Validity of self-reported endometriosis and endometriosis-related questions in a Swedish female twin cohort
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This study assessed the accuracy of self-reported endometriosis diagnoses and related questions within a Swedish female twin cohort.
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Abstract
OBJECTIVE: To examine the validity of self-reported endometriosis and to improve the reliability of questionnaires by including endometriosis-related questions.
DESIGN: Analysis of survey questionnaire data.
SETTING: Cross-sectional study.
PATIENT(S): Cohort of 26, 898 female twins aged 20-60 years at interview, who participated in either of two surveys (1998-2002 or 2005-2006).
INTERVENTION(S): None.
MAIN OUTCOME MEASURE(S): Endometriosis diagnosis in the Swedish National Inpatient Registry (IPR).
RESULT(S): The self-reported endometriosis diagnoses and endometriosis-related questions from a nationwide population-based twin registry were linked with the IPR. Fairly good agreement was found between the self-reported and IPR data on endometriosis. The receiver operating characteristics (ROC) curves showed fairly good predictive ability of self-reported endometriosis to have a confirmed endometriosis diagnosis in the IPR with an area under the curve (AUC) 0.79 (95% confidence interval [CI], 0.77-0.81). Further, the predictive ability increased to AUC 0.89 (95% CI, 0.88-0.90) when there was additional information about infertility and age.
CONCLUSION(S): Our results indicate that self-reported data on endometriosis are moderately accurate and may be useful in studies when register data are not available.
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- The role of self-management in endometriosis pain: insights from a cross-sectional survey in Germany, Austria, and Switzerland 2025
- Reliability of self-reported endometriosis and adenomyosis data in online surveys: results from the ComPaRe-Endometriosis e-cohort 2025
- Genetic and Epigenetic Components in the Pathogenesis of Adenomyosis and Endometriosis in Adolescents 2025
- Non-Surgical Options for The Diagnosis of Endometriosis in Low-Resource Settings: A Comparative Study 2025
- Validation of self-reported endometriosis 2025
- Genetic and Epigenetic Components in the Pathogenesis of Adenomyosis and Endometriosis in Adolescents 2025
- Guideline No. 449: Diagnosis and Impact of Endometriosis - A Canadian Guideline 2024
- Directive clinique no 449 : Directive canadienne sur le diagnostic et les impacts de l’endométriose 2024
- Predicting disease recurrence in patients with endometriosis: an observational study 2024
- Endometriosis Symptomatology, Dyspareunia, and Sexual Distress Are Related to Avoidance of Sex and Negative Impacts on the Sex Lives of Women with Endometriosis 2023
- Association of endometriosis with genital human papillomavirus infection in US women: a national population-based study 2023
- The use of combined oral contraceptives in patients with endometriosis 2023
- Fertility Preservation in Endometriosis: Does Patient Symptomatology Affect the Extent of the Ovarian Response? 2023
- Clinical Diagnosis and Early Medical Management for Endometriosis: Consensus from Asian Expert Group 2022
- Endometriosis and its relationship with female infertility: an integrative review 2022
- Effectiveness of adoption of positive coping strategies on women's knowledge and practices related to endometriosis 2022
- Popularity of endocrine endometriosis drugs and limited alternatives in the present and foreseeable future: A survey among 1420 affected women 2021
- Treatment preferences for medication or surgery in patients with deep endometriosis and bowel involvement -- A Discrete Choice Experiment 2021
- Validity of self-reported endometriosis: a comparison across four cohorts 2021
- Comprehensive characterization of endometriosis patients and disease patterns in a large clinical cohort 2021
- Treatment preferences for medication or surgery in patients with deep endometriosis and bowel involvement - a discrete choice experiment 2021
- Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis 2020
- Patient-Physician Interactions Regarding Dyspareunia with Endometriosis: Online Survey Results 2020
- Self-management factors associated with quality of life among women with endometriosis: a cross-sectional Australian survey 2020
- Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome (CFS): Secondary Analysis of Data From a CFS Case-Control Study 2019
- Clinical diagnosis of endometriosis: a call to action 2019
- Clinical diagnosis of endometriosis: a call to action 2019
- Genome-wide association studies on endometriosis and endometriosis-related infertility 2018
- The Long-Term Footprint of Endometriosis: Population-Based Cohort Analysis Reveals Increased Pain Symptoms and Decreased Pain Tolerance at Age 46 Years 2018
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