HealthyWomen, a not-for-profit health advocacy and information resource, is starting a survey of women and of healthcare professionals (HCP) across the U.S. to increase awareness and understanding of endometriosis as a health issue. The group’s chief executive officer spoke with Endometriosis News about the effort, and its goal and hopes.
The two surveys, which are being sponsored by AbbVie, are designed to identify knowledge gaps among these constituencies, and provide insights needed to produce data-driven information that women can use in conversations with their healthcare providers. Survey results will be posted on the HealthyWomen website when they become available.
The organization considers education critical to improving the understanding, and accurate and timely diagnosis, of endometriosis. The surveys are part of a broader awareness campaign, “Get in the Know About ME in EndoMEtriosis” (http://meinendo.com), focused on informing women about endometriosis, teaching them how to identify and address symptoms, and helping others to better understand the disorder.
“”Women with endometriosis are often undiagnosed and remain untreated,” Beth Battaglino, RN, the group’s CEO, said in a press release. “We are delighted to partner with AbbVie on these surveys to help ensure that awareness, understanding and diagnosis of endometriosis are proactive and effective.”
In her interview with Endometriosis News, Battaglino detailed HealthyWomen’s and AbbVie’s plans for the surveys.
EN: With endometriosis a relatively common disorder, why is there typically a lack of awareness and prioritization?
Battaglino: It’s true that endometriosis is a relatively common disorder — the disease affects an estimated 1 in 10 women and is one of the most common gynecologic disorders in America.
The lack of awareness and prioritization of endometriosis as an important women’s health issue can be attributed to a variety of issues. First, women with endometriosis can suffer for six to 10 years before proper diagnosis, and are often undiagnosed and untreated due to uncertainty around diagnosis protocols and treatment goals. Despite ongoing research efforts, currently there are no known biomarkers for endometriosis. Finally, many women with endometriosis are unaware they should seek medical attention for their symptoms. They are told that their heavy bleeding and pain symptoms are normal and they’re just part of being a woman, since they are often experienced during or between periods.
That’s why our surveys and the information we’ll gather from them are so important. It’s important for women to find out how to identify symptoms of endometriosis, how to address them, and how to speak about them with their healthcare professional. The surveys will produce educational content for use by women and their HCPs and can help increase awareness and understanding surrounding this disease.”
EN: What do you think will come out of initiatives like these surveys, in terms of better healthcare quality for women?
Battaglino: We hope the initiatives lead to two main outcomes. From a consumer point of view, we hope the consumer survey will help women receive better care by enabling them to identify their symptoms more easily, gain greater understanding of the disease, and empower them to engage their healthcare providers sooner.
From a HCP perspective, some aims of the HCP survey are to understand how they recognize endometriosis, how they manage a patient with endometriosis, and how they provide recommend patient support services.
All of this will help ensure that awareness, understanding and diagnosis of endometriosis are proactive and effective. Ultimately, we hope to reduce the six to 10 years women often suffer from endometriosis before obtaining a proper diagnosis and start improving their care sooner.
HealthyWomen cites two studies supporting these arguments: the World Endometriosis Research Foundation Global Study of Women’s Health, a multicenter study across 10 countries, finding that women often suffer symptoms for six to 10 years before receiving proper endometriosis diagnosis, and Clinical practice: Endometriosis, published in the New England Journal of Medicine.
More information on the survey, including how to participate, is available through this HealthyWomen website link.