Treatment use and satisfaction in Australian women with endometriosis: a mixed-methods study

Aims To document the frequency of conventional and complementary treatments used by Australian women with endometriosis and the perceived efficacy of these treatments, and to qualitatively explore women's treatment satisfaction. Background We do not adequately understand whether Australian women with endometriosis are satisfied with their medical care. Methods Using a mixed-methods design, 532 women with self-reported endometriosis were recruited from the community. Participants were asked about their medication, complementary and self-care treatment use, as well as perceived efficacy on a 0 (not effective) to 10 (extremely effective) numeric rating scale, and open-ended qualitative survey items about treatment satisfaction. Results Ninety-seven percent of women used medication for pain relief (mean perceived efficacy = 5.05) and 89% used complementary/self-care strategies (mean perceived efficacy = 3.70), with medication rated as significantly more effective (P < 0.001). Content analysis of the qualitative data identified that 36% of women were dissatisfied with treatment, 34% were somewhat satisfied and 24% were satisfied. We identified qualitative themes relating to: (i) barriers to treatment, which included lack of access, stigma and disappointment with medical professionals who were perceived as uncaring, unhelpful and, in some cases, psychologically damaging; (ii) the need for holistic, interdisciplinary care; and (iii) patient knowledge, advocacy and resilience in endometriosis management. Conclusions Our findings reveal important limitations in the current Australian healthcare model, including the need for patient-centred interdisciplinary care that treats the biopsychosocial needs of people with endometriosis, and widespread pain education, spanning medical training to community awareness.