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New Survey Finds Lack of Communication Between Women and Healthcare Providers About Symptoms of Dangerous Bleeding Disorder

American Academy of Nurse Practitioners® calls for more dialogue about von Willebrand disease, a common but often undiagnosed condition

AUSTIN, TEXAS — 07 June 2011

While millions of women are experiencing symptoms that could indicate a serious bleeding disorder, nearly half of them are not discussing those symptoms with their healthcare provider, according to new survey findings. The American Academy of Nurse Practitioners® (AANP) commissioned an online survey to gauge whether women experience, recognize and seek treatment for the five signs and symptoms of von Willebrand disease (VWD), one of the most common hereditary bleeding disorders. The survey, conducted by Harris Interactive, is part of an ongoing VWD awareness campaign by the AANP to help educate women experiencing the five signs and symptoms, and their healthcare providers, about this potentially life-threatening and underdiagnosed condition.

VWD is caused when von Willebrand factor, a protein in the blood that is necessary for clotting, is either missing or not working properly. The five signs and symptoms of VWD are: Easy bruising; frequent or prolonged nosebleeds; heavy, prolonged menstruation; prolonged bleeding following injury, childbirth or surgery; and prolonged bleeding during dental procedures.

Results from the survey of more than 1,000 adult women found that:

  • Close to 40 percent of women have experienced one or more of these potential symptoms but nearly half have not discussed the symptom with their healthcare provider.
  • Although the vast majority of women reported being at least comfortable discussing symptoms with their healthcare provider, they are significantly less comfortable discussing heavy and/or prolonged menstrual periods.
  • The majority of women who reported having one or more of the five signs and symptoms of VWD do not recall their healthcare provider mentioning that the symptom(s) could be a sign of a bleeding disorder.
  • Approximately three out of four women surveyed said they did not recall their healthcare provider asking questions about the severity or duration of menstruation, key questions in screening for VWD.

The Centers for Disease Control and Prevention (CDC) estimates that more than one percent of the U.S. population - three million people - has VWD. While the disorder affects men and women equally, according to the CDC, it takes a woman an average of 16 years to receive a diagnosis. Women who are undiagnosed are at a greater risk for serious complications such as miscarriage, life-threatening bleeding following childbirth and undergoing unnecessary hysterectomies.

"VWD symptoms may be something that many women dismiss as normal or do not feel comfortable discussing, but the survey showed that healthcare providers may not be broaching the subject, either," said, Josie Weiss, PhD, FNP-BC, Associate Professor, Christine E. Lynn College of Nursing at Florida Atlantic University and Fellow of the American Academy of Nurse Practitioners. "Our findings are a wake-up call, underscoring the importance of more meaningful discussions about VWD between healthcare providers and patients."

As a part of its initiative to encourage communication about bleeding disorders, the AANP urges women to speak with their healthcare provider if they are experiencing any of the five signs and symptoms of VWD.

"My first bleeding experience happened in the third grade when I lost a tooth and couldn’t stop the bleeding. Several members of my family had similar experiences so we just assumed it was normal and there was nothing we could do," said Roberta Smith, a VWD patient who went undiagnosed for years before discussing her symptoms with a healthcare provider. "Since my diagnosis, I have participated in studies to learn more about VWD. Education and communication with your healthcare provider truly are the keys to making sure you are diagnosed and receive proper treatment."

The AANP’s VWD Young Women’s Education Campaign includes educational materials developed for both healthcare professionals and patients. These materials include VWD fact sheets, a screening questionnaire and links to hemophilia treatment centers (HTCs) that specialize in treating bleeding disorders. The virtual toolkit can be found in the AANP Toolkits section of the organization’s website.

The survey and the virtual toolkit are supported through an educational grant from CSL Behring, manufacturer of the most prescribed von Willebrand factor/factor VIII replacement therapy proven to treat all types of VWD. CSL Behring is committed to the bleeding disorders community through outreach, education, research and support of a wide variety of activities and programs including specific programs for the VWD community.

More information about VWD and links to HTCs can be found at www.allaboutbleeding-US.com or www.AANP.org. To locate a nurse practitioner in your area, visit www.npfinder.com.

Methodology
This survey was conducted online within the United States between October 14-18, 2010, among 1,289 women (aged 18 and over). Figures for age, sex, race/ethnicity, education, region and household income were weighted where necessary to align them with their actual proportions in the population. Propensity score weighting was also used to adjust for respondents’ propensity to be online.

About von Willebrand Disease (VWD)
Von Willebrand disease (VWD) is caused by a deficiency or abnormality of von Willebrand factor (VWF), a protein in the blood that is necessary for normal blood clotting. Men and women are equally likely to be affected by VWD. VWD is classified by types, ranging from Type 1 (the most common and mild) to Type 3 (the most severe).

Women with VWD are more likely to experience heavy, prolonged menstruation. Other common symptoms of VWD include frequent nosebleeds and easy bruising. Bleeding can be mild or serious and can occur as a result of injury or without any obvious cause. More serious symptoms include bleeding into joints and internal organs. The VWD patient may require special care during dental procedures, surgery and childbirth.

About the American Academy of Nurse Practitioners
Created in 1985 to provide nurse practitioners with a unified way to network and to advocate for nurse practitioner issues across all specialties at the local, state, and national levels, the American Academy of Nurse Practitioners (AANP) has continually served as a major resource for NPs, their patients and other healthcare consumers, to promote excellence in practice, education and research; to provide legislative leadership to advance health policy; to establish healthcare standards and to advocate for access to high-quality healthcare. AANP is the oldest, largest and only full-service national professional membership organization for NPs of all specialties, representing the interests of the 140,000 NPs practicing in the United States today. For more information about AANP, visit www.aanp.org.

About Harris Interactive
Harris Interactive is one of the world’s leading custom market research firms, leveraging research, technology, and business acumen to transform relevant insight into actionable foresight. Known widely for the Harris Poll and for pioneering innovative research methodologies, Harris offers expertise in a wide range of industries including healthcare, technology, public affairs, energy, telecommunications, financial services, insurance, media, retail, restaurant, and consumer package goods. Serving clients in over 215 countries and territories through our North American, European, and Asian offices and a network of independent market research firms, Harris specializes in delivering research solutions that help us – and our clients – stay ahead of what’s next. For more information, please visit www.harrisinteractive.com.

About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide. CSL Behring therapies are indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in newborns. CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited (ASX:CSL), a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit www.cslbehring.com.

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Contacts:
Lauren Abel
1-800-477-9626
MCS Public Relations on behalf of AANP and CSL Behring

Greg Healy
Senior Manager, Public Relations and Communications
U.S. Commercial Operations
CSL Behring
610-878-4841
greg.healy@cslbehring.com

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