Quality of Endometriosis Healthcare: What Do Patients Feel, What Do Doctors Say?

Study is the first comparison of the perception of patients and health professionals of endometriosis in primary healthcare.

Key Points

Highlights:

• Doctors and patients agree that clinical care for women with endometriosis needs improving.

Importance:

• A better understanding of patients’ and health professionals’ perceptions of endometriosis care would help develop ways to improve the care provided to women with the disease.

What's done here:

• Researchers in Australia conducted closed moderated online discussion groups with women with endometriosis and semi-structured telephone interviews with health professionals.

Key results:

• Women with endometriosis said that healthcare providers:
  • may dismiss their symptoms, may lack essential knowledge about endometriosis or may provide inconsistent advice. 
  • they also said that treatments are usually unsuccessful or have adverse side-effects. 
• Health professionals acknowledged: 
  • the limitations in expertise in the field of endometriosis among doctors, 
  • the presence of persistent myths,  and the challenges in achieving best practice

Limitations:

• The findings of this study are based on the opinions of a small group of patients and health professionals in Australia and may not apply to all countries or patients/caregivers.  

Lay Summary

Patients and doctors seem to agree that clinical care for women with endometriosis needs improving. This is according to the results of a study published in the Journal of Psychosomatic Obstetrics & Gynecology. 

Endometriosis is a severe condition where chronic pelvic pain can be extremely debilitating. It is therefore of great importance to manage the symptoms of the disease in a successful way to allow women to participate in social and economic activities. A good understanding of patients’ and health professionals' perception of endometriosis care is paramount in identifying problems and developing opportunities for improvement. 

In the present study, which is the first of its kind, researchers in Australia aimed to compare the perceptions of patients and practitioners about endometriosis care. In order to do so, they ran closed moderated online discussion groups among women with endometriosis and conducted semi-structured telephone interviews with health professionals. They then analyzed the participants’ answers using the so-called Framework Analysis approach, which was developed to manage and analyze qualitative data in health research.

A total of 46 women with endometriosis, 12 general practitioners, and one gynecologist took part in the study.

According to the results of the analysis, women with endometriosis felt that healthcare providers often dismissed their symptoms, lacked essential knowledge about the disease, and gave inconsistent advice. They also noted that treatments that they were prescribed were rarely successful or usually had adverse side-effects. 

According to the results of the study, health professionals acknowledged the limitations in expertise about endometriosis and the presence of persistent myths about the disease. They also acknowledged the challenges in achieving best practice in treating the disease. They said that enhancing collaborations and building a pathway to multi-disciplinary care referral as well as developing individualized treatment plans for each patient may improve the satisfaction of both patients and doctors.

Based on these findings, the authors concluded that models of multi-disciplinary, collaborative care need to be developed. These, they said, need to be evaluated against consumer-informed measures of women's wellbeing, quality of life, and satisfaction with symptom management and health care. 

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/31691598