Supportive Care Needs of Young Adults With Endometriosis: An Open-Ended Online Survey and Exploration of Unmet Needs

Abstract

Objective: The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis.

Design: An open-ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains.

Setting and population: Self-selecting 18-25 year olds with surgically diagnosed endometriosis (self-reported) currently living in Australia were included as participants.

Methods: Invitation to participate in an open-ended online survey was shared through the social media of Australian endometriosis organisations and the Royal Women's Hospital, Melbourne. Surveys were analysed qualitatively through template analysis.

Main outcome measures: Recording of the unmet supportive care needs of this population was carried out.

Results: One hundred and thirty-one respondents fit the eligibility criteria of being aged 18-25 years (median age 23 years). Most were born in Australia (94%), university-educated (54%) and lived in a metropolitan setting (69%). There was a range of unmet needs that were presented across education, work, healthcare and relationships. Group-specific challenges were identified: doctors either over- or underemphasising future fertility; disrupted sexual and romantic life due to painful sex; managing pain in the classroom and workplace where periods are taboo; and being gender-queer in gynaecological medical spaces.

Conclusions: The increasingly young age at which patients are receiving an endometriosis diagnosis precipitates a shift in patient care. The treatment decisions that are being made must be reflective of the unique needs of the adolescents who carry the burden of the disease. Clinicians are advised to be aware of and discuss needs with their patients.

Patient or public contribution: The nine open-ended questions in this survey were developed from data from a preliminary series of interviews with endometriosis patients in a tertiary women's healthcare centre. In asking these data-informed questions to the online endometriosis community, patients across broader sociocultural demographics and disease states (including less symptomatic endometriosis) have provided a broader understanding of their supportive care needs.

Keywords: adolescent; dysmenorrhoea; dyspareunia; endometriosis; pelvic pain; quality of life; unmet needs.