The impact of diagnostic method on sense of control and powerlessness and social support in endometriosis patients—A retrospective cohort study

All authors contributed to the conceptualization of the study. ML and MA conducted the original study from which these data were taken. AE conducted the statistical analysis. MA, AE, and CH drafted the manuscript. MA and ML provided critique of the manuscript and overall guidance as senior authors. All authors reviewed and approved the final version of the manuscript.

A total of 1634 valid responses were received. Table  1 displays the demographic data of survey respondents. The mean age of respondents was 30.7 ± 7.1 years, with a median of 4 years (interquartile range 7) since diagnosis and a mean age at diagnosis of 25 ± 6.8 years old. Demographics data by diagnostic method ( n  = 1634) Note : Other diagnostic methods include incidental finding of endometriosis during surgery for a different indication, diagnosis by a combination of methods, and incidental finding of endometriosis on biopsy for a different indication. Abbreviations: HCP, healthcare provider; IQR, interquartile range; MRI, magnetic resonance imaging; SD, standard deviation. The control and powerlessness dimension score was statistically significantly higher when diagnosis was made through imaging (mean 77.8 ± 19.6) compared with being told by their healthcare provider they have endometriosis (mean 72.5 ± 21.5), mean difference 5.27 (95% confidence interval [CI] 0.01–10.54, p  = 0.049). However, when age, years since diagnosis, country, and education were added as covariates this difference was no longer significant in the adjusted means (4.92, 95% CI –0.08 to 9.92, p  = 0.054). Similarly adjusted differences between surgery and imaging (2.56, 95% CI –1.19 to 6.31, p  = 0.18), and surgery and being told by a healthcare provider (2.36, 95% CI –1.26 to 5.98, p  = 0.20) were not significant. When examining the effect of the diagnostic method on social support dimension scores there was no significant difference between any of the adjusted means, imaging vs healthcare provider (–0.78, 95% CI –6.09 to 4.54), surgery vs imaging (–2.36, 95% CI –6.35 to 1.63), or surgery vs healthcare provider 1.58 (95% CI –2.28 to 5.45). There was a statistically significant effect of country on the method of diagnosis ( p  < 0.0001). Surgery is by far the most common method of diagnosis broadly, but the following countries have the highest rate of surgery as the diagnostic method: Australia (85.9%), USA (85.5%), and New Zealand (85.3%). Canada and Ireland have significantly higher rates of clinical diagnosis (10.5% and 13.6%, respectively). Those from “other” countries (Appendix  S1 ) had the highest rate of imaging diagnosis (26%) compared with the remaining countries, where diagnostic imaging was relatively uncommon.

This large international retrospective cohort study found that the method of diagnosis does not appear to have a significant impact on feelings of control over the disease nor reduce the feelings of social support for individuals living with endometriosis. There was weak evidence of a higher EHP‐30 control and powerlessness score, meaning a worse experience in the dimensions of control and powerlessness , for those who received a clinical diagnosis from their healthcare provider compared with those diagnosed by diagnostic imaging (ultrasound or MRI). However, this difference was below the threshold of a clinically significant change determined by Jones et al. 20 There was no evidence of a difference in EHP‐30 control and powerlessness score for any of the other comparisons, including diagnostic laparoscopy vs diagnostic imaging and clinical diagnosis vs diagnostic laparoscopy. In terms of our secondary outcomes, there was no evidence of a difference in EHP‐30 social support score for any diagnostic method (diagnostic laparoscopy, diagnostic imaging, or clinical diagnosis); however, there was a strong, significant association between country and diagnostic method, suggesting that adoption of various diagnostic methods differs by country. Previous research has proven that receiving a diagnosis of endometriosis is paramount for emotional well‐being and access to social supports. 7 , 13 Specifically, women with endometriosis have reported the experience of receiving a diagnosis as liberating and empowering, 21 whereas their interactions with the healthcare system before diagnosis led to feelings of powerlessness 22 and worthlessness. 8 Our results indicate that although having a diagnosis is beneficial for these psychosocial factors, the diagnostic method itself does not appear to play a key role. This is primarily supported by the lack of clinical significance found in the comparison of control and powerlessness scores between clinical diagnosis and diagnosis based on diagnostic imaging. This result is further reinforced by the fact that there was no difference found between these scores for those diagnosed with a clinical diagnosis vs diagnosis by diagnostic laparoscopy. If direct visualization of endometriosis were an important factor in determining one's feelings of control over the disease, we would expect to see similar or stronger results in the latter comparison. Receiving a formal diagnosis of endometriosis acts as a gatekeeper for accessing support services and provides women with a language with which to explain their symptoms to friends, family, and co‐workers. 7 The medical label legitimizes absences from work and social events, so repairing relationships with those that were previously unsympathetic. 7 Diagnosis itself is an important barrier in addressing these concerns, but our results do not indicate that the method of diagnosis carries any impact on the extent to which people feel they have sufficient access to social supports. That said, there are clear differences in the diagnostic potential of diagnostic test methods and significant operator‐ or provider‐dependent accuracies that should be considered in the diagnostic journey of the patient. 12 Additionally, the significant association found between diagnostic method and country suggests heterogeneity in accessibility, training, and acceptance of different methods, which is supported in the literature. 19 Improving training and expertise internationally in non‐invasive diagnostic methods such as ultrasound has the potential to improve patient care by reducing time to diagnosis through improved accessibility and reducing surgical risks. Further, our findings indicate that patients with a clinical diagnosis of endometriosis can discuss medical, surgical, and complementary treatment options with their doctor without requiring a diagnosis by imaging or surgery, without impacting the psychosocial aspects of the disease. The strengths of this study include the considerable sample size and the international scope of the sample, yielding results that are generalizable to a broad range of cultures and medical systems. However, there are some limitations that must be acknowledged. First, our original survey looked at changes in symptom management during COVID‐19 and discussed medicinal cannabis; however, only 50% of those who responded to the survey used medicinal cannabis and although it was not a requirement to participate, this may have led to some not wishing to participate. Second, our original study only used electronic recruitment, which would have excluded those without access to the internet or electronic devices, those that do not use social media, and those that cannot read or write English, reducing the generalizability of our data, especially to non‐English‐speaking countries. Third, recruitment from online sources such as social media support groups tend to have more severe symptoms than those recruited in the community. 23 Fourth, there are many potential confounding variables that were not controlled for in our analysis, including comorbid mental health conditions and number of years since receiving a diagnosis. Historic and current limitations of various diagnostic tests, including imaging for superficial endometriosis, may also be playing a role. 11 One weakness was that participants were only able to select one response on the survey regarding diagnostic method. Although some participants selected “other” and entered more than one diagnostic method in the text entry box, others likely simply chose their final diagnostic method. On the other hand, although we did not specify this in the survey, we believe it is safe to assume that in most cases, a clinical diagnosis based on symptoms usually implies that medical therapy is offered at that time. A common theme in endometriosis research is the difficulty separating diagnosis from treatment and the individual effects of these two aspects of medical care. Just as a diagnostic laparoscopy with treatment of endometriosis would likely impart a different therapeutic value from a diagnostic laparoscopy alone, clinical diagnosis with and without empirical treatment would likely yield a different impact on a person's experience. The time at which the questionnaire is completed (potentially many years following diagnosis) may not be entirely reflective of the therapeutic effect of receiving a diagnosis, with potentially diminishing effect on these EHP‐30 domains with an increased time interval between diagnosis and the present. Finally, results could be affected by the fact that surgical diagnosis often coincides with surgical treatment, which is not incorporated in the other diagnostic methods.

The results of this study indicate that the diagnostic method of endometriosis does not appear to have a clinically significant impact on person's sense of control over their disease nor their access to social support. However, there may have been a number of years since diagnosis for many respondents and so this may not reflect how they felt at the time of diagnosis itself. The results and identification of study limitations should enhance future research done in this area, which is certainly warranted as the true impact diagnosis and the diagnostic methods in endometriosis are unknown.

Endometriosis is a chronic inflammatory condition estimated to affect up to 10% of women. 1 , 2 It is defined as the attachment and implantation of endometrial‐like tissue outside the uterus; however, the etiology is not well understood. 3 The clinical presentation of endometriosis is heterogeneous, although classic signs and symptoms can include dysmenorrhea, deep dyspareunia, dyschezia, chronic pelvic pain, and infertility. 4 Although these physical symptoms are the most reported concerns of patients with endometriosis, there is also a significant psychosocial component. Many patients experience symptoms such as diminished quality of life, increased rates of depression, negative effects on relationships, and anxiety. 5 , 6 The diagnosis of endometriosis is made challenging by nonspecific and heterogeneous symptoms, a lack of pathognomonic features, 5 and the normalization and dismissal of pelvic pain by patients and physicians. 7 , 8 The reference standard was previously diagnostic laparoscopy and histological assessment; 2 however, recent guidelines from the European Society of Human Reproduction and Embryology recommend that imaging with ultrasound or MRI should be the first line of investigation, 9 with particular accuracy for deep endometriosis. 10 Although diagnostic laparoscopy remains a common method of diagnosis internationally, and is still superior for diagnosis of superficial endometriosis compared with imaging, 11 many individuals receive a presumptive clinical diagnosis based on symptoms or a non‐invasive radiological diagnosis using tools such as ultrasound or MRI. 4 , 11 The approach to diagnosing endometriosis is controversial, variable, and dependent on regional factors but it is clear that each diagnostic test modality has strengths and limitations that must be considered. 12 There is evidence to support that receiving a diagnosis equips patients with a sense of control over their condition and acts as a gatekeeper to accessing social supports. 7 , 13 Before receiving a diagnosis, individuals report feelings of fear, self‐doubt, a lack of understanding from others, and difficulties explaining their absences from work and social events. 7 , 13 Diagnosis provides patients with the language with which to speak about their symptoms, legitimizes their pain, and offers hope for treatment options. 7 , 13 Although laparoscopy is no longer considered necessary if radiological diagnostic methods achieve a diagnosis, this reputation of laparoscopy as the reference standard may persist among the patient community, and thus influence perceptions of the diagnostic method. Despite the obvious benefits of a diagnosis, those who receive a clinical or imaging diagnosis may not receive the same support from others, feel the same sense of validation, or feel as in control of their symptoms as those that have a laparoscopic diagnosis. The primary objective of this study is to determine the impact of the diagnostic test method (clinical, diagnostic imaging, or diagnostic laparoscopy) of endometriosis on the person's sense of control over their disease. The secondary objectives were to identify the impact of the diagnostic method on perceived social support, and to explore if there was a difference in the diagnostic method utilization between countries.

ML reports grants from Endometriosis Australia, AbbVie, CanSAGE, MRFF, HHS, Health Canada, Hyivy; honoraria for lectures/writing from GE Healthcare, Bayer, AbbVie, TerSera, consulting fees from Imagendo, Hologic, outside the submitted work. MA is chair of the Endometriosis Australia research committee, chair of the Endometriosis Australia Clinical Advisory Committee, and has received funding from Metagenics outside the submitted work. Other authors have no disclosures.

This study reports on data collected by the Endometriosis Health Profile‐30 (EHP‐30) section of a previously published survey that focused on endometriosis management during COVID‐19. 14 This survey was hosted on the Qualtrics platform (Qualtrics Ltd). The survey took approximately 15–30 minutes to complete. The survey was open for 8 weeks between mid‐May 2020 until mid‐July 2020. People were eligible to participate if they had been told by their medical doctor that they had endometriosis and were aged between 18 and 55 years. Recruitment was conducted through the social media platforms of the largest endometriosis support and advocacy groups worldwide, including the World Endometriosis Organization, Centre for Endometriosis Research, Endometriosis Ireland, The Endometriosis Network Canada, Endometriosis NZ, Endometriosis Australia, and Nancy's Nook. At the time of the survey, there were approximately 95 000 combined followers of these groups on social media, with some followers being likely to be common between groups and others not having endometriosis, but rather being a family member or friend of an endometriosis patient. Features were enabled within Qualtrics that prevented multiple completions from either a single IP address or the same computer to reduce duplicate entries. No direct contact occurred between respondents and the research team. No power calculation was performed because of the nature of the original study. Sample size was set by the amount of time the survey was left open. The achieved sample size of 120 per group has 80% power to detect an effect size of 0.4. The survey was designed by the research team including gynecologists as well as academics with expertise in the areas of endometriosis, and menstrual health. Demographic information including age, country, endometriosis symptoms, diagnostic approach and current management approaches were collected. Diagnostic methods included clinical diagnosis, meaning a diagnosis based on patient‐reported symptoms, radiological diagnosis with ultrasound or MRI, and surgical diagnosis with diagnostic laparoscopy. Only one diagnostic method could be selected. The survey was pilot tested by lay people both with and without endometriosis, and modifications to wording and question flow were made based on their feedback. This study reports on the data collected with the EHP‐30 section of the survey, a 30‐item validated patient self‐reported outcome that assesses health‐related quality of life in people with endometriosis across five dimensions—pain, control and powerlessness, emotional well‐being, social support, and self‐image. 15 , 16 The EHP‐30 is well recognized to be a valid self‐report measure in people with endometriosis, 17 has strong cross‐cultural validity, 18 and when used in cross‐sectional studies, such as this one, is responsive to change in symptom severity, with more severe symptoms resulting in lower EHP‐30 scores. 19 Each question is answered on a five‐point Likert scale ranging from never to always and uses a 4‐week recall period. The dimension is scored from 0 to 100 with a higher score indicating a worse health status. The two dimensions of interest were: Control and powerlessness dimension, comprising the following questions: During the last 4 weeks, how often because of your endometriosis have you… Generally felt unwell Felt frustrated as symptoms not getting better Felt frustrated as not able to control symptoms Felt unable to forget symptoms Felt symptoms ruling your life Felt symptoms taking away life 2 Social support dimension comprising the following questions: During the last 4 weeks, how often because of your endometriosis have you… Felt unable to tell people how you feel Felt alone Felt others do not understand what you are going through Felt as though others think you are moaning Control and powerlessness dimension, comprising the following questions: During the last 4 weeks, how often because of your endometriosis have you… Generally felt unwell Felt frustrated as symptoms not getting better Felt frustrated as not able to control symptoms Felt unable to forget symptoms Felt symptoms ruling your life Felt symptoms taking away life Social support dimension comprising the following questions: During the last 4 weeks, how often because of your endometriosis have you… Felt unable to tell people how you feel Felt alone Felt others do not understand what you are going through Felt as though others think you are moaning The individual scores of the dimensions of interest, control and powerlessness and social support were calculated as per the formula in the EHP‐30 scoring guide: Sum of the scores for each item in the dimension / 4(ie, maximum score per item) × Number of items in the dimension. Therefore, the control and powerlessness dimension was ([Q12 + Q13 + Q14 + Q15 + Q16 + Q17] / 24) × 100, whereas the social support dimension was ([Q24 + Q25 + Q26 + Q27] / 16) × 100. Outcome variables were the scores on the domains of control and powerlessness and social support . Predictor variable was the method of diagnosis of endometriosis. Confounders include age, years since diagnosis, country, and education. These were controlled for as covariates in the analysis. To address the risk of recall bias due to the retrospective nature of these data, the EHP‐30 employs a 4‐week recall period; a shorter recall period may reduce the risk of recall bias. Data were analyzed using SAS version 9.4. Continuous data were summarized by mean ± standard deviation (SD) for normally distributed data, median and interquartile range for non‐normal data and minimum to maximum (min to max). Categorical variables are summarized by counts and proportions are expressed as a percentage. Diagnosis method by country was analyzed by chi‐squared test. EHP‐30 dimension scores were analyzed using analysis of covariance with diagnosis method as the variable of interest, and age, years since diagnosis, country, and education as covariates. For comparison a simple t test comparison of the difference in mean score, by diagnosis method, was also reported. All tests were two‐sided and performed using a 5% significance level. To increase power for analysis where there were 10 respondents or fewer from a particular country they were included in the “other” category for country (Appendix  S1 ). This survey was approved by the Western Sydney University Human Research Ethics Committee, approval number H13823 on May 12, 2020.

Appendix S1. Click here for additional data file.