Exploring the Physical, Psychological and Social Needs of Women with Endometriosis
Endometriosis is a chronic gynaecological condition that causes pain and infertility and can have a significant impact on the physical, psychological and social wellbeing of women. Our overall aim is to develop a survey for women with endometriosis that will measure the things they need to improve their wellbeing – their unmet needs. If unmet needs can be measured, targeted interventions can be designed to meet these needs, and ultimately improve quality of life. This will be the first unmet needs survey to be developed for women with endometriosis.
A review of the unmet needs surveys in other health conditions showed that most used a systematic approach in the development of survey questions and instrument validation. Most studies described a process involving input from experts in the field, qualitative research (individual interviews or focus groups) and psychometric testing. The differences between unmet needs surveys developed for different populations show that, when developing an instrument for a new population, a systematic approach that includes exploratory qualitative research is necessary.
The EndoNeeds project was initiated to identify and quantify the physical, psychological and social needs of women with endometriosis through the development of an online unmet needs survey for this population. The project consists of three phases:
Dr Michelle Peate (behavioural scientist) Dr Jane Girling (reproductive biologist) Emma Steele (researcher) Dr Angela Chia (pain specialist) Dr Martin Healey (gynaecologist) Dr Uri Dior (gynaecology fellow) A/Prof John McBain (fertility specialist) Dr Vanessa Hughes (reproductive endocrinology and fertility fellow) A/Prof Christina Bryant (clinical psychologist) Lora Adamson (chronic pelvic pain clinic nurse) Anne-Florence Plante (women’s physiotherapist) Jessica Panetta (patient) Emma Schafer (patient) Ross Panetta (father of patient)