Dismissal informs the priorities of endometriosis patients in New Zealand

Abstract

IntroductionEndometriosis is a common condition with average delays to diagnosis in New Zealand of almost 9 years.MethodsIn total, 50 endometriosis patients participated in anonymous, asynchronous, online group discussions about their priorities, and their experiences with the development of symptoms, seeking a diagnosis, and receiving appropriate treatment.ResultsHigher subsidy of care was the top change endometriosis patients wanted, followed by more research funding. When asked to choose whether research should be focused on improving diagnosis or improving treatment methods, the results were evenly split. Within this cohort, patients highlighted that they did not know the difference between normal menstrual discomfort and pathological endometriotic pain. If, upon seeking help, medical practitioners classified their symptoms as “normal,” these dismissals could instill doubt in patients, which made it more difficult for them to continue to seek a diagnosis and effective treatments. Patients who did not express dismissal had a significantly shorter delay from symptom onset to diagnosis of 4.6 ± 3.4 years vs. 9.0 ± 5.2 years.ConclusionDoubt is a frequent experience for endometriosis patients in New Zealand, which was reinforced by some medical practitioners who were dismissive of their pain and thus prolonged the patient's delay to diagnosis.

The Perspectives of Māori and Pasifika Mate Kirikōpū (Endometriosis) Patients in Aotearoa New Zealand

“…That study identified an average delay from symptom onset to surgically confirmed diagnosis of 8.6 years [2], consistent with a prior New Zealand report [7]. It was also identified that experiences of dismissal or doubt contributed significantly to the diagnostic delay (reports of dismissal increased the average delay from 4.6 ± 3.4 years to 9.0 ± 5.2 years (p = 0.0017)) [9]. Of available treatment methods, those most commonly prescribed by clinicians, such as hormone-based medications, were rarely viewed as effective by users [2].…”

“…In this study, participants took part in anonymous, asynchronous online text-based discussions on boards hosted on VisionsLive Ltd., (London, United Kingdom). The questionnaire from a 2022 qualitative study conducted with endometriosis patients in New Zealand [2,9] was adapted and streamlined for a cohort comprised of Māori and Pasifika patients to ensure that both cultural appropriateness and experiences unique to these cohorts would be addressed. The redesigned questionnaire was assessed by two Māori researchers (one of which is a person with endometriosis) and two Pasifika medical practitioners to ensure question wording and intent were valid for this context.…”

“…The primary source that both cohorts of patients first learnt of endometriosis was their doctors, with 51.9% of the Māori and 50.0% of Pasifika patients learning of endometriosis this way. In the 2022 study, only 22.0% of the cohort (n = 50) first heard of endometriosis through this source [9]. Only 7.4% of Māori patients and 10.0% of Pasifika patients learnt of endometriosis through online research about their symptoms in contrast to the prior study where 30% utilised this method.…”

“…Of available treatment methods, those most commonly prescribed by clinicians, such as hormone-based medications, were rarely viewed as effective by users [2]. Patients in the Societies 2024, 14, 46 2 of 21 study identified their priorities for changes in endometriosis care as follows: a higher provision of accessible, subsidised endometriosis care; increased research funding; better availability of public education to combat the long delay in diagnosis; and the perceived lack of effective treatment methods [9].…”

Endometriosis – a painful disease

“…For this, better education around menstrual health and what is ‘normal’ is vital. The impact of lack of knowledge of what is normal hugely impacts healthcare seeking and care received [56] and general lack of societal acceptance leads to loss of social connection [57].…”