The missed disease? Endometriosis as an example of ‘undone science’

Hudson, Nicky

doi:10.1016/j.rbms.2021.07.003

Cited by 49 publications

(30 citation statements)

References 45 publications

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“…Our analysis of the data revealed a phenomenon in women with a longDD, which has already been discussed in qualitative interviews: one possible explanation is that the young age of the affected women at the onset of endometriosis symptoms means that they lacked the knowledge to differentiate between normal and abnormal menstrual experiences, which could lead them to misjudge the relevance of their symptoms [ 10 , 46 , 47 ]. For pubertal and adolescent girls, the most important and often the only sources of information are friends and family members, who often tend to normalize, play down and trivialize their menstrual irregularities and view them as “bad luck” or “fate”, partly based on their own experiences [ 10 , 39 , 48 ]. In case of a young age at onset of endometriosis symptoms, a young female’s healthcare access is strongly dependent on her parents or guardians and their recognition that the symptoms require medical attention.…”

Section: Discussionmentioning

confidence: 99%

Cross-sectional study for derivation of a cut-off value for identification of an early versus delayed diagnosis of endometriosis based on analytical and descriptive research methods

Brandes

Kleine-Budde²,

Heinze

et al. 2022

BMC Women's Health

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Background Endometriosis is a benign, hormone-dependent, chronic inflammatory gynecological disease accompanied by cyclic and acyclic pelvic pain and other complaints. The long lists of research recommendations in the AWMF guideline (Burghaus et al., Geburtshilfe Frauenheilkd 81:422–46, 2021) and ESHRE Endometriosis Guideline (ESHRE Endometriosis Guideline Development Group, Endometriosis: Guideline of European Society of Human Reproduction and Embryology, 2022) show that there is still a great need for research in all aspects of the disease. Diagnostic delay, defined as the mean time between symptom onset and confirmed diagnosis, is a particular problem associated with endometriosis. Some quantitative and qualitative studies have investigated possible reasons for this. A range of physician-related (Dixon et al., Br J Gen Pract 71:e668-e676, 2021; van der Zanden and Nap, Reprod Biomed Online 32:527–31, 2016) and patient-related factors (Sayer-Jones and Sherman, Health Psychol Behav Med 9:456–79, 2021) as well as stigmatization of the topic of menstruation by society have been identified (Kruckenberg, Frauenarzt 59:2–5, 2018; Seear, Soc Sci Med 69:1220–7, 2009). The consequences of the disease being diagnosed late (or too late) on the course of disease, the quality of life and the costs of the disease have already been documented in studies (Sims Int J Environ Res Public Health 18(15):8210, 2021; Surrey Adv Ther 37:1087–99, 2020). However, a systematically derived cut-off value that clearly distinguishes between short and long delay is still lacking. Therefore, the aim of our study was to derive a threshold value for the definition of a target corridor for endometriosis diagnosis based on descriptive and analytical methods. Methods Since our review of the rather sparse publications on diagnostic delay did not yield satisfactory results, we used descriptive statistics and location parameters to calculate a cut-off value for German population data from the EndoCost study. Statistical methods were used for correlation analysis of shortDD versus longDD (correlation analysis and logistic regression) and group membership (discriminant analysis). Results Five years was identified as the cut-off value that significantly differentiated between shortDD and longDD based on various disease-related variables. This suggests that endometriosis should be definitively diagnosed within less than five years to minimize the risk of an unfavorable course of the disease. Conclusion Our findings confirmed that an early onset of endometriosis-related symptoms is the most important risk factor for a long diagnostic delay. Consequently, adolescent females should receive increased attention as an especially vulnerable group. Evidently, there is an urgent need to develop adequate concepts to improve the endometriosis education and care among this target group.

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Section: Discussionmentioning

confidence: 99%

Cross-sectional study for derivation of a cut-off value for identification of an early versus delayed diagnosis of endometriosis based on analytical and descriptive research methods

Brandes

Kleine-Budde²,

Heinze

et al. 2022

BMC Women's Health

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“…There is a well-established delay from symptom onset to diagnosis of 4–11 years for endometriosis patients ( 1 ). There are many reasons for this delay, including the lack of a unique symptom profile ( 27 ), the variety of symptoms ( 28 ) and large waitlists for the laparoscopies used to diagnose endometriosis ( 2 ). Many patients find it necessary to “doctor shop” to find a medical practitioner who will support their efforts to obtain an endometriosis diagnosis.…”

Section: Symptom Burdenmentioning

confidence: 99%

Endometriosis Is Undervalued: A Call to Action

Ellis

Munro

Clarke

2022

Front. Glob. Womens Health

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Endometriosis is an inflammatory chronic pain condition caused by uterine tissue growing outside of the uterus that afflicts at least 11% of women (and people assigned female at birth) worldwide. This condition results in a substantial burden to these women, and society at large. Although endometriosis was first identified over 160 years ago, substantial knowledge gaps remain, including confirmation of the disease's etiology. Research funding for endometriosis is limited, with funding from bodies like the National Institutes of Health (NIH) constituting only 0.038% of the 2022 health budget—for a condition that affects 6.5 million women in the US alone and over 190 million worldwide. A major issue is that diagnosis of endometriosis is frequently delayed because surgery is required to histologically confirm the diagnosis. This delay increases symptom intensity, the risk of central and peripheral sensitization and the costs of the disease for the patient and their nation. Current conservative treatments of presumed endometriosis are pain management and birth control. Both of these methods are flawed and can be entirely ineffective for the reduction of patient suffering or improving ability to work, and neither addresses the severe infertility issues or higher risk of certain cancers. Endometriosis research deserves the funding and attention that befits a disease with its substantial prevalence, effects, and economic costs. This funding could improve patient outcomes by introducing less invasive and more timely methods for diagnosis and treatment, including options such as novel biomarkers, nanomedicine, and microbiome alterations.

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“…Our analysis of the data revealed a phenomenon in women with a longDD, which has already been discussed in qualitative interviews: one possible explanation is that the young age of the affected women at the onset of endometriosis symptoms means that they lacked the knowledge to differentiate between normal and abnormal menstrual experiences, which could lead them to misjudge the relevance of their symptoms [12,48,49]. For pubertal and adolescent girls, the most important and often the only sources of information are friends and family members, who often tend to normalize, play down and trivialize their menstrual irregularities and view them as "bad luck" or "fate", partly based on their own experiences [12,41,50]. In case of a young age at onset of endometriosis symptoms, a young female's healthcare access is strongly dependent on her parents or guardians and their recognition that the symptoms require medical attention.…”

Section: Characteristics Of Group Differencesmentioning

confidence: 99%

Cross-sectional study for derivation of a cut-off value for identification of a timely versus late diagnosis of endometriosis based on analytical and descriptive research methods

Brandes

Kleine-Budde

Heinze

et al. 2022

Preprint

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BackgroundEndometriosis is a benign, hormone-dependent, chronic inflammatory gynecological disease accompanied by cyclic and acyclic pelvic pain and other complaints. The long lists of research recommendations in the AWMF guideline [5] and ESHRE Endometriosis Guideline [6] show that there is still a great need for research in all aspects of the disease. Diagnostic delay, defined as the mean time between symptom onset and confirmed diagnosis, is a particular problem associated with endometriosis. Some quantitative and qualitative studies have investigated possible reasons for this. A range of physician-related [7, 8] and patient-related factors [9] as well as stigmatization of the topic of menstruation by society have been identified [10, 11]. The consequences of the disease being diagnosed late (or too late) on the course of disease, the quality of life and the costs of the disease have already been documented in studies [12, 13]. However, a systematically derived cut-off value that clearly distinguishes between short and long delay is still lacking. Therefore, the aim of our study was to derive a threshold value for the definition of a target corridor for endometriosis diagnosis based on descriptive and analytical methods.MethodsSince our review of the rather sparse publications on diagnostic delay did not yield satisfactory results, we used descriptive statistics and location parameters to calculate a cut-off value for German population data from the EndoCost study. Statistical methods were used for correlation analysis of shortDD versus longDD (correlation analysis and logistic regression) and group membership (discriminant analysis). ResultsFive years was identified as the cut-off value that significantly differentiated between shortDD and longDD based on various disease-related variables. This suggests that endometriosis should be definitively diagnosed within less than five years to minimize the risk of an unfavorable course of the disease. Our findings confirmed that an early onset of endometriosis-related symptoms is the most important risk factor for a long diagnostic delay. Consequently, adolescent females should receive increased attention as an especially vulnerable group. Evidently, there is an urgent need to develop adequate concepts to improve the endometriosis education and care among this target group.

show abstract

The missed disease? Endometriosis as an example of ‘undone science’

Cited by 49 publications

References 45 publications

Cross-sectional study for derivation of a cut-off value for identification of an early versus delayed diagnosis of endometriosis based on analytical and descriptive research methods

Cross-sectional study for derivation of a cut-off value for identification of an early versus delayed diagnosis of endometriosis based on analytical and descriptive research methods

Endometriosis Is Undervalued: A Call to Action

Cross-sectional study for derivation of a cut-off value for identification of a timely versus late diagnosis of endometriosis based on analytical and descriptive research methods

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