Objective: To build consensus on most important symptoms and related consequences for use in questionnaires to characterise individuals with suspected and confirmed endometriosis in the general population.
Design: A questionnaire of 107 symptoms and related consequences of endometriosis was collaboratively developed by patients, medical doctors and researchers and further assessed in a two-round e-Delphi study. Participants assessed the relevance of the symptoms, and a priori it was decided that 70% was the threshold for inclusion of a symptom.
Study Question: How does pre-diagnosis use of hospital care differentiate between women later diagnosed with endometriosis and age-matched controls without a diagnosis?
Summary Answer: Women with hospital-diagnosed endometriosis had more frequent hospital contacts in the 10 years leading up to the diagnosis compared to women without a diagnosis of endometriosis, and the contacts were related to registered diagnoses in nearly all of the included ICD-10 chapters for the entire period.
What Is Known Already: Only a few studies have investigated the utilization of health care among women with endometriosis in the time before diagnosis, but current research shows that women with endometriosis have a higher utilization compared to women without diagnosed endometriosis. To our knowledge, no study has investigated the type of contact related to the higher utilization by using the ICD-10 diagnoses registered to the hospital contact.
Endometriosis is a complex and heterogeneous condition affecting 10% of reproductive-age women, and yet, it often goes undiagnosed for several years. Limited observed heritability (7%) of large genetic association studies may be attributable to underlying heterogeneity of disease mechanisms. Therefore, we conducted this study to investigate genetic associations across sub-phenotypes of endometriosis.
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