A self-administered questionnaire to measure the painful symptoms of endometriosis: Results of a modified DELPHI survey of patients and physicians

Staraci, Stéphanie; Daraı̈, Émile; Descamps, Philippe; Nisolle, Michelle; Panel, P.; Roman, Horace; Boulkedid, Rym

doi:10.1016/j.jogoh.2017.11.003

Cited by 21 publications

(23 citation statements)

References 31 publications

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“…Amongst the various questionnaires reported in the literature that investigated different aspects of endometriosis, none had secondary prevention as their primary objective [39,[46][47][48]. For instance, a questionnaire to measure painful symptoms of endometriosis in a comprehensive and multidimensional way, including the patient's perspective, has been recently reported, and it holds promises for improving the management of endometriosis [47]. Indeed, besides diagnostic purposes, measuring and monitoring the painful symptoms of endometriosis would be fundamental in providing more accurate clinical decisions, and significantly facilitate follow-up of therapy.…”

Section: Resultsmentioning

confidence: 99%

Case–control study to develop and validate a questionnaire for the secondary prevention of endometriosis

et al. 2020

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Background Endometriosis is a debilitating gynecologic disease characterized by the implantation of endometrial tissue in ectopic locations, with signs of severe and chronic inflammation. The new knowledge on endometriosis has highlighted the value of secondary prevention through the early diagnosis and treatment of lesions to reduce serious consequences, first of all, infertility and chronic pelvic pain. The purpose of this study is to assess the reliability and validity of the questionnaire, as a tool to precociously identify women with endometriosis, to prevent the progression of symptoms. Method We reviewed the literature and selected risk factors, symptoms, and phenotypic traits of the women affected by endometriosis to create the questionnaire divided into 8 modules, with 47 questions. A total of 151 women completed the questionnaires: 51 patients who have endometriosis (the cases) and 100 matched women without endometriosis (the controls). After data collection, bivariate and multivariate analyses were conducted. Results We retained four of the significant variables from a step-down logistic regression, namely chronic pelvic pain, dyspareunia with VAS�3, painful defecation, and acne, to develop a final "predictive" logistic model achieving 90.2% sensitivity and 75% specificity. Conclusion Our pilot study demonstrated that the questionnaire provides a powerful tool for the secondary prevention of endometriosis.

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Section: Resultsmentioning

confidence: 99%

Case–control study to develop and validate a questionnaire for the secondary prevention of endometriosis

et al. 2020

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“…This work constitutes the first step towards identifying potential markers for a genetic screening test for endometriosis. By combining a patient survey (Fauconnier et al 2018), a genetic screen with endometrial or serum biomarkers and an analysis of the family medical history, it may be possible to identify women with a high predisposition to endometriosis. The combination of Table legend Table I The main results of the meta-analyses to investigate an association between gene polymorphisms and endometriosis.…”

Section: Resultsmentioning

confidence: 99%

Polymorphisms and endometriosis: a systematic review and meta-analyses

Méar

Herr

Fauconnier

et al. 2019

Human Reproduction Update

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BACKGROUND Endometriosis is an estrogen-dependent gynecological disorder that affects at least 10% of women of reproductive age. It may lead to infertility and non-specific symptoms such as chronic pelvic pain. Endometriosis screening and diagnosis are difficult and time-consuming. Late diagnosis (with a delay ranging from 3.3 to 10.7 years) is a major problem and may contribute to disease progression and a worse response to treatment once initiated. Efficient screening tests might reduce this diagnostic delay. As endometriosis is presumed to be a complex disease with several genetic and non-genetic pathogenic factors, many researchers have sought to identify polymorphisms that predispose to this condition. OBJECTIVE AND RATIONALE We performed a systematic review and meta-analysis of the most regularly reported polymorphisms in order to identify those that might predispose to endometriosis and might thus be of value in screening. SEARCH METHODS The MEDLINE database was searched for English-language publications on DNA polymorphisms in endometriosis, with no date restriction. The PubTator text mining tool was used to extract gene names from the selected publications’ abstracts. We only selected polymorphisms reported by at least three studies, having applied strict inclusion and exclusion criteria to their control populations. No stratification based on ethnicity was performed. All steps were carried out according to PRISMA guidelines. OUTCOMES The initial selection of 395 publications cited 242 different genes. Sixty-two genes (corresponding to 265 different polymorphisms) were cited at least in three publications. After the application of our other selection criteria (an original case-control study of endometriosis, a reported association between endometriosis and at least one polymorphism, data on women of reproductive age and a diagnosis of endometriosis in the cases established by surgery and/or MRI and confirmed by histology), 28 polymorphisms were eligible for meta-analysis. Only five of the 28 polymorphisms were found to be significantly associated with endometriosis: interferon gamma (IFNG) (CA) repeat, glutathione S-transferase mu 1 (GSTM1) null genotype, glutathione S-transferase pi 1 (GSTP1) rs1695 and wingless-type MMTV integration site family member 4 (WNT4) rs16826658 and rs2235529. Six others showed a significant trend towards an association: progesterone receptor (PGR) PROGINS, interCellular adhesion molecule 1 (ICAM1) rs1799969, aryl-hydrocarbon receptor repressor (AHRR) rs2292596, cytochrome family 17 subfamily A polypeptide 1 (CYP17A1) rs743572, CYP2C19 rs4244285 and peroxisome proliferator-activated receptor gamma (PPARG) rs1801282), and 12 showed a significant trend towards the lack of an association: tumor necrosis factor (TNF) rs1799964, interleukin 6 (IL6) rs1800796, transforming growth factor beta 1 (TGFB1) rs1800469, estrogen receptor 1 (ESR1) rs2234693, PGR rs10895068, FSH receptor (FSHR) rs6166, ICAM1 rs5498, CYP1A1 rs4646903, CYP19A1 rs10046, tumor protein 53 (TP53) rs1042522, X-ray repair complementing defective repair in Chinese hamster cells 1 (XRCC1) rs25487 and serpin peptidase inhibitor clade E member 1 (SERPINE1) rs1799889; however, for the 18 polymorphisms identified in the latter two groups, further studies of the potential association with the endometriosis risk are needed. The remaining five of the 28 polymorphisms were not associated with endometriosis: glutathione S-transferase theta 1 (GSTT1) null genotype, vascular endothelial growth factor alpha (VEGFA) rs699947, rs833061, rs2010963 and rs3025039. WIDER IMPLICATIONS By carefully taking account of how the control populations were defined, we identified polymorphisms that might be candidates for use in endometriosis screening and polymorphisms not associated with endometriosis. This might constitute the first step towards identifying polymorphism combinations that predispose to endometriosis (IFNG (CA) repeat, GSTM1 null genotype, GSTP1 rs1695, WNT4 rs16826658 and WNT4 rs2235529) in a large cohort of patients with well-defined inclusion criteria. In turn, these results might improve the diagnosis of endometriosis in primary care. Lastly, our present findings may enable a better understanding of endometriosis and improve the management of patients with this disease.

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“…19 Other endometriosis-specific PROMs that include dyspareunia have been developed with variable patient involvement, 20e30 with a detailed qualitative description of the physical experience of sexual pain provided in 1 study originally conducted in French. 30 The findings of this study have yet to be confirmed with an English-speaking population. Thus, the aim of this study was to provide a comprehensive account of dyspareunia in the everyday terms that people with endometriosis use to describe their pain.…”

Section: Introductionmentioning

confidence: 65%

Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain

Wahl

Lisonek

et al. 2020

Sexual Medicine

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Introduction Dyspareunia has been called the neglected symptom of endometriosis and is underexplored in clinical and research contexts. Understanding the physical experience and patient-important aspects of endometriosis-associated sexual pain can help advance valid measurement of this symptom. Aims The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition. Methods This was a qualitative descriptive study that included participants with current or previous endometriosis-associated dyspareunia recruited from a data registry. Data collection involved semistructured interviews that began with an open-ended question about dyspareunia followed by prompts related to the nature of sexual pain. Main Outcome Measures Interviews transcripts were subjected to qualitative content analysis using a priori (pain site, onset, character, radiation, associations, time course, and exacerbating/relieving factors) and emergent themes. Results A total of 17 participants completed interviews. Mean participant age was 33.3 years and most were identified as white, college-educated, heterosexual, and partnered. Location, onset, and character were important; interrelated features of endometriosis-associated dyspareunia were: (i) introital pain began with initial penetration and had pulling, burning, and stinging qualities and (ii) pelvic pain was experienced with deep penetration or in certain positions and was described as sharp, stabbing, and cramping. Dyspareunia ranged from mild to severe, had a marked psychosocial impact for some participants, and was managed using a variety of treatments and strategies. Conclusion The endometriosis-associated dyspareunia experienced by participants was heterogenous in presentation, severity, and impact. Our findings have implications for the development of valid patient-reported outcome measures of this symptom.

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A self-administered questionnaire to measure the painful symptoms of endometriosis: Results of a modified DELPHI survey of patients and physicians

Cited by 21 publications

References 31 publications

Case–control study to develop and validate a questionnaire for the secondary prevention of endometriosis

Case–control study to develop and validate a questionnaire for the secondary prevention of endometriosis

Polymorphisms and endometriosis: a systematic review and meta-analyses

Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain

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