Large-Scale Survey of Women with Uterine Fibroids Reveals Significant Impact on Quality of Life
Large-Scale Survey of Women with Uterine Fibroids Reveals Significant Impact on Quality of Life and Workplace Performance and Desire for Less Invasive Treatment Options
African-American Women Disproportionately Affected by Fibroids:
More Symptoms, Longer Time to Diagnosis, and Greater Need for Information
Fibroid Relief Announces New Tool to Help Women Get Diagnosed Earlier, Facilitate Conversations with Health Care Providers and Access the Best Treatment Options
October 2013 - A recently published survey of nearly 1,000 U.S. women with uterine fibroids demonstrates that fibroids cause significant fear and morbidity, can compromise workplace performance and that women prefer treatment options that are not invasive and protect fertility. Results of this national survey, led by leading fibroid experts from the Mayo Clinic, the Cleveland Clinic, and the University of North Carolina, were published this month in the American Journal of Obstetrics and Gynecology (AJOG) and the Journal of Women’s Health (JWH). The findings shed new light on the impact, prevalence, and treatment concerns related to uterine leiomyomas (fibroids), which affect up to 80% of women by age 50. The large-scale, racially diverse survey of symptomatic U.S. women aged 29 to 59 – spanning childbearing age to menopause – is the first of its kind and has prompted patient education group Fibroid Relief to develop a new conversation starter tool for women for use in navigating treatment options with their health care providers.
“Many people are unaware that the vast majority of women will experience uterine fibroids in their lifetime. This condition can cause significant morbidity for those who are symptomatic,” said Dr. Elizabeth A. Stewart, lead author of the study and Professor of Obstetrics and Gynecology and Chair, Division of Reproductive Endocrinology, at Mayo Clinic and Mayo Medical School in Rochester, MN. “We conducted this survey to better understand the experience and needs of women with fibroids. Our study shows that women suffer too long before seeking treatment. This can narrow their range of effective options. Women are concerned about missing work and not reaching their career potential due to their symptoms, and they strongly desire noninvasive treatment options that preserve the uterus and fertility.”
The survey assessed diagnosis, information seeking behaviors, attitudes about fertility, impact on work, and treatment preferences among women living with uterine fibroids for an average of nearly nine years. Key findings of the survey include:
The mean amount of time women delayed seeking treatment was 3.6 years, with 32% of women waiting more than five years
Most reported fears associated with their fibroids, including being afraid that they will grow (79%) and that they will need a hysterectomy (55%), as well as fears regarding relationships, sexual function, body image, loss of control, and hopelessness
Two-thirds (66%) of women were concerned about missed days from work due to their symptoms, and 24% of employed respondents felt that their symptoms prevented them from reaching their career potential
The vast majority said they prefer a minimally invasive treatment option that preserves the uterus
“We were alarmed to find that this survey demonstrates a dangerous delay in diagnosis that may unnecessarily advance women’s fibroid growth and rob them of less invasive treatment choices", said Justine Atkinson, Executive Director of Fibroid Relief. “We want to empower women to get diagnosed early so that they may be less likely to require a hysterectomy and more able to make the best treatment decisions for them - based solely on their own health, lifestyle and professional needs, and family preferences.”
Uterine ﬁbroids are benign tumors in the uterus and are the leading cause of hysterectomy in the United States. Nearly half of hysterectomies are performed for uterine fibroids and abnormal bleeding. Hysterectomies involve permanent removal of the uterus which prevents fibroid recurrence but also results in loss of reproductive potential and many possible side effects including early menopause and urination and defecation disorders.
“While hysterectomy has been a common procedure to treat fibroids for decades, we were not surprised to find that uterine-sparing treatment options – or, alternatives to hysterectomy – are very important to women whether or not they are considering a pregnancy,” said Dr. Wanda Nicholson, Associate Professor of Obstetrics and Gynecology, Center for Women’s Health Research, at the University of North Carolina School of Medicine in Chapel Hill, NC. “A majority of survey respondents, 51%, told us that it is important to have a fibroid treatment option that allows a woman to keep her uterus, and 84% of those under 40 said they prefer a treatment option that does not involve invasive surgery of any kind.”
When presented with treatment descriptions, the majority of women surveyed (60%) rated focused ultrasound as their top treatment choice. Focused ultrasound treatment, which has been available to U.S. fibroid patients since 2004 and is the first noninvasive treatment option for this condition, uses high intensity sound waves to heat and destroy uterine fibroid cells while leaving surrounding tissue intact. It is an outpatient procedure that involves no incisions and enables many women to return to normal activity in one or two days.
“This survey confirms that we have a lot of work to do in terms of disseminating a patient centered approach to uterine fibroids,” added Dr. Stewart. “We need to educate women with fibroids about their treatment options, involve them in the decision-making process, and make all options available – and affordable – for all women. Only 32% of women surveyed said they expressed personal preferences to their doctor about treatment options, and just 35% said their doctor discussed all possible treatment options with them. It is clear that women’s voices need to be heard by health care providers – and third party payers who reimburse insurance companies for the costs of these procedures – when considering the various options for treatment.”
African-American Women Sub-study
A sub-study of 268 African-American women, published in the Journal of Women’s Health this month, found that they have more severe symptoms, unique concerns, and different information-seeking behavior for ﬁbroids.
“Uterine fibroids have a threefold increased relative risk and prevalence among African-American women and an earlier age of onset,” said Dr. Linda Bradley, Professor of Surgery and Vice Chairman of the Obstetrics, Gynecology and Women's Health Institute, and Director of the Center for Menstrual Disorders, Fibroids & Hysteroscopic Services at the Cleveland Clinic in Cleveland, OH. “This study has shown us that the burden of uterine ﬁbroids is even more extensive for black women compared to white women than previously reported. In addition, we were alarmed to find that African-American women, despite their far more severe symptoms, report significant delays in seeking treatment compared to white women. The real-world consequences of these findings cannot be ignored.”
Key findings of the sub-study include:
African-American women were signiﬁcantly more likely to have severe or very severe symptoms, including heavy or prolonged menses and anemia
They more often reported that ﬁbroids interfered with physical activities and relationships, and were more likely to miss days from work
One-third (32%) of black women waited more than five years before seeking treatment for their fibroids, compared to only 17% of white women; similarly, while 43% of white women say they sought treatment within one year or less, only 20% of African-American women did the same
Concerns for future fertility and pregnancy were key concerns for black women; 71% said preserving the uterus was very important or important, versus 41% of white women
“Take Five” Patient Tool
In response to these survey findings, Fibroid Relief has developed a new online “conversation starter” tool designed to help empower women to stop waiting and start taking action by talking with their physicians about their symptoms, their diagnosis, and the best treatment options for them. The “Fibroid Take Five” tool features five basic action steps, questions for women to ask themselves and their health care provider about fibroids, and links to other resources that outline treatment choices and connect women with other women who experience fibroid symptoms.
“We are pleased to be able to offer women a tool to help shorten the time they wait to seek treatment and relief for their symptoms, as well as encourage the initiation of critical information-seeking and decision-making between women and their doctors,” said Mrs. Atkinson.
The Harris Interactive survey was completed online from December 1, 2011 through January 16, 2012, and included 968 women diagnosed with symptomatic uterine fibroids who had not had a hysterectomy. Data was weighted by age, education, region and income to reflect a nationally representative sample. The survey was funded by Fibroid Relief.
Uterine fibroids are common, non-cancerous tumors of the uterine muscle (myometrium) consisting of smooth muscle cells and connective tissue. A woman may have one fibroid or groups of several fibroids, and they can range in size from less than 1 inch to more than 8 inches across. Many fibroids go undetected unless they cause symptoms.
About Treatment Options
Treatment options for fibroids include hormone therapy (least invasive), focused ultrasound, uterine fibroid embolization (UFE), myomectomy, and hysterectomy (most invasive). Hormonal therapy involves the use of birth control pills or other hormones to shrink fibroids or control fibroid related bleeding. Focused ultrasound uses waves of ultrasound energy to heat and destroy fibroid tissue. UFE involves blocking the uterine artery with small particles to decrease blood supply to the fibroid. Myomectomy surgically removes fibroids from the uterine wall, and hysterectomy involves removing the uterus entirely, eliminating any possibility of fibroid recurrence.
About Fibroid Relief
Fibroid Relief was formed in 2008 and is dedicated to supporting women suffering from uterine fibroids who seek noninvasive treatment alternatives. The program is committed to raising awareness about the benefits of focused ultrasound and works to promote patient access through educational and advocacy activities. Fibroid Relief is committed to ensuring that all patients have access to treatment and aims to contribute to an increased dialogue between patients, physicians and payers, so that patients can make the best individual treatment decisions. Fibroid Relief is a program of The Focused Ultrasound Foundation, which was established in 2006 and is the largest non-governmental source of funding for focused ultrasound research. Information about Fibroid Relief can be found at www.fibroidrelief.org.