How does endometriosis affect the life course of the patients?

An online survey puts forth the overall impacts of endometriosis on patients’ lives

Key Points

Highlight

• Women with endometriosis carry a high burden throughout their life course which affects their daily life in many aspects.

Importance

• Understanding the overall well-being and life course impairments in women with endometriosis is important in trying to offer them better care.

What’s done here

• This is a cross-sectional, multinational survey.
• The aim is to understand the patients’ perspectives and the impacts of endometriosis on patients’ life decisions and goal achievements.
• An online survey was carried out.

Key results

• There were 743 participants.
• More than 70% were younger than 40 years.
• The stage was not known by almost half, and among those who knew, 57% had stage 4 disease.
• 74% reported a delayed diagnosis, and more than half reported daily pain.
• The severity of the pain in the last 12 months was very severe by 54%.
• Most of the women had problems in their education and work-life, with their families and relationships and social activities.
• Many reported problems related to healthcare and psychological problems related to the disease.

Strengths and Limitations

• Strengths include the use of a quantitative survey, a good sample size and sample population, targeted research questions, and the use of a social network familiar to patients.
• Limitations include possible self-selection bias due to voluntary participation in an online community and no targeted sampling, quantitative data, and self-reported patient responses.

Lay Summary

Endometriosis, as a chronic disease has impairing effects on women’s lives. Patients carry psychological, social, and work-related burdens along with debilitating physical symptoms. Studies have been performed on these issues at a particular time in patients’ lives, however, only a few of them with small sample sizes looked into the general life-course impairments of the disease.

A cross-sectional, multinational survey was carried out online with the aim of understanding how endometriosis impacts patients’ life decisions and goal achievements and their perspectives. The study was published by Missmer et al. in a recent issue of the journal named BMJ Open. After the descriptive statistics, a subanalysis was performed that limited the participants to women as 'less positive about the future' (LPAF) or had 'not reached their full potential' (NRFP) due to endometriosis.

A total of 743 women with more than 70% being younger than 40 years of age completed the survey. Almost half of the responders did not know their stage of endometriosis whereas, among the other half, 57% stated they had stage 4 endometriosis. Most (74%) reported having a delay in the diagnosis and the younger they were when the symptoms started, the longer it took to get diagnosed. The authors state that the delay in the endometriosis diagnosis is a serious problem and could be overcome using non-invasive and accurate diagnostic tools.

More than half of the participants reported having endometriosis-associated pain every day, and 54% reported the severity of the pain in the last 12 months to be a 9 or a 10 on a scale from 0 to 10. Many women said that they faced problems achieving their goals in their education or work life. They also stated they had issues with their families and relationships and had to limit their social activities and travels.

Physical well-being was affected in more than half of them as not being able to stay active or maintain a healthy diet. Overall, 80% agreed to an extent that their life course was impaired by the disease. The majority of the responders reported that they had problems related to healthcare such as having to take medication, visiting emergency rooms, having to undergo multiple surgeries, and having mental and physiological problems. Women who identified as LPAF or NRFP generally reported more negative experiences than the rest.

It was concluded that the survey results contribute in terms of understanding the overall life struggles of women with endometriosis and that most of the patients undergo a high burden related to the disease.

Research Source: https://pubmed.ncbi.nlm.nih.gov/35477879/