Exploring endometriosis community needs to co-create the EndoZone digital health platform: a qualitative research study

Background: Endometriosis is a chronic inflammatory condition that is associated with painful periods and a variety of co-morbid symptoms for 10% of women and people presumed female at birth globally and upto 14% in Australia. Poor community and medical endometriosis awareness commonly leads to the normalisation of symptoms and dismissal of diagnostic or treatment needs. Community members often search for endometriosis information online. We explored the digital needs of those affected by endometriosis to support the co-creation of EndoZone, an evidence-based platform. 

Methods: Thirty-six people participated in eight semi-structured focus group discussions conducted across Australia between March–May 2020. One was conducted face-to-face and the remaining focus groups were conducted online via Zoom conferencing due to the COVID-19 lockdown. Those living with endometriosis (young group aged 16–18 years [n = 9] and the adult group aged ≥ 19 years [n = 19]) and their supporters (parents and partners aged ≥ 18 years (n = 8)) were invited to participate in the focus groups. The discussions were audio-recorded and transcribed verbatim. Transcripts were thoroughly checked for accuracy. Meaningful codes were extracted and categorised using NVIVO 12 software through a thematic analysis approach. Categories were clustered into meaningful themes. 

Results: The mean duration of focus groups was 1 h 55 min. The average age of those experiencing endometriosis and pelvic pain symptoms was 26.8 years, while the average age of supporters was 39.7 years. Participants primarily lived in major cities (53.6% - those experiencing endometriosis symptoms; 75% - supporters). Three main themes were identified: the need for (1) a central hub of endometriosis information (2), holistic strategies for symptom management and overall wellbeing, and (3) unique features to support the digital user experience. 

Conclusion: This study demonstrated the value for an evidence-based digital platform for endometriosis in the Australian community. It was identified that different groups such as adolescents, young adults and supporters such as parents and partners, have unique and varied information needs. A digital platform that caters to these needs should incorporate unique tailoring approaches appropriate for each group, providing just-in-time information to manage acute pain episodes and creating a digital endometriosis community network. 

Trial registration: N/A.