Do women with endometriosis get enough medical support?

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Providing medical support to women with endometriosis is essential because the disease is associated with chronic pain, which impacts quality of life. In a new multicenter study, researchers took a fresh look at whether these patients were satisfied with the help they were getting from the health care system. The results point to a need for more information-sharing between women with endometriosis and their physicians.

Published in PLoS One, the findings reflect responses of women in Switzerland, Germany and Austria to a survey about their satisfaction with medical support provided by health care providers. The retrospective cohort comprised 498 patients who had histologically and/or surgically confirmed endometriosis. Most were recruited between 2010 and 2016 at hospitals but 65 were participants in self-help groups.

Because there are no validated tools to evaluate medical support for endometriosis, the authors created the questions used in the survey. They asked women to respond yes or no to whether they were satisfied with medical support provided by health care providers and also asked about the influence of chronic pain and infertility at the initial consultation and at a later time. Other questions were about mental health support and provision of information and education. Finally, with a free-text question, the women were able to suggest ways that support and education around endometriosis could be improved.

Overall, 54.6% of study participants were satisfied with medical support and 45.4% were not. Feeling adequately informed by the time of diagnosis (P< 0.001), taking women’s mental troubles seriously (P< 0.001) and supporting women in handling their pain (P< 0.001) were significantly associated with satisfaction. 

The authors found that adequate information was the most distinctive indicator for patient satisfaction with medical support. Further, acknowledging psychological distress and supporting women in handling their symptoms rather than alleviating them positively affect patient satisfaction. 

With one exception, more than 80% of women rated pain management, fertility, and mental health support as a necessary part of medical counseling. When each of these issues was addressed at diagnosis or later, the patients were significantly more satisfied with medical support.  However, in women in the self-help groups, mentioning these topics did not make a difference in satisfaction.

Commenting on aspects for improvement, 10.4% of the women saw a need for better education and information, including counseling about the cause of endometriosis and 8.4% wanted an individualized approach to treatment that includes alternative therapies and help with psychological issues. Seven percent of the women wanted doctors to take them and their pain seriously.

The researchers concluded that achieve satisfaction in women with endometriosis, “we have to take the time to inform and educate patients during the first consultations but also in consecutive ones.” Further, they said, “meeting patients with empathy to creat a relationship, where they feel welcome to ask questions or present their specific needs and individual expectations is mandatory.”