Self-Reported Time to Diagnosis and Proportions of Rediagnosis in Female Patients with Chronic Conditions in Australia: A Cross-sectional Survey

Abstract

Background: The diagnosis of chronic conditions in women is complicated by the historical androcentricity in medical research. Sex and gender gaps in health research may translate to unequal healthcare for women. This cross-sectional survey study aimed to ascertain the median time to diagnosis, proportions of rediagnosis and time to rediagnosis for Australian women with chronic conditions. Methods: An online survey collected anonymous data from voluntary participants. Data were analyzed using Stata14. Cox Proportional Hazards model was used to analyze time to diagnosis and rediagnosis. Logistic regression analysis was used to assess the significance of rediagnosis rates by diagnosis, age at diagnosis, income, employment, state of residence, disability status, and Indigenous status. Results: The median time from first appointment to initial diagnosis was 6 months (range 1 day–50 years) (interquartile range [IQR] 3.74 years). The median time to rediagnosis was 4 years (IQR 9) with a range of 1 day–43 years. Almost half of the women ( n = 161/343, 47%) reported their primary condition being rediagnosed. From the complete responses, 40% were rediagnosed from one organic condition to another organic condition, however, 32% of women originally diagnosed with psychological, medically unexplained syndromes, or chronic pain were later rediagnosed with organic conditions. Conclusion: Median wait times for a diagnosis for women in Australia, when factoring in high rates of rediagnosis and time to rediagnosis, was 4 years. It is important that clinicians are aware of the high rediagnosis rates in female patients with chronic conditions and understand the potential impact of systemic biases on the diagnostic process for women under their care.

“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia

“…This finding was supported by a recent (2022) survey of Australian women with chronic conditions, wherein almost half of the women reported being rediagnosed on at least one occasion. 14 Misdiagnosis and rediagnosis may contribute to longer waiting times for an ultimate diagnosis, delays in treatment, and progression of the chronic condition. 14 …”

“… 14 Misdiagnosis and rediagnosis may contribute to longer waiting times for an ultimate diagnosis, delays in treatment, and progression of the chronic condition. 14 …”

“…Women were recruited via social media. As per a recent survey analysis, 14 the study was advertised using relevant hashtags and notices in appropriate Australian chronic conditions support groups, including: chronic pain; endometriosis; lupus; fibromyalgia; general chronic disease; irritable bowel syndrome (IBS); autoimmune disease; heart disease; depression; anxiety; Ehlers–Danlos syndrome (EDS); cancer; asthma; diabetes; postural orthostatic tachycardia syndrome (POTS), and many more. Interested participants were required to voluntarily contact the principal researcher and following provision of the information material and informed consent, were recruited to the study.…”

“…A recent survey of women with chronic conditions in Australia demonstrated women wait an average of 4 years for a definitive diagnosis and almost half of these women are rediagnosed at least once. 14 This survey ascertained that of the women who were rediagnosed, 32% were originally given a diagnosis of a psychological or MUS and later rediagnosed with an organic condition. 14 Women are notably more likely than men to be dismissed or told their symptoms are “in their head” before a diagnosis of organic disease is made.…”

“… 14 This survey ascertained that of the women who were rediagnosed, 32% were originally given a diagnosis of a psychological or MUS and later rediagnosed with an organic condition. 14 Women are notably more likely than men to be dismissed or told their symptoms are “in their head” before a diagnosis of organic disease is made. 15 Despite noting gaps in women's research and health care, little research has been conducted to capture the experiences of women with chronic conditions in the Australian health care system.…”