Endometriosis symptom impact survey: A survey study about the impact of living with endometriosis and its symptoms
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Project Lead
Dr Sarah Lensen+61 492 860 312
Project Details
Endometriosis is a common gynaecological condition which may cause a range of different symptoms including painful menstrual periods, painful sexual intercourse, fatigue, and gastrointestinal problems such as bloating. These symptoms vary considerably between individuals living with the condition in terms of their nature and severity.
Endometriosis research should aim to inform clinical practice and improve the treatment outcomes for people living with the condition by measuring outcomes that are relevant for the individual. However, the way in which research trials for interventions to improve endometriosis-related symptoms are conducted in different ways and measure different outcomes. This makes it difficult to combine or compare results from different clinical trials. In an attempt to standardise the way in which clinical trials measure and report on outcomes, an international consensus group made up of researchers, healthcare professionals, and people living with endometriosis decided on 13 outcomes that should be measured across all clinical trials, regardless of which type of treatment or management strategy was being explored.
One of the outcomes selected was ‘change in the most bothersome symptom’, which allows individuals to specifically nominate a symptom at the start of the trial to be monitored throughout. This outcome has been used in other health conditions before, but not endometriosis. Measuring this outcome is valuable in conditions like endometriosis where the symptoms differ significantly between people and helps to strengthen the ‘patient voice’ in research.
Our group conducted an interview study in 2022 with Australians living with endometriosis and found that ‘bother’ was not representative of the true experiences of living with endometriosis; as such this new questionnaire has been reworded to measure the ‘most impactful symptom’ instead. As there is no questionnaire available to measure the ‘most impactful symptom’ of endometriosis, our group aims to engage with people living with condition to develop and validate a new questionnaire that will likely take the form of a one-page questionnaire that can be easily used in all clinical trials for endometriosis interventions.
Current Project Details
Little is known about which symptoms of endometriosis impact people with endometriosis and which symptoms impact people the most. The results of this survey will help us to develop a new questionnaire which will measure the impact of endometriosis symptoms during clinical research trials.
Ethics Approval Number: 2023-25369-36272-5 (University of Melbourne)
Survey link: https://melbourneuni.au1.qualtrics.com/jfe/form/SV_3w5cqdLy1xMO4aG
Researchers
Dr Sarah Lensen, Research Fellow
Alice Mitchell, PhD Candidate
Collaborators
Dr K Jane Chalmers, University of South Australia, Australia
Prof Steven Kamper, University of Sydney, Australia
A/Prof Helena Frawley, University of Melbourne, Australia
A/Prof Martin Healey, University of Melbourne, Australia
Dr Claudia Cheng, University of Melbourne, Australia
Funding
Norman Beischer Medical Research Foundation
Research Outcomes
Our group is in the process of developing and validating a new questionnaire to measure the ‘most impactful symptom’ of endometriosis. This questionnaire is hoped to be used in all clinical trials for interventions aimed at improving endometriosis pain and symptoms. It is anticipated that this will be a single page questionnaire and will be available in both digital and physical formats.