Real-time Symptom Assessment in Patients With Endometriosis: Psychometric Evaluation of an Electronic Patient-Reported Outcome Measure, Based on the Experience Sampling Method

Abstract

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.

The effect of dietary interventions on pain and quality of life in women diagnosed with endometriosis: a prospective study with control group

“…However, their pain occurred much less frequently, possibly making the quantification of pain using recalled VAS-scores difficult. Van Barneveld et al (2023) have recently developed an electronic instrument to objectify symptoms in women with endometriosis. In their study, women were asked to register their pain scores at random moments over a period of 1 week, 10 times a day.…”

“…They found that these random pain scores were significantly lower compared to the reported ‘recalled’ pain scores requested at the end of the week. Perhaps this pain tool would have been more effective in objectifying the pain scores of our participants ( van Barneveld et al , 2023 ). Despite these limitations, our study paints a promising picture of the effect of the Low FODMAP diet and endometriosis diet on endometriosis-related symptoms and QoL.…”