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

被引：1

作者：

Mitchell, Alice M. ^{[1
]}

Rajapakse, Danushi ^{[1
]}

Peate, Michelle ^{[1
]}

Chalmers, K. Jane ^{[2
]}

Kamper, Steven J. ^{[3
,4
]}

Frawley, Helena ^{[5
,6
,7
]}

Cheng, Claudia ^{[1
,6
]}

Healey, Martin ^{[1
,6
,8
]}

Lensen, Sarah ^{[1
]}

机构：

[1] Univ Melbourne, Royal Womens Hosp, Dept Obstet Gynaecol & Newborn Hlth, Melbourne, Vic, Australia

[2] Univ South Australia, IIMPACT Hlth Res, Adelaide, SA, Australia

[3] Univ Sydney, Sch Hlth Sci, Sydney, NSW, Australia

[4] Nepean Blue Mt Local Hlth Dist, Penrith, NSW, Australia

[5] Univ Melbourne, Sch Hlth Sci, Melbourne, Vic, Australia

[6] Royal Womens Hosp, Parkville, Vic, Australia

[7] Mercy Hosp Women, Heidelberg, Vic, Australia

[8] Newlife IVF, Box Hill, Vic, Australia

来源：

ACTA OBSTETRICIA ET GYNECOLOGICA SCANDINAVICA | 2024年 / 103卷 / 08期

关键词：

bother; endometriosis; impact; qualitative research; symptoms; DIAGNOSIS; DISTRESS; IMPACT; PAIN;

D O I：

10.1111/aogs.14876

中图分类号：

R71 [妇产科学];

学科分类号：

100211 ;

摘要：

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 MethodsSemi-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.ResultsThree 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.ConclusionsThis 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. For people with endometriosis, referring to symptoms as "bothersome" fails to accurately describe the serious and significant consequences of the disease. Instead, the term "impact" better quantifies the symptom experience without the negative connotations associated with "bother."image

引用

页码：1625 / 1633

页数：9

共 30 条

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