Endometriosis-associated symptoms have a negative impact on the quality of life in women

Endometriosis is a broad-spectrum disease that negatively affects the physical, social and psychological health of women.

Key Points

Highlights:

• The term "impact" describes the symptoms of women with endometriosis better than the term "bother".

Importance:

• Endometriosis patients should be comprehensively assessed to improve the quality of their life.

What’s done here? 

• This study was conducted through one-on-one online semi-structured interviews to evaluate the severity of symptoms in women having endometriosis.
• Women aged over 18 years, with at least one endometriosis symptom, and having a confirmed diagnosis or high suspicion of endometriosis were included in this online study.
• Women who met the eligibility criteria were called by researchers via email for an invitation to an online interview.
• Three themes were investigated mainly as follows: endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, and (3) endometriosis symptoms are more than just a “bother.” 

Key results:

• A total of 18 participants were selected as eligible participants for the research interview.
• Fatigue, mood changes, and bloating were the most frequent symptoms in this population.
• Pelvic pain, fatigue, and period pain were reported as the additional “most bothersome” symptoms.
• Endometriosis was found to hurt daily life and psychological well-being with functional and social consequences.
• Limitations in daily activities, including the ability to walk, sleep, and eat were considered as the “most bothersome” symptom.
•  “bother” is determined as an insufficient term to identify their endometriosis experiences by most women with endometriosis.
• “Impact” was considered more appropriate by endometriosis patients to describe endometriosis-associated difficulties in their lives.

Lay Summary

Women with endometriosis experience restrictions in their daily activities due to pelvic pain, resulting in abstinence from work or school and discontinuation of their social activities. Evaluation and management of endometriosis-associated symptoms is important to prevent these significant consequences. However, successful intervention may change between and within individuals depending on the individual's presentation and needs.

Mitchell et al. from Australia, published a study titled “The “most bothersome symptom” construct: A qualitative study of Australians living with endometriosis” in the journal Acta Obstetricia et Gynecologica Scandinavica.

The authors aimed to evaluate the severity of symptoms in women having endometriosis through one-on-one online semi-structured interviews. Three themes were investigated mainly as follows: endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, and (3) endometriosis symptoms are more than just a “bother.”

They found that endometriosis had a detrimental effect on daily life and psychological well-being with functional and social consequences.  Limitations in daily activities, including the ability to walk, sleep, and eat are considered the “most bothersome” symptoms. “bother” is determined as an insufficient term to identify their endometriosis experiences by most women with endometriosis. Instead, “impact” was considered more appropriate by endometriosis patients to describe endometriosis-associated difficulties in their lives.  

“Further work is needed to develop and validate an outcome measurement instrument to comprehensively assess the “most impactful symptom” in people living with endometriosis,” they added.

Research Source: https://pubmed.ncbi.nlm.nih.gov/38751074/