Publications and Presentations
The team has produced a summary report and recommendations arising from the study, which can be downloaded here. If you would like to request a hard copy of this report, please contact Caroline Law on 0116 2506124 or at firstname.lastname@example.org.
The research team produced a short film about the ENDOPART project, its findings and implications.
The team along, with leading UK charity Endometriosis UK, has produced a new webpage addressing the impact that endometriosis can have on both women and their partners, and on the couple relationship. The webpage describes the various ways in which the condition might affect couples, and offers information and advice about coping with the condition as a couple. It also includes a film exploring this issue, featuring real life couples and advice from a Clinical Psychologist. To correspond with the launch of these resources, Endometriosis UK support group sessions addressing the impact of endometriosis on couples are being delivered at various locations across the UK – click here to find your local support group and to enquire about this session.
The team has reviewed past research into the social and psychological impact of endometriosis on women’s lives. This critical narrative review has been published by Human Reproduction Update. Further information can be found here.
The team published an article on how endometriosis can result in biographical disruptions amongst couples. This was published by Sociology of Health and Illness. Further information can be found here.
We also published findings about how the condition can affect male partners. This was published by Human Reproduction. Further information can be found here.
Findings from the study have been presented at 15 national and international conferences. Details can be found here.
Further information about many of these presentations, including details of authors, titles and abstracts, can also be found here.
In 2013, the European Society of Human Reproduction and Embryology (EHSRE) produced a draft Guideline for the Management of Women with Endometriosis, and invited reviewers’ comments. The ENDOPART study team submitted to ESHRE a response to the draft guideline which described the ENDOPART study findings and made recommendations. We recommended that the guideline advocate that management and information provision should take a more couple-centred, holistic and biopsychosocial approach and better address the emotional, sexual and relational impact of this disease. On receipt of this response, ESHRE responded to the study team and advised that these findings and recommendations would, where relevant, be incorporated into the final guideline and/or into a patient version of the guideline or other guidelines in development.
- Access the study team response to the draft guideline here
- Read the final ESHRE Guideline for the Management of Women with Endometriosis here
Findings and recommendations from the ENDOPART Study were considered as part of the project planning in developing publications for healthcare professionals aimed at raising awareness of the impact of endometriosis on women's lives, and clarifying the role of the Clinical Nurse Specialist in Endometriosis. The Royal College of Nursing’s (RCN) Women’s Forum worked in collaboration with Endometriosis UK and the British Society for Gynaecological Endoscopy (BSGE) to create:
- An information booklet aimed at nurses, midwives (and healthcare assistants) who have no specialism in women's health, but who are likely to come into contact with women who may have endometriosis. The booklet aims to increase awareness and understanding of the signs, symptoms, available treatment and prognosis, as well as the impact on quality of life for women with endometriosis.
- A document outlining the principles for skills development for the Clinical Nurse Specialist in Endometriosis, to help inform local job descriptions.
The ENDOPART study report was listed on the booklet as valuable resources for the nursing community. In addition, Dr Nicky Hudson delivered a presentation of study findings to 40 specialist nurses at the RCN Endometriosis Seminar and Launch Event in 2015.
In 2017, the Centre for Reproduction Research also provided evidence to the All-Party Parliamentary Group (APPG) on Women’s Health inquiry into whether women are given an informed choice about the treatment options available for endometriosis. Our response drew on our programme of work in endometriosis, and described research evidence relating to information provision for women with endometriosis, as well as barriers to diagnosis and effective treatment. It also highlighted the need for care and management to take a holistic, biopsychosocial approach and discussed issues of sex and intimacy, planning for an having children, the impact on adolescents, the impact on partners and ethnicity and culture. The evidence submitted was cited in numerous places in the final APPG report.
- Access the Centre’s evidence submission here
- Read the final APPG report ‘Informed Choice? Giving women control of their Healthcare’ here
In 2017 evidence from the ENDOPART study was cited in NICE’s draft guideline Endometriosis Diagnosis and Management. It was one of 17 studies reviewed and included in section 7 of the guideline focusing on information and support, and upon which recommendations were based. The Centre for Reproduction Research acted as a stakeholder in the guideline development, and reviewed and provided a response to the draft guideline. The final guideline is expected in September 2017.