Patient-completed or symptom-based screening tools for endometriosis: a scoping review

Surrey, Eric S.; Carter, Cathryn M.; Soliman, Ahmed M.; Khan, Shahnaz; DiBenedetti, Dana; Snabes, Michael C.

doi:10.1007/s00404-017-4406-9

Cited by 46 publications

(48 citation statements)

References 39 publications

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“…For example, many women with endometriosis experience significant delays in receiving a formal diagnosis of endometriosis (approximately 7-12 years) [57,58]. Assessment of the core symptoms of endometriosis from the patient-perspective could facilitate earlier diagnosis of endometriosis, however there are currently no validated measures routinely used by healthcare professionals for this purpose [59]. Similarly, the ESD and EIS may have use for monitoring response to treatment in clinical practice and providing additional insights into the burden of disease beyond generic HRQoL (e.g., and legacy PRO measures (e.g., EHP-30) commonly used for this purpose [60].…”

Section: Discussionmentioning

confidence: 99%

Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

Gater

Taylor

Seitz

et al. 2020

J Patient Rep Outcomes

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Background: Endometriosis is a common, chronic, impactful condition in women of reproductive age. In the absence of established sensitive and specific biomarkers, disease severity is determined by patient-reported symptoms and impacts. This article details the development of two new patient-reported outcome (PRO) measures designed to assess efficacy endpoints in clinical studies: The Endometriosis Symptom Diary (ESD) and the Endometriosis Impact Scale (EIS). Methods: The ESD and EIS were developed according to best practice and scientific standards (including the Food and Drug Administration (FDA) PRO Guidance) and with extensive input from women with surgically-confirmed endometriosis. Research included: a review of published qualitative literature; concept elicitation interviews in the US, Germany and France (n = 45) to explore the experiences of women with endometriosis and to inform ESD and EIS development; and cognitive interviews in the US and Germany (n = 31) to assess relevance and understanding of the ESD and EIS and usability of administration using an electronic handheld device. The FDA and the European Medicines Agency (EMA) as well as PRO and clinical experts were consulted throughout the process. Results: Pelvic pain was identified as the most frequent, severe and bothersome symptom for women with endometriosis. Pain was reported to be greatest during menstruation (dysmenorrhea) and during or after sexual intercourse (dyspareunia). Pain resulted in significant impairments in physical activities, work/study, social/leisure activities, household activities and sexual functioning. All women highlighted the emotional impact of endometriosis. Descriptions of pain and associated impacts were largely consistent across participants from the US and Europe, with the most notable differences being the words used to describe the location of pain (e.g., 'pelvis' vs. 'abdomen'). Testing during cognitive interviews indicated that the ESD and EIS were well understood and consistently interpreted. Furthermore, all participants found the ePRO devices easy to use and no issues regarding visual presentation, selection of responses or navigation were identified. Conclusions: Evidence from extensive qualitative research supports the content validity of the ESD and EIS as patient-reported measures of the disease-defining symptoms of endometriosis and the associated impact on women's lives. Future research will seek to establish the measurement properties of the measures.

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Section: Discussionmentioning

confidence: 99%

Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

Gater

Taylor

Seitz

et al. 2020

J Patient Rep Outcomes

View full text Add to dashboard Cite

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“…В последних исследованиях представлено несколько мер и/или инструментов для прогнозирования НГЭ, однако не создано ни одного эффективного метода, который был бы практичным в качестве инструмента скрининга в клинической практике [7].…”

Section: результаты и обсуждениеunclassified

“…Разработанные на основе симптомов инструменты для скрининга НГЭ имеют ограниченную клиническую пользу и не подходят для работы, в основном из-за сложности их оценки или неадекватной проверки [7].…”

Section: результаты и обсуждениеunclassified

Clinical and Medical-History Risk Factors and Immunological Markers for External Genital Endometriosis

Chervov¹,

Артымук²,

Danilova³

et al. 2019

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“…However, in the field of endometriosis, screening tool development has been confined to women attending secondary and tertiary gynaecological surgical units or infertility clinics 12 13. Even if successful, screening tools developed from such studies would not be applicable in primary care due to the requirement of specialised examinations, such as ultrasound, MRI or surgery 14. In the present study, we used a control group from the general population.…”

Section: Introductionmentioning

confidence: 99%

Development of a prediction model to aid primary care physicians in early identification of women at high risk of developing endometriosis: cross-sectional study

et al. 2019

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ObjectivesTo identify predictors of disease among a few factors commonly associated with endometriosis and if successful, to combine these to develop a prediction model to aid primary care physicians in early identification of women at high risk of developing endometriosis.DesignCross-sectional anonymous postal questionnaire study.SettingWomen aged 18–45 years recruited from the Norwegian Endometriosis Association and a random sample of women residing in Oslo, Norway.Participants157 women with and 156 women without endometriosis.Main outcome measuresLogistic and least absolute shrinkage and selection operator (LASSO) regression analyses were performed with endometriosis as dependent variable. Predictors were identified and combined to develop a prediction model. The predictive ability of the model was evaluated by calculating the area under the receiver operating characteristic curve (AUC) and positive predictive values (PPVs) and negative predictive values (NPVs). To take into account the likelihood of skewed representativeness of the patient sample towards high symptom burden, we considered the hypothetical prevalences of endometriosis in the general population 0.1%, 0.5%, 1% and 2%.ResultsThe predictors absenteeism from school due to dysmenorrhea and family history of endometriosis demonstrated the strongest association with disease. The model based on logistic regression (AUC 0.83) included these two predictors only, while the model based on LASSO regression (AUC 0.85) included two more: severe dysmenorrhea in adolescence and use of painkillers due to dysmenorrhea in adolescence. For the prevalences 0.1%, 0.5%, 1% and 2%, both models ascertained endometriosis with PPV equal to 2.0%, 9.4%, 17.2% and 29.6%, respectively. NPV was at least 98% for all values considered.ConclusionsExternal validation is needed before model implementation. Meanwhile, endometriosis should be considered a differential diagnosis in women with frequent absenteeism from school or work due to painful menstruations and positive family history of endometriosis.

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Patient-completed or symptom-based screening tools for endometriosis: a scoping review

Cited by 46 publications

References 39 publications

Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

Clinical and Medical-History Risk Factors and Immunological Markers for External Genital Endometriosis

Development of a prediction model to aid primary care physicians in early identification of women at high risk of developing endometriosis: cross-sectional study

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