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Study shows lack of awareness among Quebecers around Pulmonary Arterial Hypertension November is PAH Awareness Month

11.06.2008

Vancouver, BC - Pulmonary Arterial Hypertension (PAH) is a rapidly progressive, degenerative disease that will claim the lives of 40 to 55 per cent of patients within the first two years of diagnosis[1], yet according to a 2008 consumer awareness survey conducted by Ipsos Reid, 87 per cent of Quebecers are not even aware of its existence, making Quebec the province with lowest level of awareness in all of Canada.

Additionally, with 91 per cent of the Quebec population unable to explain, or explain with difficulty, the differences between pulmonary arterial hypertension and regular hypertension, this number is potentially higher.

The generality of PAH symptoms combined with the apparent lack of awareness makes the disease very difficult to diagnose, in turn, preventing individuals from having a conversation with their doctors.

“The results of the survey, while not surprising, are alarming,” says Dr. Steve Provencher, Director of the Pulmonary Hypertension Clinic at the Hôpital Laval, Quebec City. “The first step in diagnosing PAH is recognizing the symptoms, and this profound lack of awareness may cause a delay in detection. Everyday that PAH goes undiagnosed, there is an increased risk that it will have devastating affects on a patient’s health and quality of life, potentially causing death within a short period of time.”  

Despite the seriousness surrounding the impact of PAH, survey results show that only 18 per cent per cent of Quebecers were able to correctly identify dizziness as a symptom of PAH, and almost one-third of Quebec respondents correctly named fatigue as a symptom.

“November is PAH Awareness Month, which provides the perfect opportunity to grow the knowledge base among Canadians and their physicians surrounding the symptoms, scope and rapid progression of this disease,” says Darren Bell, President of the PH Association of Canada.

PAH may affect between 2,000 and 10,000 Canadians with approximately 500 new cases being diagnosed each year. PAH is characterized by the narrowing of blood vessels that carry blood from the heart to the lungs. As these arteries and vessels start to narrow, it becomes more difficult for the heart to pump blood through them, leading to progressive stress on the heart. If this narrowing of the blood vessels is left untreated the heart begins to enlarge and eventually fails.

Symptoms associated with PAH include unexplained shortness of breath, chest pain, fatigue, intolerance to exercise, dizziness, fainting and swollen feet and/or ankles. These symptoms can strike anyone at any time despite age, gender, or ethnicity.

With the ability of PAH to touch the life of any Canadian, it may be disturbing to learn that, according to Ipsos Reid, 50 per cent of the Quebec populous see PAH as a disease affecting mainly men over 45 years old, and only 11 per cent of Quebecers believe that PAH can cause fatality within a short period of time. “These are dangerous misconceptions,” says Bell, who in July, 2007 lost his son, Dylan, 12, to PAH. “If individuals don’t believe that they fit the ‘profile’ of a PAH sufferer, then they will be indifferent to the symptoms.” 

Early diagnosis and treatment are imperative in helping to stabilize the progression of PAH. There are several therapies approved for use in Canada for PAH. Finding the patients, however, is the key, according to Dr. Provencher. “Early intervention may lead to improved outcomes and better quality of life for patients with PAH. As such, Canadians, and more importantly physicians, need to arm themselves with the knowledge around PAH and if symptoms continue to elude common diagnoses, consider PAH as an option.”

About the Survey

The 2008 Pulmonary Hypertension Consumer Awareness Survey was fielded to 1,000 Canadian adults, 18 plus, using the Canadian Ipsos Reid Express Omnibus, under the auspices of the PH Association of Canada. Quebec comprised 24 per cent of all respondents with 244 participants. The results of the survey are reliable with a +3.1 per cent margin of error 19 times out of 20. The interviews were conducted between October 21 and 23, 2008.

The survey was supported by an unrestricted education grant from Actelion Pharmaceuticals Canada Inc. 

Summary of Quebec Survey Results

  • 87 per cent of respondents were unfamiliar with PAH.
  • 91 per cent of those surveyed were either unable or had difficulty explaining the difference between regular hypertension and PAH.
  • Only 11 per cent of respondents correctly identified PAH as a disease that can be fatal in a short period of time.
  • Half of the respondents believed that PAH is a disease most commonly found in men over the age of 45; only 6 per cent believe that children under the age of 18 can be affected.
  • When asked how to slow the progression of PAH, only 13 per cent of respondents correctly identified ‘taking medication,’ while almost half incorrectly cited ‘staying active’ as the key.

PH Association of Canada

The PH Association of Canada is a not-for-profit organization dedicated to raising awareness and education around the seriousness of Pulmonary Arterial Hypertension among the general public and health care professionals.  

For more information on PAH, please visit www.phacanada.ca.

***

For more information about this press release, or to arrange an interview with a physician / patient spokesperson, please contact:

Chrome Communications, (905) 567-1406:

Alon Barmapov, ext. 223; (647) 405-1352; alon@chromecommunications.ca, or
Ashley Jennison, ext. 222; ashley@chromecommunications.ca


[1] D’Alonzo G, Barst RJ, Ayres SM, et al. Survival in patients with primary pulmonary hypertension. Ann. Int. Med 1991;115:343-49).

Click here to view a copy of the survey

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