Women With Endometriosis Willing to Participate in Research

A study on Australian women with endometriosis showed that they were willing to participate in research projects.

Key Points

Highlights: 

• Women with endometriosis are willing to participate in research about endometriosis, but lack of flexibility around appointments and accessing the research centers were among the factors hindering their participation.

Importance:

• The findings of this study highlight the importance of designing approaches to ensure convenience and flexibility to increase participation in endometriosis research.

What’s done here:

• Researchers discussed the research priorities, motivators, and barriers to research participation with 120 women living with endometriosis in four focus groups. 

Key results:

• Women living with endometriosis were willing to participate in research.
• Women living with endometriosis were the development of non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. 
• The urgent research needs of some women were new treatments for the management of disease symptoms while others thought research into the cause of endometriosis was more important.
• The main reasons to participate in endometriosis research were hope for symptom improvement and diagnostic delay reduction.
• Motivators for research participation were ease of access to testing centers, access to test results, and automated reminders about data collection.
• Barriers to research participation were time commitments, lack of flexibility, work commitments, safety concerns, and pregnancy planning.

Limitations:

• The participants were Australians only and the findings may not apply to other parts of the world.
• Participants were recruited through social media, which tends to include women with more severe symptoms and worse quality of life and this may affect their research priorities.

Lay Summary

Women with endometriosis are open to participating in research, according to a new Australian study published in the journal "Medicina (Kaunas)". This way, they said, “they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief”. 

Funding for research into endometriosis is still lower than for other chronic diseases and the priorities of patients and clinicians may be different in terms of which areas should be researched.

Here, a team led by Prof. Mike Armour from Western Sydney University in Penrith, Australia, and the Medical Research Institute of New Zealand in Wellington, New Zealand conducted a study to explore the research priorities of women living with endometriosis in Australia as well as factors that shape their participation in research. The team formed four focus groups made of 30 participants each. The topics that were discussed were unmet research needs, factors that were motivating people to participate in research, and barriers holding them back from participating in research.  

The results showed that participants were interested in the development of non-invasive diagnostic tools as well as a more multidisciplinary or holistic approach to treatment. 

The urgent desires of participants were to research treatment options for the management of disease symptoms. Many of the participants preferred non-hormonal treatments, including medicinal cannabis and complementary medicine.  Other participants prioritized research into the cause of endometriosis rather than its treatment so that the disease can be prevented and eventually cured. 

The main reasons for participating in the research were the hope for symptom improvement and a reduction in the time it takes for a diagnosis to be reached.  Factors that motivated women to take part in research were ease of access to testing centers, access to test results, and automated reminders about data collection. 

The participants thought that research incentives for younger patients and the dissemination of information about research projects would increase the number of participants in research.  The barriers to participating in research were time commitments, a lack of flexibility around appointments, work commitments, concerns about the safety of some products, and planning a pregnancy.

Based on these findings, the authors of the study concluded that “researchers must co-design approaches to ensure convenience and flexibility for research participation”.

Research Source: https://pubmed.ncbi.nlm.nih.gov/37763774/