Survey of unanswered research questions in endometriosis

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The James Lind Alliance Priority Setting Partnership for Endometriosis set out to identify and prioritise uncertainties, or ‘unanswered research questions’, about endometriosis.

Its mission was to ensure that those who fund health research are aware of what really matters to both women with endometriosis and health care providers.

The JLA PSP for Endometriosis conducted two surveys.

The first between 7 March and 31 May 2016, and a second (follow up) survey between 20 February and 20 March 2017.

These surveys were used to help identify those questions related to endometriosis that mattered both to women who have/have had endometriosis and to the individuals involved in their care and support (family, employers, medical doctors, nurses, and professionals allied to medicine).

A huge thank you to everyone who took the time to take part in our surveys.

What happened to the results of these surveys?

In the first survey we asked everyone to submit up to 3 ‘questions’ they wanted answered about endometriosis. Nearly 2000 people sent us their suggestions with over 4800 questions being recorded. More than half of the respondents had a current diagnosis of endometriosis.

Members of the steering group read all the questions very carefully and from this effort it was clear that the questions fell under a number of themes:

Causes
Symptoms
Treatment options
Treatment outcomes
Prevention
Awareness
Natural history and co-morbidities

For example, there were more than 1000 questions related to ‘treatment options’.

The second survey, conducted between 20 February and 20 March 2017, asked participants to prioritise (rank) a short list of 72 questions that summarised those most often asked in the first survey. The 2000 responses from this second survey identified the 30 most popular questions.

Participants at the final prioritisation workshop

These 30 most popular questions were taken forward to a workshop on 25 April 2017.

The participants at the workshop were from the UK and Ireland with equal numbers of women with endometriosis, supporters, and health care practitioners.

They worked together in mixed groups and after a lively discussion they jointly agreed to a ‘Top 10’ for further research.

The TOP 10 priorities in endometriosis research

Can a cure be developed for endometriosis?
What causes endometriosis?
What are the most effective ways of educating health-care professionals throughout the health-care system resulting in reduced time to diagnosis and improved treatment and care of women with endometriosis?
Is it possible to develop a non-invasive screening tool to aid the diagnosis of endometriosis?
What are the most effective ways of maximising and/or maintaining fertility in women with confirmed or suspected endometriosis?
How can the diagnosis of endometriosis be improved?
What is the most effective way of managing the emotional and/or psychological and/or fatigue impact of living with endometriosis (including medical, non-medical, and self-management methods)?
What are the outcomes and/or success rates for surgical or medical treatments that aim to cure or treat endometriosis, rather than manage it?
What is the most effective way of stopping endometriosis progressing and/or spreading to other organs (eg. after surgery)?
What are the most effective non-surgical ways of managing endometriosis-related pain and/or symptoms (medical/non-medical)?

What have we done since the workshop?

We have been working very hard to share the findings of the workshop and our surveys.

To make sure the research community was aware of the findings we published a paper in The Lancet, one of the most influential medical Journals in the world [1]. An editorial was also published in the British Medical Journal [2].

The results of the survey were presented at the 13th World Congress on Endometriosis in Vancouver in May 2017. At the conference we used the 72 questions from the short list to survey the participants as they included clinicians and researchers investigating endometriosis and its causes who had come to Vancouver from all over the world.

What happens next?

We are sharing our findings via patient organisations and at conferences of researchers.

We are talking to funders about how they might be able to support studies to investigate the Top 10 (and other) questions.

We are going to work with researchers in the USA to produce a new publication comparing the questions posed by individuals based in the UK and Ireland with international participants in our surveys

For any further information please contact Professor Andrew Horne.