Introduction: Endometriosis 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). Aim: To explore which patient-and disease-specific characteristics were independently associated with SQoL. Methods: A 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 ¼ 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. Outcomes: SQoL, 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). Results: Based 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 ¼ .001), severity of dysmenorrhea (P ¼ .017), and unemployed work status (P ¼ .022). Conclusion: In 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
Background Symptoms related to endometriosis have a significant impact on the quality of life, and symptoms often recur. The experience sampling method (ESM), a digital questioning method characterized by randomly repeated momentary assessments, has several advantages over traditionally used measurements, including the ability to assess the temporal relationship between variables such as physical, mental, and social factors. Objective The aim of this study is to develop an ESM tool for patients with endometriosis to accurately measure symptoms and their course over time, allowing for personalized treatment and adequate monitoring of treatment efficacy in individual patients. Methods On the basis of international guidelines, items from validated questionnaires were selected through a literature review and during focus groups and multidisciplinary expert meetings. Data analysis was conducted using ATLAS.ti (ATLAS.ti Scientific Software Development GmbH). The feasibility and usability of the newly developed momentary assessment tool were tested for 28 consecutive days in 5 patients with endometriosis-related pain symptoms. Results Momentary assessment items contained questions concerning endometriosis symptoms, general somatic symptoms, psychological symptoms, contextual information, and the use of food and medication. A morning questionnaire on sleep and sexuality was included. In a pilot study, the patients considered the tool easy to use but time consuming. The average compliance rate of momentary assessments was 37.8% (106/280), with the highest completion rate during the first week (39/70, 56%). Therefore, it is advisable to use the ESM for a maximum of 7 days. Conclusions A new digital tool for endometriosis symptom assessment was developed using the ESM, which may help overcome the limitations of current retrospective questionnaires. After validation and testing, future studies will be planned to evaluate the use of this tool in a clinical setting in order to propose a personalized treatment plan for women with endometriosis.
Background The experience sampling method (ESM) holds advantages over traditional retrospective questionnaires including a high ecological validity, no recall bias, the ability to assess fluctuation of symptoms, and the ability to analyze the temporal relationship between variables. Objective This study aimed to evaluate the psychometric properties of an endometriosis-specific ESM tool. Methods This is a short-term follow-up prospective study, including patients with premenopausal endometriosis aged ≥18 years who reported dysmenorrhea, chronic pelvic pain, or dyspareunia between December 2019 and November 2020. An ESM-based questionnaire was sent out by a smartphone application 10 times a day during 1 week on randomly chosen moments. Additionally, patients completed questionnaires concerning demographics, end-of-day pain scores, and end-of-week symptom scores. The psychometric evaluation included compliance, concurrent validity, and internal consistency. Results Twenty-eight patients with endometriosis completed the study. Compliance for answering the ESM questions was as high as 52%. End-of-week pain scores were higher than ESM mean scores and showed peak reporting. ESM scores showed strong concurrent validity when compared with symptoms scored by the Gastrointestinal Symptom Rating Scale–Irritable Bowel Syndrome, 7-item Generalized Anxiety Disorders Scale, 9-question Patient Health Questionnaire, and the majority of questions of the 30-item Endometriosis Health Profile. Cronbach α coefficients demonstrated a good internal consistency for abdominal symptoms, general somatic symptoms, and positive affect, and an excellent internal consistency for negative affect. Conclusions This study supports the validity and reliability of a newly developed electronic instrument for the measurement of symptoms in women with endometriosis, based on momentary assessments. This ESM patient-reported outcome measure has the advantage of providing a more detailed view on individual symptom patterns and offers the possibility for patients to have insight in their symptomatology, leading to more individualized treatment strategies that can improve the quality of life of women with endometriosis.
Background: The extent of endometriosis is not directly related to the degree of symptoms, and recurrence of symptoms occurs frequently. Given that, an association with psychological distress, as in depression and anxiety disorders, is suggested. Objective: To explore the strength of the associations between endometriosis and depression or anxiety and to review potential correlating factors. Search Strategy: A literature search was carried out using the electronic databases Embase, PubMed, Web-of-science and PsycINFO. Search terms related to depression, anxiety and endometriosis were combined resulting in 1,837 records. Selection criteria: Articles describing an association between endometriosis and depression or anxiety by using validated assessment tools, structured psychiatric interviews or a documented diagnosis were included. Data collection and Analysis: With 47 articles a systematic qualitative review was performed. Seventeen studies were eligible for meta-analysis. Main Results: In the meta-analysis, endometriosis patients experienced significantly more symptoms of depression (SMD of 0.71 (95%CI 0.36, 1.06) and anxiety (SMD 0.60 (95%CI 0.35, 0.84)) compared to healthy controls, but no differences were found comparing endometriosis patients with chronic pelvic pain patients without endometriosis. Besides the effect of pain, other correlating factors included age, quality of life, quality of sleep, fatigue, sexual function, gastrointestinal symptoms, comorbidity, selfesteem, emotional self-efficacy, coping style, social adjustment, pain imagery and pain sensitization. Conclusion: Endometriosis is associated with depression and anxiety. Therefore, an integrated patient-centred approach to medical, psychological and sexual issues is suggested as this may positively influence the perception of symptoms, treatment adherence, quality of life, prognosis and health care costs.
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