The most impactful endometriosis symptom: An international, cross-sectional, two-round survey study.

INTRODUCTION: There is considerable variation in the types of symptoms experienced by people living with endometriosis, and it is unclear which symptoms impact people the most. This study aimed to identify the specific symptoms that are "most impactful" to people living with the condition. MATERIAL AND METHODS: Two sequential online surveys were conducted. Women aged over 18 years with a diagnosis of endometriosis were eligible to participate. Participants first provided a free-text list of all the endometriosis symptoms they experienced (Survey 1, Australian only). Responses were condensed into a shorter list by grouping symptom types and selecting the top 20 most common and most impactful. Survey 2 (international) participants reviewed the list and selected all that they had experienced in the last 3 months, nominated one as their single "most impactful symptom", and rated its impact on one of five randomized scale types. RESULTS: Survey 1 and Survey 2 had 195 and 983 responses, respectively. The mean age of respondents was 30.8 ± 7.9 years. There were 275 separate symptom descriptions from Survey 1, which were condensed into 104 groups, of which 25 met criteria for inclusion in Survey 2. The most commonly experienced symptoms were abdominal pain (93% of respondents), bloating (92%), and fatigue (90%), and the symptoms nominated as causing the most impact were pelvic pain (20%), abdominal pain (15%), and cramps (7%). Nearly everyone (99.7%) in Survey 2 reported experiencing at least one pain symptom. The symptoms that generated the highest impact scores were infertility (99.8/100), irregular menstrual cycles (95.3/100), and constipation (92/100). The average impact score was 87.5/100. CONCLUSIONS: There was substantial variation in the symptom selected as causing the most impact, and the level of impact was high. A focus on measuring the "most impactful symptom" in future research may enable us to better capture and measure the true symptom experience.

The "most bothersome symptom" construct: A qualitative study of Australians living with endometriosis.

INTRODUCTION: "Improvement in the most bothersome symptom" was recently selected as a core outcome for endometriosis intervention trials. This study aimed to explore the applicability of the construct of "symptom bother" in representing the lived experiences of people with endometriosis. MATERIAL AND METHODS: Semi-structured interviews were conducted to understand the meaning of "symptom bother" and related constructs. Eighteen interviews were conducted: 14 among people with a surgical diagnosis of endometriosis who were recruited from the community, and four with people who were recruited from a private gynecology clinic who had either a confirmed diagnosis or a high suspicion of the disease. All interviews were audio recorded, transcribed verbatim, and analyzed thematically. RESULTS: Three primary themes were identified: (1) endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, (3) endometriosis symptoms are more than just a "bother." The concept of "bother" to describe endometriosis symptoms did not resonate with most participants. Whilst "bother" was familiar language, it did not encompass the broader implications of living with endometriosis. Participants felt "bother" implied emotional distress, lacking a full understanding of the consequences of the disease. Instead, "symptom impact" was endorsed, allowing participants to quantify and objectively assess their symptoms, free from negative connotations. CONCLUSIONS: This was the first qualitative study to explore "symptom bother" among people living with endometriosis. Instead of "bother," "impact" was widely endorsed as a suitable construct. This term more appropriately captured the broad ways in which endometriosis symptoms impair daily functioning.