Research priorities of endometriosis patients and supporters in Aotearoa New Zealand

Abstract

Background: In New Zealand, an estimated 10% of women and people presumed female at birth have endometriosis, a disease characterised by the presence of tissue similar to the lining of the uterus, outside of the uterus.

Aims: The purpose of this study was to characterise the research priorities of New Zealand endometriosis patients and their support networks in alignment with an Australian study. This will allow researchers to be able to ensure their research aligns with closing research gaps prioritised by those who directly experience the impacts of the disease.

Methods and materials: There were 1262 responses to an online Qualtrics survey advertised through Endometriosis New Zealand's social media accounts and mailing list to reach endometriosis patients and their support networks.

Results: Overall, the highest research priorities for surgically or radiologically confirmed endometriosis patients, clinically suspected endometriosis patients, chronic pelvic pain patients, and their parents, partners, family members and friends were the management and treatment of endometriosis, followed by understanding endometriosis' cause, and improved capacity to diagnose endometriosis earlier. The key differences between the priorities of symptomatic participants and supporters were that symptomatic participants placed a significantly higher priority on understanding the cause of endometriosis, and supporters placed a significantly higher priority on improving the diagnosis of endometriosis.

Conclusions: There is alignment between the ranking of general research priority areas for endometriosis in Australasia, allowing for clear priorities for future research teams to structure their work around patient-centredness.

Keywords: New Zealand; chronic pain; endometriosis; patient priorities; research priorities.

Figure 1

Plot of open‐ended top research priority results. Outer pie segments are sub‐topics of the inner pie segments. White sections are ‘other’ priorities or sub‐topics.

Figure 2

Violin plots showing the distribution of ranking votes for the (a) general research priorities where ‘1’ is top priority and ‘5’ is lowest priority and (b) specific research priorities showing median (black line) and interquartile range (black dotted lines) where ‘1’ is top priority and ‘11’ is lowest priority.