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

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          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.

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          Most cited references52

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          Patient perspectives on the impact of fibromyalgia.

          The objective of this study was to elicit and assess important symptom domains and the impact of fibromyalgia on patients' quality of life and functioning from a patient's perspective. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia. This was a qualitative study in which six focus group sessions with 48 women diagnosed with fibromyalgia were conducted to elicit concepts and ideas to assess the impact of fibromyalgia on their lives. The focus groups conducted with fibromyalgia patients identified symptom domains that had the greatest impact on their quality of life including pain, sleep disturbance, fatigue, depression, anxiety, and cognitive impairment. Fibromyalgia had a substantial negative impact on social and occupational function. Patients reported disrupted relationships with family and friends, social isolation, reduced activities of daily living and leisure activities, avoidance of physical activity, and loss of career or inability to advance in careers or education. The findings from the focus groups revealed that fibromyalgia has a substantial negative impact on patients' lives. A comprehensive assessment of the multiple symptoms domains associated with fibromyalgia and the impact of fibromyalgia on multidimensional aspects of function should be a routine part of the care of fibromyalgia patients.
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            Is Open Access

            Clinical diagnosis of endometriosis: a call to action

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              Is Open Access

              The face of postural tachycardia syndrome – insights from a large cross‐sectional online community‐based survey

              Abstract Background Patients with postural tachycardia syndrome (POTS) experience chronic symptoms of orthostatic intolerance. There are minimal data detailing the demographics, clinical features and clinical course of this condition. This online, community‐based survey highlights patients’ experience with POTS. It consists of the largest sample of POTS patients reported to date. Objectives To describe the demographics, past medical history, medications, treatments and diagnostic journey for patients living with POTS. Methods Postural tachycardia syndrome patients completed an online, community‐based, cross‐sectional survey. Participants were excluded if they had not received a diagnosis of POTS from a physician. The questions focused on the patient experience and journey, rather than physiological responses. Results The final analysis included 4835 participants. POTS predominantly affects white (93%) females (94%) of childbearing age, with approximately half developing symptoms in adolescence (mode 14 years). POTS is a chronic multisystem disorder involving a broad array of symptoms, with many patients diagnosed with comorbidities in addition to POTS. POTS patients often experience lengthy delays [median (interquartile range) 24 (6–72) months] and misdiagnosis, but the diagnostic delay is improving. POTS patients can present with a myriad of symptoms most commonly including lightheadedness (99%), tachycardia (97%), presyncope (94%), headache (94%) and difficulty concentrating (94%). Conclusions These data provide important insights into the background, clinical features and diagnostic journey of patients suffering from POTS. These data should serve as an essential step for moving forward with future studies aimed at early and accurate diagnoses of these patients leading to appropriate treatments for their symptoms.
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                Author and article information

                Journal
                Womens Health Rep (New Rochelle)
                Womens Health Rep (New Rochelle)
                whr
                Women's Health Reports
                Mary Ann Liebert, Inc., publishers (140 Huguenot Street, 3rd Floor New Rochelle, NY 10801 USA )
                2688-4844
                12 September 2022
                2022
                12 September 2022
                : 3
                : 1
                : 749-758
                Affiliations
                [ 1 ]College of Healthcare Sciences, James Cook University, Townsville, Australia.
                [ 2 ]College of Arts, Society and Education, James Cook University, Smithfield, Australia.
                [ 3 ]Cairns Sexual Health Service, Cairns North, Australia.
                [ 4 ]Cairns and Hinterland Hospital and Health Service, Cairns, Australia.
                Author notes
                [*] [ * ]Address correspondence to: Lea Merone, MB, ChB, College of Healthcare Sciences, James Cook University, 383 Flinders Street, Townsville 4810, Australia, lea@ 123456doctors.org.uk
                Article
                10.1089/whr.2022.0040
                10.1089/whr.2022.0040
                9518795
                36185069
                d5aea4ef-3750-4de8-958b-6b0d2894333c
                © Lea Merone et al., 2022; Published by Mary Ann Liebert, Inc.

                This Open Access article is distributed under the terms of the Creative Commons License [CC-BY] ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : Accepted July 19, 2022
                Page count
                Figures: 2, Tables: 7, References: 59, Pages: 10
                Categories
                Original Article

                diagnosis,chronic conditions,women's health,misdiagnosis

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