götz: Are there other future goals besides the ongoing FEMaLe project, or is that your focus right now?
Dr. Karina Ejgaard Hansen: Right now, I’m concentrating on the FEMaLe project. We will continue the randomized control trial after the completing the project. Then we have to see what will come next. It could be really interesting to look into which group of participants has the largest effect and whether we are able to predict who benefits from what the most.
Perhaps we could then offer some stepped care where the women who need more support to complete the program get the additional help that they need, while others are able to do the program on their own. If we can determine what characterizes these women, we can sort them into the correct group beforehand so that they receive the appropriate care and benefit best from it.
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