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

Introduction: It is recognized that for individuals living with endometriosis, receiving a diagnosis is psychosocially beneficial, but little is known about whether this is influenced by the way in which the disease is diagnosed. The primary objective of this study was to determine the impact of the diagnostic test method (clinical, diagnostic imaging, or diagnostic laparoscopy) of endometriosis on the individual's sense of control over their disease and their perceived access to social supports. 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. Material and Methods: This retrospective cohort study reports on data collected using the Endometriosis Health Profile-30 (EHP-30) section of a previously published larger survey conducted between May and July 2020. Women aged 18-55 years who had received a diagnosis of endometriosis were recruited by social media platforms. The two domains of interest on the EHP-30 were control and powerlessness and social support. Scores on these domains were analyzed with diagnosis method as the variable of interest. Results: In all, 1634 valid survey responses were received. There was a small statistically significant difference found between control and powerlessness scores for patients that received a diagnosis via imaging (ultrasound/MRI; n = 120) vs clinical diagnosis (n = 121) (p = 0.049). However, this did not reach clinical significance when covariates were controlled for (p = 0.054). No other comparisons reached statistical significance. Conclusions: The diagnostic method of endometriosis does not appear to have a clinically significant impact on an individual's sense of control over their disease nor their access to social supports. However, further research into these domains to delineate the true impact of the diagnostic method is required.