Exploring challenges in decision making and cognitive functioning in endometriosis management

Endometriosis is a chronic inflammatory disease that affects 1 in 9 biological women of reproductive age in Australia, and can cause severe and chronic pain, and infertility. The ongoing pain has a marked effect on a person’s quality of life, hampering daily activities, sexual functioning, personal relationships, work and education. Treatments include drugs, surgeries, and therapeutic options, but all have downsides and need careful consideration. There is no gold-standard treatment, and fewer than 25 per cent of Australians with endometriosis are satisfied with how their condition is managed. Research also shows that people with endometriosis do not feel adequately informed about their condition, and report difficulties in communicating with healthcare professionals. Decision aids for a range of healthcare choices have been found to improve knowledge of a disease or condition, clarify a patient’s personal values, and encourage patients to take a more active role in decision-making with their physician, leading to reduced psychological conflict and reduced decisional regret. This study, through Macquarie University, will gather qualitative data from online focus groups with patients (N > 30), and online or phone interviews with healthcare professionals to identify the support needs of people when they are assessing endometriosis treatment options. Data will be thematically analysed using the template approach, guided by the six-stage inductive method. The results will inform a future project to develop a computerised co-designed decision aid for choosing endometriosis treatments. Participants will be biological women over the age of 18 who self-report as having endometriosis and who have access to the internet, and will be recruited via the social media pages of participating endometriosis consumer organisations. A range of healthcare professionals with a publicly expressed interest in endometriosis will be invited via email for an interview. The study has approval from Macquarie University's HREC Medical Sciences Committee (approval number: 520231301347117). Chief Investigator is Professor Kerry Sherman, and the student researcher is Lynda Fallon, a current Master of Research candidate. We are collaborating with a member of the Board of Endometriosis Australia and an Endometriosis Australia Ambassador.