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.
This study aimed to explore the applicability of the construct of “symptom bother” in representing the lived experiences of people with endometriosis.
Alice M. Mitchell, Danushi Rajapakse, Michelle Peate, K. Jane Chalmers, Steven J. Kamper, Helena Frawley, Claudia Cheng, Martin Healey, Sarah Lensen
Disease Category: Gynaecology
Disease Name: Endometriosis
Age Range: 13 - 51
Sex: Female
Nature of Intervention: Any
- Consumers (patients)
- Patient perspectives
- Interview
Semi-structured interviews were conducted to understand the meaning of “symptom bother” and related constructs. Eighteen interviews were con-ducted: 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