Systematic review of quality of life measures in patients with endometriosis

Bourdel, Nicolas; Chauvet, Pauline; Billone, Valentina; Douridas, Giannis; Fauconnier, Arnaud; Gerbaud, Laurent; Canis, M

doi:10.1371/journal.pone.0208464

Cited by 103 publications

(94 citation statements)

References 208 publications

(167 reference statements)

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“…If HCPs take the patient’s pain seriously, the pain becomes legitimate and it is easier for the patient to understand and manage. A review highlighted that it is essential for HCPs to evaluate HRQoL in persons with endometriosis 53. Listening to the patient enables the development of a partnership which helps them to manage and regain control over pain, and is crucial in empowering them to take an active part in decisions about their own care planning 54.…”

Section: Discussionmentioning

confidence: 99%

Experiences of health after dietary changes in endometriosis: a qualitative interview study

2020

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ObjectivesEndometriosis is a chronic disease with no known cure. Persons affected by this disease often use complementary therapies such as dietary changes to reduce their symptoms, and so it is important to investigate whether and how these therapies affect endometriosis symptoms. The aim of this study was to explore how persons with endometriosis experienced their health after dietary changes.DesignSemi-structured qualitative interviews were conducted with 12 persons with endometriosis who had made individual dietary changes aimed at decreasing their endometriosis symptoms. The interviews were recorded and transcribed verbatim, and analysed using thematic analysis.SettingRegion Västra Götaland and the estern part of Central Sweden, Sweden.ParticipantsTwelve persons with endometriosis aged 28 to 44 were recruited from two Swedish endometriosis support forums on the Internet.ResultsParticipants experienced an increase in well-being and a decrease in symptoms following their dietary and lifestyle changes. They also felt that the dietary changes led to increased energy levels and a deeper understanding of how they could affect their health by listening to their body’s reactions. The participants understood that they could influence their symptoms through lifestyle changes. Support from family and friends was important in implementing and sustaining the dietary changes. However, the participants stressed the lack of support from healthcare professionals.ConclusionsThis study contributes to filling the knowledge gap about dietary strategies in endometriosis and lifestyle change as a method of alleviating suffering and increasing well-being. An important finding is that the participants experienced decreased symptoms and increased well-being after adopting an individually-adapted diet. Healthcare professionals should take their patients’ knowledge and experience into consideration, and allow patients to participate in their own care. Further research is necessary to give evidenced-based dietary advices in endometriosis.

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Section: Discussionmentioning

confidence: 99%

Experiences of health after dietary changes in endometriosis: a qualitative interview study

2020

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“…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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“…We assessed pain scores in 54 women undergoing diagnostic laparoscopy for suspected endometriosis. Pelvic pain symptoms were recorded using the pain dimension of the EHP-30 questionnaire, an extensively validated endometriosis-specific health-related quality of life measurement (25,26). We found that pain scores in women with endometriosis (mean and SEM, 45.5±5.54) were comparable to previous reports using the EHP-30 questionnaire in large cohorts of women from the UK (mean pain score 43.3, n=594 women), USA (mean pain score 49.3, n=225 women) and Australia (mean pain score 40.7, n=189 women) (27)(28)(29).…”

Section: Discussionmentioning

confidence: 99%

Peritoneal macrophage phenotype correlates with pain scores in women with suspected endometriosis

Gibson

Collins

Leo

et al. 2020

Preprint

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Objective: To characterise peritoneal macrophage populations in women with suspected endometriosis and assess if they are correlated with severity of pelvic pain symptoms. Design: Flow cytometry analysis of peritoneal fluid samples and clinical data. Setting: University Research Institute. Patients: Clinical questionnaires, surgical data and peritoneal fluid were collected with informed consent from women undergoing diagnostic laparoscopy for suspected endometriosis (n=54). Intervention(s): None Main Outcome Measure(s): Severity of pelvic pain symptoms was assessed by the EHP-30 questionnaire. Immune cells recovered from peritoneal fluid were analysed by flow cytometry. Results: Pain scores (pain domain of EHP30) did not differ according to endometriosis diagnosis, stage of endometriosis or whether or not women were receiving hormone treatment. Analysis of immune cells in peritoneal fluid revealed two populations of peritoneal macrophages: CD14high and CD14low which were not altered by menstrual cycle phase or hormone treatment. CD14high peritoneal macrophages were increased in women with endometriosis compared to those without but were not altered by coincident reproductive health issues such as infertility or heavy menstrual bleeding. Peritoneal macrophage phenotype correlated with pelvic pain symptoms in women with suspected endometriosis. Notably, CD14high peritoneal macrophages negatively correlated with pain scores whereas CD14low peritoneal macrophages were positively correlated. This association was independent of endometriosis diagnosis. Conclusion: Peritoneal macrophage phenotypes correlate with pelvic pain symptoms in women with suspected endometriosis and are altered by presence of disease. These results provide new insight into the association between endometriosis pathophysiology and pelvic pain symptoms.

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Systematic review of quality of life measures in patients with endometriosis

Cited by 103 publications

References 208 publications

Experiences of health after dietary changes in endometriosis: a qualitative interview study

Experiences of health after dietary changes in endometriosis: a qualitative interview study

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

Peritoneal macrophage phenotype correlates with pain scores in women with suspected endometriosis

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