Insights into the experiences of people with endometriosis during COVID-19 pandemic

The inability to easily access health services was the leading complaint.

Key Points

Importance:

• Coronavirus-related policy changes affected the life of endometriosis patients considerably, particularly concerning limited access to health services.

Highlights:

• Mindful communication of health care policies from policymakers would reduce harm to endometriosis patients` well-being.

What's done here:

• A team led by Drs. Girling and Peate from New Zealand and Australia conducted an online nonprobabilistic survey of unmet needs in endometriosis during the pandemic.
• Endometriosis patients were contacted via social media by Australian endometriosis organizations and the Royal Women's Hospital, Melbourne.
• Endometriosis diagnosis by a medical practitioner was based on self-reported data.
• "Any wants and needs relating to" care, access to care, health care professionals, daily living, employment, education, financial matters, spirituality and religion, social relationships, and information, 10 open-ended questions were asked.
• Areas of impact were organized under three domains: access to health services, daily life, and isolation.

Key Results:

• 576 women completed surveys, 238 did NOT answer the 'Covid 19 ' question, the remaining 329 surveys were analyzed.
• Reduced access to healthcare services (postponed appointments, face-to-face services, and prolonged waiting times) was the major problem of the pandemic. Allied health services such as traditional Chinese medicine, remedial massages, and physiotherapy were also disrupted.
• 52 women reported cancellation of treatment-related surgeries, while nine had postponed fertility treatments.
• Financial issues negatively affected their symptoms and exacerbated stress in 12 patients. On the contrary, 16 participants reported improvement in their symptoms due to the comfort of home during the pandemic.
• The common issue was stress during the isolation period due to work, accessing care, and managing endometriosis.

Lay Summary

During the isolation of Covid 19 pandemic period, the most critical issue was healthcare access for patients. This was worse for patients who had chronic illnesses. Endometriosis is one of these chronic illnesses that need regular care, pain relievers, and follow-up of ART cycles.

A team led by Drs. Girling and Peate from New Zealand and Australia set up a study to explore the experience of patients with endometriosis during restrictions due to Covid 19 pandemic. The survey data were collected by inviting participants from the social media of the Australian endometriosis organization and Royal Women's Hospital, Australia. Endometriosis diagnosis by a medical practitioner was based on patient self-reported data.

Ten open-ended questions were asked about their wants and need related to care during this particular period, concerning access to care, health care professionals, daily living, employment, education, financial matters, spirituality and religion, social relationships, and information. Among 576 women who filled out the survey, only 329 who replied to the 'Covid 19 ' question were analyzed. All responses were double-coded with a high-level agreement by two researchers. Analysis was made on three main categories: access to health, daily life, and isolation.

The results showed that the main complaint was poor access to health services with limited new prescriptions. Daily life was affected by financial concerns, working from home, and managing the symptoms. Isolation brought more stress to the patients, causing a trigger for exacerbations and increasing pain.

This study was recently published in the medical journal named "Women's Health Reports"

Research Source: https://pubmed.ncbi.nlm.nih.gov/36479376/