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

Abstract

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.

Living With Endometriosis: A Reflexive Thematic Analysis Examining Women’s Experiences With the Irish Healthcare Services

“…The Irish experiences detailed in our findings add weight to previous literature regarding dissatisfaction with support offered by healthcare professionals (Lukas et al, 2018) and variation in treatments offered (Pettersson and Berterö, 2020). Further, the commonly reported feeling of being 'let down' by healthcare services in Ireland echoed experiences of women in the Australian context (Evans et al, 2021). These findings also support those of Dancet et al (2014) which reported difficulties in accessing care, the need for improved information and education surrounding diagnosis and treatment, and more medical training and expert surgeons.…”

“…Rowe et al (2021) further recommends longer-term care planning and a collaborative approach to care incorporating women's selfknowledge and expertise. Evans et al (2021) echoed many of the above points, adding that women with endometriosis felt "Let down" by doctors as a result of experiencing medical gaslighting and needed to fight to be heard (p. 2099). Sbaffi and King (2020) published the only study on endometriosis to date that includes Irish women.…”

Lessons from implementing the Australian National Action Plan for Endometriosis

“…The solo-provider model has been associated with persisting symptoms, long delays in diagnosis, repeated surgeries and low care satisfaction ( Agarwal et al 2021 ). As few as 24% of Australian women with endometriosis are satisfied with the management of their condition, with barriers to accessing interdisciplinary care that addresses functioning beyond infertility and pain one of the main reasons for dissatisfaction ( Evans et al 2021 ).…”

“…Given the ongoing challenges of pain and symptom management, it is perhaps unsurprising that many people are choosing to engage in self-management ( Armour et al 2019 c , O’Hara et al 2020 ) with as many as 89% of Australian women with endometriosis using complementary and self-care approaches to manage pain ( Evans et al 2021 ). People with endometriosis often need to seek regular care from general practitioners, medical specialists (e.g.…”

“…However, this varies depending on access to gynaecology services, and in some rural or remote locations, the majority of care may be provided by the GP. There is currently a lack of information on the pathways via which those with endometriosis access the Australian healthcare system but people with endometriosis report often having to see several general practitioners and gynaecologists prior to getting diagnosis and treatment for their endometriosis ( Armour et al 2020 b , Evans et al 2021 , Hawkey et al 2022 ).…”