A systematic review to determine use of the Endometriosis Health Profiles to measure quality of life outcomes in women with endometriosis.
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SUBMITTER: Jones GL
PROVIDER: S-EPMC10905511 | biostudies-literature | 2024 Mar
REPOSITORIES: biostudies-literature
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A systematic review to determine use of the Endometriosis Health Profiles to measure quality of life outcomes in women with endometriosis.
Jones Georgina L GL Budds Kirsty K Taylor Francesca F Musson Danielle D Raymer Justin J Churchman David D Kennedy Stephen H SH Jenkinson Crispin C
Human reproduction update 20240301 2
<h4>Background</h4>The Endometriosis Health Profiles (EHPs), the EHP-30 and EHP-5, are patient-reported outcome measures that were developed to measure the health-related quality of life (HRQoL) of women living with endometriosis. Prior to their development, a systematic review was undertaken which identified that the HRQoL of women living with endometriosis was poorly understood, with only three medical and one surgical study identified.<h4>Objective and rationale</h4>The 20-year anniversary of ...[more]
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Project description:Endometriosis has critical implications for women's quality of life. However, an overview of the current knowledge of this issue is limited. The objective of this systematic review was to determine the extent of endometriosis and its treatment upon women's health-related quality of life (HRQoL). PubMed, Embase, PsycoINFO, CINAHL and the Cochrane Clinical Trials were searched up to May 2012, and only studies using standardized instruments to evaluate HRQoL in women with endometriosis were selected. Our electronic searches identified 591 citations, of which 39 studies satisfied the inclusion criteria including nine qualitative studies and 30 treatment-related studies. Findings showed that endometriosis impaired women's HRQoL. Pain was strongly related to a poor HRQoL, and medical or surgical treatment could partially restore this impairment. No conclusive evidence was available on whether endometriosis imposed an additional impairment in HRQoL per se, apart from the decrease caused by chronic pelvic pain, or on the superiority of various hormonal suppression agents. The impacts of disease extent, duration and fertility status upon HRQoL were inconsistent. In summary, HRQoL was impaired in women with endometriosis, and medical or surgical treatment to alleviate pain could partially restore this impairment.
| S-EPMC3507705 | biostudies-literature
Project description:INTRODUCTION:Deep dyspareunia occurs in half of women with endometriosis, a condition present in 10% of reproductive-age women and associated with negative effects on sexual quality of life (SQoL). However, women with endometriosis can have other clinical factors (eg, superficial dyspareunia, other pelvic pains, and psychological or pain conditions) possibly affecting SQoL. AIMS:To determine whether deep dyspareunia is associated with SQoL in women with endometriosis, independent of potential confounders. METHODS:This study involved a prospective patient registry of women at a tertiary-level referral center for endometriosis and pelvic pain. Inclusion criteria were (i) referrals to the center recruited into the registry from January 2014 through December 2016 and (ii) subsequent surgery at the center with histologic confirmation of endometriosis. Exclusion criteria included menopausal status, age at least 50 years, never sexually active, or did not answer dyspareunia or SQoL questions. Bi-variable tests and multiple linear regression analysis were performed. MAIN OUTCOME MEASURES:SQoL measured by the 5-item sexual intercourse subscale of the Endometriosis Health Profile-30 (EHP-30) modular questionnaire (0-100%, with higher scores indicating worse SQoL). RESULTS:Consent rate for the prospective registry was 87%; 277 women met the study criteria (mean age = 34.2 ± 7.1 years). Most women had stage I to II endometriosis at time of surgery (64%), with the remaining having stage III to IV endometriosis. Through regression analysis, worse SQoL (higher EHP-30 sexual intercourse subscale score) was independently associated with: more severe deep dyspareunia (P < .0001), more severe superficial dyspareunia (P < .0001), increased depression (P < .001), higher pain catastrophizing (P = .04), bladder pain syndrome (P = .02), heterosexual orientation (P < .001), and new referral status (P = .02). CONCLUSION:In women with endometriosis at a tertiary referral center, more severe deep dyspareunia was associated with worse SQoL, independent of superficial dyspareunia, psychological comorbidities, and other potential confounders. Shum LK, Bedaiwy MA, Allaire C, et al. Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis. Sex Med 2018;6:224-233.
| S-EPMC6085224 | biostudies-literature
Project description:ObjectivesEndometriosis and quality of life has been the subject of much research, however, there is little consensus on how best to evaluate quality of life in endometriosis, resulting in many and diverse scales being used. In our study, we aim to identify quality of life scales used in endometriosis, to review their strengths and weaknesses and to establish what would define an ideal scale in the evaluation of endometriosis-related quality of life.Materials and methodsA search of the MEDLINE and EMBASE databases was carried out for publications in English and French for the period from 1980 to February 2017, using the words 'endometriosis' and 'quality of life'. Publications were selected if they reported on quality of life in patients with endometriosis and specified use of a quality of life scale. A quantitative and a qualitative analysis of each scale was performed in order to establish the strengths and weaknesses for each scale (systematic registration number: PROSPERO 2014: CRD42014014210).ResultsA total of 1538 articles publications were initially identified. After exclusion of duplicates and application of inclusion criteria, 201 studies were selected for analysis. The SF-36, a generic HRQoL measure, was found to be the most frequently used scale, followed by the EHP-30, a measure specific to endometriosis. Both perform well, when compared with other scales, with scale weaknesses offset by strengths. EHP-5 and EQ-5D also showed to be of good quality. All four were the only scales to report on MCID studied in endometriosis patients.ConclusionFor clinical practice, routine evaluation of HRQOL in women with endometriosis is essential both for health-care providers and patients. Both SF-36 and EHP-30 perform better overall with regard to their strengths and weaknesses when compared to other scales.
| S-EPMC6328109 | biostudies-literature
Project description:IntroductionEndometriosis is a benign gynecological disease with a high disease burden and significant, multifaceted impact on health-related quality of life (HRQoL) and sexual quality of life (SQoL).AimTo explore which patient- and disease-specific characteristics were independently associated with SQoL.MethodsA literature search was carried out to identify characteristics with an evidence-based or hypothesized effect on SQoL. Subsequently, data on HRQoL in women with endometriosis (n = 224), collected between 2013 and 2018 in a prospective longitudinal Dutch cohort study performed in 7 referral centers, were used to perform a cross-sectional cohort study. Data were collected using an online self-administered survey including the validated Endometriosis Health Profile-30. Inclusion criteria were recently diagnosed endometriosis patients or newly referred patients with a clinical diagnosis of endometriosis. Patients were excluded in case of incomplete answers on the SQoL questions. Univariate analyses and multiple linear regression analyses were performed.OutcomesSQoL, measured by the 5-item "sexual intercourse" dimension score of the modular Endometriosis Health Profile-30 questionnaire, was the primary outcome with scores ranging from 0 to 100 (0 indicating the best and 100 indicating the worst health status).ResultsBased on a literature search, 29 characteristics potentially associated with SQoL were selected from the survey and included in the analyses. In total, 192 women (mean age 36 years) met the inclusion criteria. The majority of women (86.5%) had had intercourse in the period before completing the survey and the study population showed a mean SQoL score of 47.5 ± 29.6, indicating moderate SQoL. Worse SQoL was independently associated with dyspareunia (P < .001), worse HRQoL (P = .001), severity of dysmenorrhea (P = .017), and unemployed work status (P = .022).ConclusionIn a cohort of women with endometriosis, worse SQoL was significantly and independently associated with the presence of dyspareunia, more severe dysmenorrhea, worse HRQoL, and unemployed work status. van Poll M, van Barneveld E, Aerts L, et al. Endometriosis and Sexual Quality of Life. Sex Med 2020;8:532-544.
| S-EPMC7471125 | biostudies-literature
Project description:The quality of life (QoL) of women who have been surgically treated for endometriosis may be severely impaired. Therefore, QoL can be a determining factor in the recovery of these patients. The aims of this study were to evaluate if the QoL of women surgically treated for deep endometriosis differs from a healthy age-matched population from Catalonia (Spain) and to analyze the QoL of these women considering concomitant events. This is an observational cross-sectional study, where 112 women (between 18 and 48 years old), with endometriosis treated by surgery at Hospital Universitario La Paz (Madrid, Spain), were enrolled to assess the QoL using the second version of the 12-item short form (SF-12) questionnaire. The QoL in these women were tested against a reference population of healthy women using a standardized one-sample comparison method. In addition, the QoL was compared according to the pathophysiology and type of surgery. In women with endometriosis, the physical health component, but not mental health component, was positively correlated with age (r = 0.19; p-Value = 0.048). In addition, physical (20.3 ± 29.2) and social functions (29.7 ± 38.3) and the overall physical health component (37.8 ± 19.4) were significantly lower than the reference population. On the contrary, the body pain (64.1 ± 41.2), emotional role (62.5 ± 42.2), mental health (54.4 ± 26.0), vitality (59.3 ± 31.2), and the overall mental health component (59.4 ± 26.6) had significantly higher scores than the reference. The anatomical compartment of endometriosis, reintervention, bowel nodule resection, and fertility preservation did not show statistical differences in QoL. Women with deep endometriosis had worse physical and social functions, and the overall physical health, compared to the norm in Spanish women. Bodily pain, emotional role, vitality, and the overall mental health improved. These areas could be considered protective factors in this disease. Considering the importance of QoL in adjustments in mental and physical health, it would be necessary to improve these areas of QoL in women surgically treated for deep endometriosis.
| S-EPMC9605478 | biostudies-literature
Project description:To explore endometriosis-related fatigue (ERF), health-related fitness, sleep quality, and health-related quality of life (HRQoL) in women with endometriosis in comparison with matched controls. Twenty-five affected women and twenty-five age and height-matched women without endometriosis were included. ERF was assessed through the Piper Fatigue Scale; health-related fitness was assessed through the Schöber, flamingo, and 6-min walking tests and dynamometry; and body composition was assessed through impedanciometry. Self-perceived physical fitness, sleep quality, and HRQoL were assessed through the International Fitness Scale, the Pittsburgh Sleep Quality Index, and the 12-item Short Form Health Survey, respectively. Affected women exhibited higher levels of ERF than controls, increased fat mass, and physical deconditioning (reduced back strength, lumbar flexibility, body balance, and functional capacity, p-values < 0.050). Moreover, cases also had poorer perceived physical fitness, sleep quality, and HRQoL (p-value < 0.050). Finally, we observed deteriorated health-related fitness, sleep quality, and HRQoL in those women with endometriosis with higher levels of ERF. This study constitutes the first evidence that women with endometriosis describe a generalized physical deconditioning, even more pronounced in affected women with higher levels of ERF. Further studies assessing the efficacy of rehabilitation interventions to face these physical impairments in women with endometriosis are warranted.
| S-EPMC7277433 | biostudies-literature
Project description:Study questionWhich of the competing models of the Endometriosis Health Profile 30 Questionnaire (EHP-30) factor structure is best supported by confirmatory factor analysis (CFA)?Summary answerFindings support a five-factor first-order model of the EHP-30, thereby lending support to the model originally suggested by the questionnaire developers.What is known alreadyEndometriosis has a negative impact on quality of life, and measures specifically developed to address this impact, such as the EHP-30, are vital in research and disease management. Previous studies have found different models of the EHP-30 factor structure, and generated uncertainty regarding how to use the questionnaire. CFA can be applied to compare competing factor models and determine the underlying structure of a questionnaire.Study design size durationThis cross-sectional multicenter study included 304 women with endometriosis recruited from three different public health service endometriosis clinics (referral centers for treatment of severe endometriosis) and the Danish Endometriosis Patients Association from 2014 to 2015.Participants/materials setting methodsDiagnosis of endometriosis was confirmed in medical records for 84.2% and by histology for 66.8% of participants. Questionnaires (the licensed Danish version of the EHP-30) were sent by post two times with a 6- to 12-week interval. CFA was used to examine construct validity and Bland-Altman plots to examine test-retest reliability and the convergent validity with the Short Form 36 version 2.Main results and the role of chanceResponse rate was high (87.6%). CFA supported the original first-order five-factor structure of the EHP-30, and thereby, the use of five separate scale-scores in clinical and research practice. Visual inspection of Bland-Altman plots suggested excellent test-retest reliability of the EHP-30 and supported the use of a disease specific quality of life instrument for women with endometriosis.Limitations reasons for cautionDiagnosis could not be confirmed through histology data in 33.2% of participants. However, subgroup analyses based on women with confirmed histology only, yielded similar results. Data related to menstrual cycle stage and the use of hormonal and pain medication during questionnaire completion were not collected. A larger study, including data from different countries on different continents, would be better designed to exclude potential population bias.Wider implications of the findingsEHP-30, with its original five-factor structure, appears to be a valid, stable, and specific quality of life measure for women with endometriosis. It seems easy to understand, quick to administer, and importantly, scoring might be unaffected by cyclical/menstrual pain symptoms related to endometriosis. The finding of a five-factor model from different studies across several countries supports the crosscultural validity of the EHP-30.Study funding/competing interestsThis work was supported by the Danish Endometriosis Association, which is a nongovernmental organization run by women with endometriosis and by a scholarship from the Health Research Fund of Central Denmark Region. The authors have no conflicts of interest.Trial registration numberThe Danish Data Protection Agency (J.nr: 2013-41-2264).
| S-EPMC8725642 | biostudies-literature
Project description:Endometriosis, a pathological condition in which the endometrium grows outside the uterus, is one of the most common causes of female infertility; it is diagnosed in 25-40% of infertile women. The mechanism by which endometriosis affects the fertility of females remains largely unknown. We examined the ultrastructure of oocytes from patients with minimal or mild endometriosis and control females undergoing in vitro fertilization (IVF) treatment by transmission electron microscopy (TEM) to investigate the physiological significance of oocyte quality for patients with minimal or mild endometriosis. The TEM results revealed that the oocytes from women with minimal or mild endometriosis exhibited abnormal mitochondrial structure and decreased mitochondria mass. Quantitative real time PCR analysis revealed that the mitochondrial DNA copy number was significantly reduced in the oocytes from women with minimal or mild endometriosis compared with those of the control subjects. Our results suggest that decreased oocyte quality because of impaired mitochondrial structure and functions probably an important factor affecting the fertility of endometriosis patients.
| S-EPMC4448226 | biostudies-other
Project description:Study questionWhat is the association between endometriosis and adverse pregnancy outcomes with ART use and non-use?Summary answerEndometriosis and ART use are both associated with increased risk of preterm birth, antepartum haemorrhage, placenta praevia and planned birth (caesarean delivery or induction of labour).What is known alreadyThere are contradictory findings on the association between endometriosis and adverse pregnancy outcomes, and many large studies have not considered the effect of ART use.Study design, size, durationPopulation-based cohort study of 578 221 eligible pregnancies during 2006-2015, comparing pregnancy outcomes across four groups (No endo/no ART, No endo/ART, Endo/no ART and Endo/ART).Participants/materials, setting, methodsAll female residents of New South Wales, Australia aged 15-45 years and their index singleton pregnancy of at least 20 weeks gestation or 400 g birthweight. Linked hospital, pregnancy/birth and mortality data were used. Modified Poisson regression with robust error variances was used to estimate adjusted risk ratios (aRRs) and 99% CIs, adjusting for sociodemographic and pregnancy factors.Main results and the role of chanceCompared to women without endometriosis who had pregnancies without ART use, there was increased risk of preterm birth (<37 weeks) in all groups [No endo/ART (aRR 1.85, 99% CI 1.46-2.34), Endo/no ART (aRR 1.24, 99% CI 1.06-1.44), Endo/ART (aRR 1.93, 99% CI 1.11-3.35)] and antepartum haemorrhage [No endo/ART (aRR 1.99, 99% CI 1.39-2.85), Endo/no ART (aRR 1.31, 99% CI 1.03-1.67), Endo/ART (aRR 2.69, 99% CI 1.30-5.56)] among pregnancies affected by endometriosis or ART use, separately and together. There was increased risk of placenta praevia [No endo/ART (aRR 2.26, 99% CI 1.42-3.60), Endo/no ART (aRR 1.66, 99% CI 1.18-2.33)] and planned birth [No endo/ART (aRR 1.08, 99% CI 1.03-1.14), Endo/no ART (aRR 1.11, 99% CI 1.07-1.14)] among pregnancies with endometriosis or ART use, separately. There was increased risk of placental abruption [No endo/ART (aRR 2.36, 99% CI 1.12-4.98)], maternal morbidity [No endo/ART (aRR 1.67, 99% CI 1.07-2.62)] and low birthweight (<2500 g) [No endo/ART (aRR 1.45, 99% CI 1.09-1.93)] among pregnancies with ART use without endometriosis. There was decreased risk of having a large-for-gestational age infant [Endo/no ART (aRR 0.83, 99% CI 0.73-0.94)] among pregnancies with endometriosis without ART use.Limitations, reasons for cautionEndometriosis is often under-diagnosed and women with a history of hospital diagnosis of endometriosis may represent those with more symptomatic or severe disease. If the effects of endometriosis on pregnancy are greater for those with more severe disease, our results may over-estimate the effect of endometriosis on adverse pregnancy outcomes at a population level. We were unable to assess the effect of endometriosis stage or typology on the study outcomes.Wider implications of the findingsThese results suggest that women with endometriosis including those who used ART to achieve pregnancy are a higher-risk obstetric group requiring appropriate surveillance and management during their pregnancy.Study funding/competing interest(s)This study was supported by the Prevention Research Support Program, funded by the New South Wales Ministry of Health. The funder had no role in the design, data collection and analysis, interpretation of results, manuscript preparation or the decision to submit the manuscript for publication. The authors have no conflicts of interest.Trial registration numberN/A.
| S-EPMC9527458 | biostudies-literature
Project description:To analyze the levels of chronic fatigue in Spanish women with endometriosis and its relationship with their psychosocial status and quality of life (QoL). A total of 230 Spanish women with a clinical diagnosis of endometriosis were recruited. Chronic fatigue (Piper Fatigue Scale) and pelvic pain (Numeric Rating Scale) were evaluated. An on-line battery of validated scales was used to assess psychosocial status [Hospital Anxiety and Depression Scale, Scale for Mood Assessment, Pain Catastrophizing Scale, Pittsburgh Sleep Quality Index, Gastrointestinal Quality of Life Index, Female Sexual Function Index and Medical Outcomes Study-Social Support Survey] and QoL [Endometriosis-Health Profile questionnaire-30]. Associations between fatigue and both psychosocial and QoL outcomes were explored through multivariate regression models. One-third and one-half of women showed moderate and severe fatigue, respectively. Fatigue was associated with higher anxiety and depression, poorer sleep quality, poorer sexual functioning, worse gastrointestinal health, higher catastrophizing thoughts, higher anger/hostility scores and lower QoL (p-values < 0.050). Moreover, fatigue and catastrophizing thoughts showed a mediating effect on the association between pelvic pain and QoL. This work reveals the important role of fatigue in the association between pain, psychosocial status, and QoL of Spanish women with endometriosis.
| S-EPMC7312817 | biostudies-literature