"Invisibility" of the disease, delays in diagnosis and physical, social
and financial burdens among top challenges to be addressed
VANCOUVER, May 5, 2014 /CNW/ - Results released today from the Pulmonary Hypertension Association (PHA) of Canada's Patient and
Caregiver Survey reveal that Canadians with pulmonary hypertension (PH) are struggling
to live with the social, physical and financial burdens the disease
places on their lives. Respondents list social isolation, lack of
disease awareness and both physical and financial burdens as the top
challenges that need to be addressed.
Conducted online by Harris Poll on behalf of PHA Canada in late 2013,
the survey of 179 respondents (118 patients and 61 caregivers) is the
first of its kind conducted in Canada to measure the impact of PH - a
rare, debilitating, progressive and potentially fatal lung disease
affecting as many as 10,000 Canadians.
"We are grateful to the many Canadians who shared their experiences of
living with PH through this important research," says Angie Knott,
National Manager, Pulmonary Hypertension Association of Canada. "Their
feedback confirms that too many Canadians are still struggling to live
and cope with this rare and fatal disease and they have provided us
with valuable insights into what changes are needed most across the
country to improve lives."
Social isolation and relationship issues - for patients and caregivers
Every day, more than 70% of patients surveyed and more than 61%* of
caregivers surveyed experience social isolation and relationship
issues, which they attribute to the "invisibility" of the disease,
according to the PHA Canada Patient and Caregiver Survey. The general lack of awareness and understanding amongst their friends,
colleagues and the general public is the primary cause of these
feelings of social isolation.
In addition, the physical burden of the disease places many social
limitations on those affected by it, with seven in 10 patients surveyed
reporting they are unable to play with their children/grandchildren or
even help them with their homework. Caregivers are also impacted as
those surveyed spend more than half* of their time on activities
related to caring for their relative with PH.
"Every day has become a challenge since my PH diagnosis," said Loretta
Chu, of Toronto, Ontario, who has lived with PH for eight years. "When
you are dealing with symptoms that others cannot visibly see or relate
to, people are quick to misunderstand and even judge."
Physical limitations and reduced quality of life
The PHA Canada Patient and Caregiver Survey also reveals that 85% of patients surveyed experience mild to severe
symptoms or limitations with every-day activities such as walking and
climbing stairs. More than 40% of patients surveyed report frequently
suffering from fatigue, low energy and breathlessness, while another
37% suffer from sleep disorders.
These physical symptoms make it extremely difficult for patients to
continue living healthy, happy lives and force many, along with their
caregivers, to make dramatic changes to their lifestyle, including
their professional and personal relationships. Even with current
treatments, one-third of patients surveyed feel there are insufficient
medication options to optimally manage their PH.
Opportunity costs - impact on employment and income
Due to the physical limitations of the disease, patients also find it
very difficult to maintain their employment, with nearly 60% of those
surveyed reporting they are either no longer able to work at all or
have partially stopped working due to their PH. There is a similar
impact on caregivers too, with close to 40%* of caregivers forced to
make employment changes to care for someone with PH.
This inability to work carries enormous psychological and social
challenges, and also has a tremendous impact on the financial stability
of those affected by PH, many of whom are in their prime earning years.
Of those surveyed, nearly 90% of patients say that their income has
decreased by more than 25% due to their PH-induced change in
employment, with nearly half saying their income has reduced by 50% or
"The symptoms of PH, like chronic fatigue and shortness of breath, make
it extremely difficult to carry out every-day activities that most
Canadians take for granted," said Loretta Chu, who also leads a support
group for PH patients in Toronto. "This obviously makes it very hard to
maintain one's employment which brings not only financial income and
stability but also a sense of purpose, achievement and social
interaction. When all of this is taken from someone, the burden is
The killer waiting game - delays in proper diagnosis
Citing several reasons, including a lack of recognition of symptoms
among patients and their primary healthcare providers, the PHA Canada Patient and Caregiver Survey reveals that surveyed patients waited an average of three years for
proper diagnosis. While more than half of patients surveyed state that
their family doctor did not initially recognize the symptoms of PH and
refer them to the proper specialist, patients themselves suffered an
average of 31 and 44 months with breathlessness/dyspnea and
tiredness/fatigue respectively before even seeking medical attention.
"This survey has uncovered an alarming lack of awareness of PH and its
symptoms. Like many rare and fatal diseases, early diagnosis and access
to effective treatment can make an enormous impact on outcomes and
quality of life. We now know that we must do a better job of educating
both doctors and the general public in PH to help improve, and save
lives," said Dr. Sanjay Mehta, MD, FRCPC, FCCP, Professor of Medicine
at Western University, Director of the Southwest Ontario Pulmonary
Hypertension Clinic at the London Health Sciences Center in London,
Ontario and Chair of the Pulmonary Hypertension Association of Canada.
*Caution - small base (n<100). Results should be interpreted as
qualitative, or directional, in nature.
About Pulmonary Hypertension (PH)
Pulmonary hypertension (or PH) is a rare disease affecting the arteries
of the lungs. When an individual has PH, the arteries of their lungs
become narrowed and scarred. This can result in almost complete closing
of the arteries, which can lead to heart failure. Some symptoms of PH
are shortness of breath; bluish hands, feet and lips; swelling of hands
and feet; light-headedness and dizziness; chest pain; exhaustion and
fainting. Because it shares many symptoms with other diseases, PH is
often misdiagnosed. PH is a terminal disease for which there is
currently no cure.
About the Survey
Harris Poll conducted this online Burden of Illness survey across Canada
on behalf of PHA Canada between September 12 and October 25, 2013,
among a total of 179 respondents (118 patients and 61 caregivers).
Statistical comparisons were conducted at the 95% level of confidence
between groups where base sizes allowed. The average age of the
patients and caregivers who completed the survey was 51 and 47
respectively. Respondents completed online questionnaires developed by
PHA Canada with the guidance of a steering committee including PH
doctors, nurses, patients and caregivers. The survey was conducted by
Harris Interactive and funded by Actelion Pharmaceuticals Canada Inc.
through an unrestricted educational grant to PHA Canada. It is the
first survey conducted in Canada to measure the impact of PH on
patients and their caregivers, and has allowed a deeper understanding
of PH and the physical, psychological and emotional burden the disease
has on the lives of those affected by it.
Please visit www.phacanada.ca for more information and to locate your community support organization
for pulmonary arterial hypertension.
About the Pulmonary Hypertension Association of Canada (PHA Canada)
The Pulmonary Hypertension Association of Canada (PHA Canada) is a
national, registered charity. Our mission is to empower the Canadian
pulmonary hypertension community through awareness, advocacy,
education, research and patient support. PHA Canada is working to end
the invisibility and isolation often experienced by those living with
this life-changing disease. To learn more about PHA Canada and
pulmonary hypertension, please visit www.phacanada.ca.
SOURCE: Pulmonary Hypertension Association of Canada
For further information:
Cohn & Wolfe