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OBJECTIVE To quantify the impact of endometriosis-related symptoms on physical and mental health status, health-related quality of life (HRQoL), and work-related aspects (absenteeism, presenteeism, work productivity, activity impairment). DESIGN Cross-sectional quantitative study. SETTING Academic and research institution. PATIENT(S) Women (n=193) with self-reported surgically diagnosed endometriosis from the Endometriosis Patient Registry at Ponce School of Medicine and Health Sciences (PSMHS). INTERVENTION(S) Patients completed an anonymous questionnaire divided into three sections consisting of questions from the Patient Health Survey (SF-12®), the Endometriosis Health Profile (EHP-5), and the Work Productivity and Activity Impairment Survey (WPAI). MAIN OUTCOME MEASURE(S) Impact of endometriosis symptoms on physical and mental health status, health-related quality of life (HRQoL), absenteeism, presenteeism, work productivity and activity impairment was quantified. RESULTS Patients had SF-12 scores denoting significant disability in the phyisical and mental health components. They also reported an average of 7.41 hrs (approximately one working day) of work time loss during the week the symptoms are worse. In addition, WPAI scores show high impact on work-related domains: 13% of average loss in work time (absenteeism), 65% of their work was impaired (presenteeism), 64% loss in efficiency levels (work productivity loss), and 60% of daily activities perturbed (activity impairment). CONCLUSION Endometriosis symptoms such as chronic, incapacitating pelvic pain and infertility negatively and substantially impact the physical and mental health status, HRQoL, and productivity at work of patients with endometriosis.

ObjectiveTo standardize the recording of surgical phenotypic information on endometriosis and related sample collections obtained at laparoscopy, allowing large-scale collaborative research into the condition.DesignAn international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries.SettingTwo workshops were conducted in 2013, bringing together 54 clinical, academic, and industry leaders in endometriosis research and management worldwide.Patient(s)None.Intervention(s)A postsurgical scoring sheet containing general and gynecological patient and procedural information, extent of disease, the location and type of endometriotic lesion, and any other findings was developed during several rounds of review. Comments and any systematic surgical data collection tools used in the reviewers' centers were incorporated.Main Outcome Measure(s)The development of a standard recommended (SSF) and minimum required (MSF) form to collect data on the surgical phenotype of endometriosis.Result(s)SSF and MSF include detailed descriptions of lesions, modes of procedures and sample collection, comorbidities, and potential residual disease at the end of surgery, along with previously published instruments such as the revised American Society for Reproductive Medicine and Endometriosis Fertility Index classification tools for comparison and validation.Conclusion(s)This is the first multicenter, international collaboration between academic centers and industry addressing standardization of phenotypic data collection for a specific disease. The Endometriosis Phenome and Biobanking Harmonisation Project SSF and MSF are essential tools to increase our understanding of the pathogenesis of endometriosis by allowing large-scale collaborative research into the condition.

ObjectiveTo harmonize standard operating procedures (SOPs) and standardize the recording of associated data for collection, processing, and storage of fluid biospecimens relevant to endometriosis.DesignAn international collaboration involving 34 clinical/academic centers and 3 industry collaborators from 16 countries on 5 continents.SettingIn 2013, 2 workshops were conducted, followed by global consultation, bringing together 54 leaders in endometriosis research and sample processing worldwide.Patient(s)None.Intervention(s)Consensus SOPs were based on: [1] systematic comparison of SOPs from 18 global centers collecting fluid samples from women with and without endometriosis on a medium/large scale (publication on >100 cases), [2] literature evidence where available, or consultation with laboratory experts otherwise, and [3] several global consultation rounds.Main Outcome Measure(s)Standard recommended and minimum required SOPs for biofluid collection, processing, and storage in endometriosis research.Result(s)We developed recommended standard and minimum required SOPs for the collection, processing, and storage of plasma, serum, saliva, urine, endometrial/peritoneal fluid, and menstrual effluent, and a biospecimen data-collection form necessary for interpretation of sample-derived results.Conclusion(s)The Endometriosis Phenome and Biobanking Harmonisation Project SOPs allow endometriosis research centers to decrease variability in biofluid sample results, facilitating between-center comparisons and collaborations. The procedures are also relevant to research into other female conditions involving biofluid samples subject to cyclic reproductive influences. The consensus SOPs are based on the best available evidence; areas with limited evidence are identified as requiring further pilot studies. The SOPs will be reviewed based on investigator feedback, and through systematic tri-annual follow-up. Updated versions will be made available at: endometriosisfoundation.org/ephect.

ObjectiveTo harmonize standard operating procedures (SOPs) and standardize the recording of associated data for collection, processing, and storage of human tissues relevant to endometriosis.DesignAn international collaboration involving 34 clinical/academic centers and three industry collaborators from 16 countries on five continents.SettingIn 2013, two workshops were conducted followed by global consultation, bringing together 54 leaders in endometriosis research and sample processing from around the world.Patient(s)None.Intervention(s)Consensus SOPs were based on: 1) systematic comparison of SOPs from 24 global centers collecting tissue samples from women with and without endometriosis on a medium or large scale (publication on >100 cases); 2) literature evidence where available, or consultation with laboratory experts otherwise; and 3) several global consultation rounds.Main Outcome Measure(s)Standard recommended and minimum required SOPs for tissue collection, processing, and storage in endometriosis research.Result(s)We developed “recommended standard” and “minimum required” SOPs for the collection, processing, and storage of ectopic and eutopic endometrium, peritoneum, and myometrium, and a biospecimen data collection form necessary for interpretation of sample-derived results.Conclusion(s)The EPHect SOPs allow endometriosis research centers to decrease variability in tissue-based results, facilitating between-center comparisons and collaborations. The procedures are also relevant to research into other gynecologic conditions involving endometrium, myometrium, and peritoneum. The consensus SOPs are based on the best available evidence; areas with limited evidence are identified as requiring further pilot studies. The SOPs will be reviewed based on investigator feedback and through systematic triannual follow-up. Updated versions will be made available at: http://endometriosisfoundation.org/ephect.