Exploring experiences and support needs of women with endometriosis
Research type
Research Study
Full title
Exploring experiences, information, and support needs of those with endometriosis.
IRAS ID
302131
Contact name
Lucky Saraswat
Contact email
Sponsor organisation
NHS Grampian
Duration of Study in the UK
0 years, 4 months, 31 days
Research summary
Endometriosis is a long-term condition affecting 10% of women. It can be debilitating, and causes pelvic pain, painful periods or sex, infertility, and poor quality of life with a negative impact on relationships, education, and employment.
A need for laparoscopy (key-hole surgery) to confirm the diagnosis, lack of awareness, huge variation in symptoms, and social and cultural taboos around menstrual pain have led to delayed diagnosis (average 8 years in the UK), inequalities in care, repeated visits to healthcare professionals, and lack of provision of long-term support and care - issues which were also highlighted in a recent parliamentary report.
During the pandemic, with resources diverted to COVID care, those with endometriosis saw their treatments stopped, cancelled, or changed with very little warning, little information available and extremely limited access to clinicians (in primary or secondary care). A key issue in optimal management of endometriosis is the lack of awareness and tailored information and support.
We propose a study to explore the experiences and information and support needs of a diverse group of those with endometriosis during the pandemic. We will conduct semi-structured interviews with patients who have suspected or confirmed endometriosis to capture the experiences and encompass the range of symptoms and priorities of various sub-groups within endometriosis. We will seek to recruit from a wide range of demographics (age including adolescents, parity, social class and where possible different ethnic backgrounds) and with different symptoms of endometriosis (e.g., pain, infertility, or both). Data from the interviews will be used to develop a survey to explore variations in endometriosis care across the UK and impact on physical, social, and emotional health due to endometriosis during the pandemic. We will also capture information needs (format, accessibility, and content) related to diagnosis and management and support needs for those living with the condition.
Findings from this study will provide information that will be used to secure further funding to guide service design and develop an information and support package for those with endometriosis.REC name
London - South East Research Ethics Committee
REC reference
21/PR/1539
Date of REC Opinion
25 Nov 2021
REC opinion
Further Information Favourable Opinion