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. 2023 Jun 1:15:893-904.
doi: 10.2147/IJWH.S409733. eCollection 2023.

Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Elke Hunsche  1 , Martha Gauthier  2 , Brooke Witherspoon  2 , Viatcheslav Rakov  1 , Sanjay K Agarwal  3
Affiliations

Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Elke Hunsche et al. Int J Womens Health. .

Abstract

Objective: This interview study sought to capture patients' experiences and perceptions of endometriosis symptoms and their impacts on daily life, as described by women in their own words. Using open-ended questions and a concept-elicitation approach, this study assessed the signs and symptoms of endometriosis and their impacts on different aspects of quality of life, including daily activities, functioning, and well-being.

Materials and methods: This interview study included US women with moderate-to-severe endometriosis-associated pain who completed one of two Phase 3, randomized, double-blind, placebo-controlled trials (SPIRIT 1 or SPIRIT 2; ClinicalTrials.gov identifiers: NCT03204318, NCT03204331). Interviews were conducted via a web/Internet-based video platform or telephone by trained interviewers, using open-ended questions in a concept-elicitation approach, and probes as needed to obtain additional feedback on the burden of endometriosis. Qualitative data from the interviews were analyzed, and emerging concepts were coded by independent coders. Concept saturation was evaluated to determine if all endometriosis-related symptoms and impacts had been described by the sample of women interviewed.

Results: Forty women participated in this study. In total, 18 unique symptoms of endometriosis emerged from the interviews; pelvic pain (92.5%), dyspareunia (80.0%), and heavy bleeding (75.0%) were the most commonly reported endometriosis symptoms. A total of 33 unique impacts of endometriosis symptoms were identified across 11 concepts: physical impacts, impacts on activities of daily living, social impacts, sleep impacts, emotional impacts, appearance impacts, financial impacts, sex-related impacts, work/school-related impacts, fertility impacts, and cognitive impacts. Concept saturation was achieved for both symptoms and impacts of endometriosis.

Conclusion: This interview study provides substantive qualitative data on the burden of endometriosis, from the perspective of affected women in the US. The findings demonstrate the debilitating effect of endometriosis symptoms, which limit and adversely impact women's daily lives.

Keywords: concept-elicitation; endometriosis; gynecology; interview; pain; patient perspective.

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Conflict of interest statement

EH and VR are employed by Myovant Sciences and are shareholders of the company. MG and BW are employees of Endpoint Outcomes, a Lumanity company, which was compensated by Myovant Sciences to conduct this research. SKA has received grants from SOBI; personal fees for speaker bureau’s from AbbVie and is a consultant for Myovant. The authors report no other conflicts of interest in this work.

Figures

Figure 1
Figure 1
Saturation of spontaneously reported symptoms and impacts of endometriosis. Each cohort is represented by a colored marker: yellow represents the first 25% of patients (n=10, 25.0%), green represents the second 25% of patients (n=10, 25.0%), blue represents the third 25% of patients (n=10, 25.0%), and orange represents the last 25% of patients (n=10, 25.0%).
Figure 2
Figure 2
Symptoms of endometriosis commonly reported (≥20%) spontaneously and on probing by interviewed women. aRefers to amount or volume of bleed during menstrual cycle. bGastrointestinal distress includes the following spontaneously reported examples: vomiting, constipation, bowel issues, diarrhea, and upset stomach. cRefers to unpredictability and/or duration of menstrual cycle.
Figure 3
Figure 3
Pain concepts and their relationship to menstruation as reported by interviewed women with endometriosis (N=40).
Figure 4
Figure 4
Impacts of endometriosis symptoms commonly (≥20%) reported spontaneously and on probing by interviewed women.
See this image and copyright information in PMC

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