SEVERE ASTHMA
THE CANADIAN PATIENT JOURNEY
A study of the personal, social, medical and economic burden of Severe Asthma in Canada
About the Asthma Society of Canada
The Asthma Society of Canada (ASC) is a national charitable volunteer-supported organization devoted
to enhancing the quality of life and health for people living with asthma and associated allergies through
education, research and advocacy. The ASC has a 40-year reputation of providing health education
services to patients and healthcare professionals.
Acknowledgements
The Asthma Society of Canada thanks those patients with Severe Asthma who participated in this study
through personal interviews or by responding to the on-line questionnaire. In addition, we thank our
Expert Advisory Panel members, Dr. Susan Waserman, Dr. Dilini Vethanayagam, Dr. Jason Lee, Dr. Céline
Bergeron and Dr. Clare Ramsay who assisted with definitions, screening instruments and the design
of both interview questions and the on-line survey instrument. Thanks are also extended to Rupinder
Chera, Darren Fisher, Noah Farber, Zachary Simbrow, Robert Price, Hiro Chavez, Marie Guney and Zhen
Liu who constituted the project’s technical team. Dr. Helen Reddel, of the Woolcock Institute of Medical
Research, Sydney, Australia and Chair, GINA Science Committee, offered helpful comments for the
final version of the report.Finally, thanks are extended to Novartis Pharmaceuticals Canada Inc., Roche
Canada and Boston Scientific Ltd. who provided educational grants to assist in this study and its report.
This report is dedicated to those patients with Severe Asthma who continue in hope for a better quality
of life.
© Asthma Society of Canada 2014
Registered charity number: 89853 7048 RR0001
124 Merton Street, Suite 401, Toronto, Ontario, Canada M4S 2Z2
asthma.ca
2
“The worst part of living with asthma used
to be that nobody believed me. It’s kind of
an invisible illness. You don’t always want
to say ‘I am not feeling well, I have asthma’
because there is still a stigma. Even when
you go to the hospital, they ask, ‘Well, how
bad is your asthma attack?’ What difference
does it make? An asthma attack is an
asthma attack and I need help, otherwise I
wouldn’t be here.”
A patient explaining the difficulty in getting treatment
3
Table of Contents
About The Asthma Society Of Canada..........................................................................................2
Acknowledgements.............................................................................................................................2
Executive Summary..............................................................................................................................6
What the Study Found..............................................................................................................................6
About the Study........................................................................................................................................7
Introduction..........................................................................................................................................8
Canada: An Asthma Nation.................................................................................................................9
The Economic Impact of Asthma.............................................................................................................9
Asthma And Severe Asthma.............................................................................................................10
What Causes Asthma?...........................................................................................................................10
Severe Asthma ......................................................................................................................................10
Severe Asthma: The Canadian Patient Journey......................................................................11
Findings: The Severe Asthma Patient Journey........................................................................12
Early Days...............................................................................................................................................12
Diagnosis and a Million Feelings............................................................................................................12
Quality of Life..........................................................................................................................................13
Managing Severe Asthma......................................................................................................................14
Surviving the System..............................................................................................................................14
The Burden of SA...................................................................................................................................14
One Patient’s Story: Robert’s Journey with Severe Asthma..................................................................15
Major Findings Of The Study..........................................................................................................16
Finding 1: SA is Not Well-Managed for Most Patients...........................................................................16
Finding 2: Inconsistent Diagnoses and Treatments Impair Quality of Care............................................17
Finding 3: Patients are Not Equipped to Manage their SA.....................................................................19
Finding 4: Financial Challenges Create Significant Barriers to Better Health Outcomes.......................20
Finding 5: SA Impairs a Patient’s Quality of Life....................................................................................21
One Patient’s Story: Margaret’s Journey with Severe Asthma...............................................................23
A Call To Action: Recommendations To Improve The Quality Of Life For People
With Severe Asthma............................................................................................................................24
For Professional Associations................................................................................................................24
For Doctors, Healthcare Professionals and Medical Researchers.........................................................24
For Patients............................................................................................................................................25
For Governments....................................................................................................................................25
For Employers........................................................................................................................................25
4
Appendix: The Study Methodology And Research Team.....................................................26
About the Study......................................................................................................................................26
About Participants..................................................................................................................................26
The Project Team....................................................................................................................................27
Expert Advisors......................................................................................................................................28
Ethics Review.........................................................................................................................................28
End Notes................................................................................................................................................29
References............................................................................................................................................30
5
Executive Summary
Asthma is a chronic inflammatory disease. A person experiences an asthma attack when his or her
airways become inflamed. This inflammation can produce symptoms including wheezing, shortness
of breath, coughing and tightness in the chest. In less severe events, asthma may present as a dry,
wheezing cough. In more severe cases, the person’s airways can become obstructed to the point of
making it impossible to breathe.
Asthma, the third-most common chronic disease in Canada, affects nearly 3 million Canadians. Severe
Asthma (SA), a more acute form of asthma and a greater threat to the health, impacts the health and
well-being of between 150,000 and 250,000 Canadians.1,2
Beyond the personal costs to human health, asthma has an enormous impact on Canada’s finances.
Asthma is the leading cause of hospital admission in Canada.3 Between 2010 and 2011, direct and
indirect costs associated with treating asthma topped more than $1-billion in Canada.3,4,5
What the Study Found
Severe Asthma is not well-managed for most patients.
yy For many, asthma is not controlled. Only 17% of the study’s respondents believe their asthma is well
controlled. Half believe their asthma is adequately controlled, 27% believe their asthma is not well
controlled and 7% don’t believe their asthma is controlled at all
Inconsistent diagnoses and treatments impair quality of care.
yy Not all healthcare practitioners can appropriately identify SA
yy Most patients rely on family physicians for care, but would prefer a specialist if they could access one
yy Access to specialists is limited
yy Healthcare professionals use inconsistent criteria and differing diagnostic techniques when diagnosing
and grading asthma
yy Asthma symptoms, control, treatment and management are not always discussed with healthcare
providers
yy A surprising number of patients are not receiving information about the newest kinds of therapies for
their asthma
Patients are not equipped to manage their SA.
yy Most patients have no written plan to manage their asthma
yy Many respondents do not carry their reliever asthma medication with them
yy Many patients are unsure about their therapy including proper use of inhalers and most do not use
spacers (or have ever been prescribed one by their physician) even if they regularly use medication by
pressurized metered-dose inhalers (pMDI)
yy While some patients could benefit from monitoring their Peak Expiratory Flow (PEF) with a meter, few
are maintaining electronic or paper records of PEF
Financial challenges create significant barriers to better health outcomes.
yy Many patients cannot afford their medication
yy Many insurance carriers do not provide complete coverage to asthma patients
6
SA impairs a patient’s quality of life.
yy SA limits physical activity
yy SA leads to decreased productivity
yy Asthma creates social barriers for some patients
yy SA attacks tend to be lengthy and costly
yy SA is an emergency condition for many patients
Recommendations
yy Establish a clear definition of SA based on new international guidelines
yy Promote physician adherence to asthma consensus guidelines
yy Ensure patients receive objective measures of lung function testing
yy Increase secure, cross-sector access and transfer of medical records to ensure consistency of care
yy Increase the number of respiratory and allergy specialists in Canada
yy Encourage more healthcare professionals to gain certification as Certified Asthma/Respiratory
Educators
yy Educate patients about diagnostics, treatments, triggers and management strategies through support
groups and educational programming
yy Encourage patients to use Asthma Action Plans and ensure compliance with prescribed medications
yy Ensure patients are aware of new therapeutic treatments for Severe Asthma
yy Increase interest in and funding for research into Severe Asthma and its many manifestations
About the Study
Severe Asthma: The Canadian Patient Journey, a study overseen by a panel of clinicians and academics
working in the field of Severe Asthma and conducted and published by the Asthma Society of Canada,
examined SA patients in three provinces to determine their experiences with the disease, the healthcare
system, compliance and course of treatment. The study used two methods: a qualitative survey and
an online-based quantitative survey. The study was funded in part by educational grants from Novartis
Pharmaceuticals Canada Inc., Roche Canada and Boston Scientific Ltd.
7
Introduction
If you have asthma, you know what it’s like to struggle to breathe. And if you have Severe Asthma, you
know what it feels like to drown.
Severe Asthma (SA) is a more severe, more lethal form of asthma. It is a chronic condition that impairs
a person’s ability to breathe, work and live a happy, healthy life. As many as 250,000 Canadians suffer
from SA, and despite SA’s prevalence6, its burden on the Canadian health system has neither been wellunderstood from the patient perspective nor well-recognized within national and regional health system
priorities.
This study, Severe Asthma: The Canadian Patient Journey, is the first patient study to look
specifically at how this disease impacts the lives of everyday Canadians who have SA. This study uses a
mixed method approach consisting of qualitative and quantitative methodologies to examine the patient
experience of SA. What this study shows will startle anybody involved in Canadian healthcare:
yy SA reduces the social, financial and health outcomes for people with the disease. It is severe enough
to have a noticeable impact on the Canadian economy.
yy SA is generally poorly understood and diagnosed, and inconsistently managed by healthcare
providers.
yy Treatment of SA is hindered by availability of specialists and misdiagnoses.
yy New treatment options, though still relatively limited, are not well-known by patients and often not
made available to them by physicians.
This study provides new baseline data about the patient experience with SA that we can use to monitor
our improvement in caring for people with this life-threatening disease. It examines the prevalence
and burden of SA, outlines the needs and expectations of patients with SA and offers insight into why
patients comply or don’t comply with asthma management plans.
This study is a call to action. It is the first step towards establishing national, provincial and territorial
perspectives on the social and economic impact of SA in Canada for governments, researchers,
industry, and health care providers to offer a response. The recommendations at the end of the study
deliver a way forward for patients with SA.
The good news in this report is that SA is a disease Canadians have the possibility to control. We need
more research into SA, more attention to the issue by doctors and government, and better resources to
educate patients about how to manage their disease.
If we can rally against SA, we will save lives and improve the quality of life for hundreds of thousands of
patients and their family members. All we need to do is act.
Sincerely,
Robert Oliphant, President and CEO
Asthma Society of Canada
8
Canada: An Asthma Nation
Few diseases touch as many Canadians as asthma does. Visit the synagogue, church or mosque, stand
in line at the corner coffee shop, or step onto the city bus and somebody close will have some form
of asthma or know somebody with the disease. Asthma impacts the lives of Canadians of every age,
gender, ethnicity, in every town and city in every province and territory.
yy Asthma is the third-most common chronic disease in Canada. It affects 2.4 million Canadians over
the age of 12 (8.5 per cent of the population) and another 490,000 children between the ages of 4 and
11 (15.6 per cent of children in this age bracket).7,8
yy Severe Asthma impacts the health and wealth of even more Canadians. It is estimated that
between 150,000 and 250,000 Canadians who have asthma suffer from SA, a more severe form of
asthma and a greater threat to the health of these Canadians.9
yy Many asthma patients do not have control over their asthma. Fifty-three per cent of Canadians
with asthma have what doctors call “poorly controlled” asthma. This means that their treatment is
ineffective. Poorly controlled asthma lowers the health outcomes and the quality of life for these men,
women and children.10,11,12,13
yy Asthma hits Aboriginal Canadians hardest. Asthma is 40 per cent more prevalent among First
Nations, Inuit and Métis communities than in the general Canadian population.14
yy Asthma kills. Approximately 250 Canadians die each year from asthma.15 Around the world,
approximately 250,000 people die prematurely each year because of asthma.16
The Economic Impact of Asthma
Along with lowering the quality of life for people with it, asthma levels a huge expense to the Canadian
healthcare system and individual Canadians. These costs are mostly reactive – that is, they are costs
incurred to deal with a patient after an asthma attack.
yy Asthma is the leading cause of hospital admission in Canada. In 2011, Canadian emergency rooms
dealt with 64,526 asthma-related events. Of these visits, nearly 27,000 patients were under the age of
19.17 A recent study shows that 30 per cent of respondents reported having one or more emergency
department visits each year.18
yy Asthma is a billion dollar problem in Canada. According to the Conference Board of Canada, the
cost of hospitalization for asthma in 2010 was $250,728,024. The physicians who cared for these
patients cost $196,321,334. The cost of asthma medication in 2010 was $535,681,566. Indirect costs
associated with asthma, including decreased productivity, are estimated at $646 million.19,20,21,22,23
9
Asthma and Severe Asthma
What Causes Asthma?
Asthma is normally defined by symptoms rather than its underlying cause or causes. The causes
of asthma are not presently known and appear to be very complex. Genetics, allergic reactions,
hormonal changes, obesity, stress, exercise and environmental conditions can contribute to asthma
or trigger asthma attacks. But asthma can also erupt spontaneously in some people. The symptoms
of asthma can recede without treatment, but often a person experiencing asthma will need treatment—
medication or hospitalization—before they will be able to breathe comfortably on their own. Crucial
research is still needed to help us understand why certain people are prone to asthma, and what types
of asthma there are.
10
Severe Asthma
Defining Severe Asthma is not easy. From the patient perspective, this difficulty presents a barrier
to better management of asthma. The difficulty in defining SA creates inconsistencies within clinical
practice guidelines, clinical practice and medical literature.
Since 1996, Canadian clinical practice guidelines have used the concept of an asthma continuum—with
an emphasis on “control of symptoms” rather than on “severity of the disease.”24 For the most part, the
concept of severity is used with respect to level of control, degree of symptoms and number and severity
of exacerbations, as in “severely uncontrolled asthma.” However, SA is not clearly defined as distinct
from mild or moderate asthma as it is in reports of the European Respiratory Society and American
Thoracic Society.25 Yet, the term “severe asthma” continues to be used by Canadian physicians without
a clear and consistent definition.
When SA is defined in the literature, it is based on the minimum medication required to achieve adequate
asthma control, rather than by the symptoms themselves, or on objective testing of lung functions. A
large body of evidence indicates that patients have widely different understandings of asthma control
and thus control can become meaningless as diagnostic evidence.26
Newer research—including the research presented later in this report—shows that patients experience
SA as a chronic, persistent yet intermittent disease, sometimes controlled and sometimes uncontrolled.
Like many health problems, asthma exists on a severity spectrum. For some people, asthma is a
challenge that is easily treated with medication. For others—those people suffering from SA—asthma is
a chronic, life-threatening condition that requires more aggressive medication and often times medical
care. The patient experience of life with SA is qualitatively and quantitatively different from other
expressions of the disease.
For the purposes of this study, SA is defined as:
Continued asthma symptoms, frequent worsening of asthma symptoms, and asthma
attacks among patients who take multiple asthma medicines with a high degree of
compliance and good trigger management. Additionally, SA is the experience of patients
who are not necessarily therapy resistant, but whose asthma is difficult to control and
manage and requires a different level of care than milder versions.
The patient experience of SA is diverse. This diversity suggests that SA is not a single disease. There
appear to be many types of asthma or “phenotypes” that may have similar symptoms but different
physiological or biological characteristics.27,28 Much more research will be needed to move SA from a
symptom-based diagnosis primarily related to the amount of medication used to reach control (or not) to
an objectively defined condition with effective strategies for each of its manifestations.
11
Severe Asthma:
The Canadian Patient Journey
Severe Asthma remains one of the least understood and least studied manifestations of asthma.
To examine the complex health, social and economic issues related to SA, the Asthma Society of
Canada conducted a study of Canadians about their experience with SA. The study, which included
in-depth interviews as well as an on-line survey, was conducted in the summer and fall of 2013. It sheds
light on how SA, controlled and uncontrolled, affects a patient’s quality of life, expectations for the future,
medication preferences and experience with the healthcare system.
All participants in the study were Canadian adults 18 years and older who live with severe, controlled or
uncontrolled, asthma. All potential participants were evaluated through a strict screening process and
only qualified applicants were interviewed.
The following pages detail the insights gathered from this new study of SA in Canada.
12
Findings:
The Severe Asthma Patient Journey
Life with SA is an arduous and confusing journey. While no single story exists to describe the journey,
many of the respondents interviewed shared similar life experiences.
Early Days
Every person participating in this study has SA. Many participants were diagnosed with childhood
asthma and most had early breathing problems. As one interview participant explains, childhood
revolved around the hospital: “Until I was six years old I spent a lot of time in the hospital with an IV
stuck in my arm because of my asthma. I always had asthma. I think I’ve always known it was severe. It
was just a part of growing up, going to doctors all over the place.”
Diagnosis and a Million Feelings
For many who suffer with ineffective asthma treatments, the correct diagnosis of SA is often upsetting
and usually doesn’t come until adulthood. One man explains his frustration at living for so long with an
improper diagnosis: “I didn’t get diagnosed until later in life. Part of me is angry that no one figured it out
before to explain why I couldn’t be physical, like go running.”
The interviews also uncovered a troubling fact about
SA: it is known by multiple names, like “strong
asthma,” “complicated asthma,” “brittle asthma,”
“difficult to control asthma” or “refractory asthma”
rather than a single diagnostic name, “SA”. This
can lead to misdiagnoses. One patient interviewed,
said that his first diagnosis attributed his breathing
troubles to his premature birth. The second
diagnosis categorized his breathing problems as
“severe COPD.” After ten years, he received the
correct diagnosis—SA—and started receiving
an effective treatment. But until that time, his SA
lowered his quality of life.
In several cases, patients were never officially told
that they had SA. They only found out after a referral
to an asthma clinic or after discussing treatment
options. And for many, the frustration of learning
about their SA diagnosis doubles when they
discover that they’ve been left out of the decisionmaking. One interviewee explains his experience:
“My first pulmonologist simply said, ‘Yeah, you have
asthma,’ and put me on steroids. I felt like I needed
more support and wanted more accurate testing but
I lacked confidence to talk to him. I felt that I was
not involved in the decision-making.”
13
What an SA Diagnosis
means for Patients
yy “It was a good feeling to know that I had
a diagnosis and, because it was specific,
it was helpful for me. But at the same time
it was sad, knowing that it’s a chronic
condition that I am still in denial about.
There are a lot of questions I have so in a
sense I feel worse since the diagnosis.”
yy “I was diagnosed with asthma many years
ago at 19. I was diagnosed with Severe
Asthma five years ago [at 48]. I don’t
love my asthma, but it was familiar, and
something that was familiar turned into
something dangerous.”
yy “When I found out I had asthma I felt like
I was drowning: I was having difficulty
breathing which made me feel like I was
struggling under water. Everything was so
overwhelming that I didn’t know where to
turn or what to do.”
Quality of Life
A chronic condition, SA limits social activities and
can lead to a decline in general health. People with
SA remark about how the condition isolates them—
it is hard to stay social when one has unpredictable
flare-ups—and it becomes hard to stay active when
physical exertion exacerbates SA.
The physical toll often has a social toll, and it is
not uncommon to hear SA patients lament how
diminished they feel about themselves and how SA
strains their family life. One man says that SA keeps
him from doing the things he loves. “I’m just so tired
that I can’t do anything anymore. Severe Asthma
has changed everything,” he says.
But where family is supportive and understanding,
patients with SA often find their colleagues and
coworkers unsupportive and frustrating. One
respondent says she keeps her SA a secret because
she doesn’t want her boss to think it inhibits her job
performance. Another person describes some of
the ridicule she faces because of her SA: “People
at work will make jokes about it. ‘Oh, Phyllis is here,
we can hear her puffing.’ ”
Allergy and Asthma
Education and Support
Program
The Asthma Society of Canada provides
education and support to people with
asthma and associated allergies through
information provided by Certified Asthma/
Respiratory Educators. Call 1-866-787-4050
or email info@asthma.ca to get help today.
Many people lack sympathy with SA patients because they don’t understand the threat SA poses—they
are unaware that it is a life and death issue. The stress and anxiety that the threat SA poses shouldn’t be
discounted by anybody. It is real.
“I remember a family doctor telling me that if I didn’t have my medications with me, I could die,” says
one respondent. “Now I worry about being in an emergency situation, such as stuck in a subway in the
heat, I could die.”
Managing Severe Asthma
Many patients report going through several years of trying different drugs before finding the medication,
or combination of medications, that will keep their asthma manageable. Some participants report having
spent up to seven years experimenting with treatments before finding the right one.
Not uncommon was one participant’s journey through pharmaceutical treatment. Her doctors
experimented with Beclovent, Pulmicort, Prednisone, Singulair, Advair, Ventolin, Spiriva, Qvar, Medrol
and finally Xolair. Finding the right medication combination took close to eight years.
The expense of medications causes additional stress for many patients. A significant number of
participants did not have complete coverage (if any) and reported skipping or delaying their prescription
until they could afford it. One participant indicated that he simply cannot afford the treatment
recommended by his doctor.
“Asthma is very expensive,” explains one participant. “People don’t realize how much the asthma drugs
cost. When you are on a disability pension, even when insurance covers three-quarters, the other 25%
kills you.”
14
Surviving the System
Severe Asthma Lowers
Expectations for a Whole,
Healthy Life
Many participants spoke about the difficulty of
maintaining consistency in their treatment. One
participant who moves regularly says he has trouble
finding a family doctor each time he moves and
finds it difficult to update doctors about his long
and complicated medical history. Some doctors
treat asthma, even SA, as a low-priority condition—
it is the concern to get to last, even though for
many patients it is the most significant threat to
their health.
yy “As a young adult, I felt like the sky was
the limit. Now, I’m still breathing and I see
a whole lot, but I’m not sure if I’m actually
going to make it out there.”
yy “Every time something happens I feel
surprised because I don’t think about
it otherwise. When I am affected by
symptoms I am not happy, I feel like I am
drowning and I have to start the process
again, figuring out which meds they want
to try and what will work this time.”
Another SA patient interviewed for the study said
that few support services and educational tools
exist to help SA patients navigate the complex
medical system: “If you are not connected to the
right system, right facility or right doctor, you will be
naïve and lost.”
yy “People tell me to call 9-1-1 if I have a
bad attack, but I can’t breathe. How can I
make a telephone call?”
A key ally to the SA patient is the Certified Asthma
Educator, say respondents to the study. Those
who see a Certified Asthma Educator learn how to
manage their asthma and treatment regime, and
stay motivated.
Severe Asthma Patient
experiences with the
healthcare system
yy “I was sitting in the emergency waiting
room for over three hours and when the
doctor did see me he was freaked out
that I was there so long because I was
coughing so badly. I just kept telling them,
‘Just give me the mask with the Ventolin.
That’s what I need and as soon as you do,
I’ll be better.’ But they just looked at me
because they are not allowed to do it, and
I waited and kept coughing.”
The Burden of SA
SA is a progressive disease, often becoming
more difficult to treat as the patient ages. “Back
in my 20s and through my 30s medications and
treatments worked, but it got worse when I got
in my 40s,” explains one respondent. Not only
does SA become more challenging to treat over
time, but respondents say it becomes a bigger
and bigger issue in life, demanding more attention
and causing more stress. In younger years, says
another respondent, SA didn’t seem like a big
issue—it was, at most, a looming question. “But
it has turned into a big thing as I get older. I am
getting scared,” says the respondent.
yy “The frustration comes when I end up in
the hospital or emergency and they can’t
contact my doctor to find my routine. It’s
up to me to remember all of the drugs
and often to update my doctor later about
what happened.”
15
One Patient’s Story:
Robert’s Journey with Severe Asthma
The SA Journey Today
Severe Asthma has heavy costs—to the
pocketbook and to family life.
Over the years, Robert has lived in different
cities and different provinces and had a series of
doctors to help him care for his disease. Today,
he has a healthcare team that works together to
review his medications and keep him on track
with his Asthma Action Plan. His daily slate of
medication includes Ventolin twice a day, Advair,
Atrovent, Prednisone and other medications. He
says he is lucky that the only side effect of this
arsenal of medications is the occasional yeast
infection in the mouth.
“I can’t work. I can’t bring money in,” says Robert,
a 51-year-old man living near Edmonton.
Robert has SA, a chronic condition that sidelines
him with breathlessness and the feeling of
suffocation. SA prevents him from spending time
outdoors with his son and maintaining a steady
career.
“I can’t even take my son hiking because of my
health,” he says. “My limitations affect other
people and it makes me angry that I can’t do the
things others can and that I used to be able to
do.”
“My asthma is controlled the best it can be,” he
says. “It’s not getting better and it will only get
worse. But we are keeping at it.”
A Lifelong Journey
Bureaucratic and Geographic Barriers to
Health
Robert, now 51, was first diagnosed with asthma
as an infant. By age 7, doctors found a way to
control his asthma enough for him to participate
in childhood activities, although never any typical
endurance sports. As a teenager and a young
adult, he experienced chest infections every
couple of years.
Robert’s healthcare plan doesn’t make it easy for
him to manage his health. The plans only let him
purchase a 30-day supply of his medications, and
he can only renew his prescriptions when he nears
the end of his supply.
Robert’s condition changed when he entered his
30s. He ended up in hospital at least once a year
because of asthma attacks. Doctors gave him a
variety of diagnoses for his breathing troubles.
Some said he had malformed lungs and others
said he had severe COPD.
A rural Canadian, Robert often worries whether
he will have his medication when he needs it.
The pharmacy can run out of stock or a heavy
snowstorm or flooding can prevent him from
making the trip to the pharmacy.
Without his medication, Robert’s life is
endangered. It is a monthly stress he has to live
with—a stress created by policies that look good
on paper but work badly in practice.
It wasn’t until he met a respirologist with an
expertise in SA that Robert received an accurate
diagnosis—he had SA and required a different
kind of treatment to keep him healthy.
“I think I’m getting the best I can out of the
healthcare system right now,” says Robert, “but
the whole healthcare system is not the way it
should be.”
Breathe Easy
SELF-ADVOCACY GUIDE FOR
CANADIANS WITH ASTHMA
The Asthma Society of Canada has published
a patient self-advocacy guide to help people
with asthma navigate the complex Canadian
healthcare system. Copies are available at
asthma.ca
16
Major Findings of the Study
This study revealed five significant findings:
1.SA is not well-managed for most patients.
2.Inconsistent diagnoses and treatments impair the quality of care.
3.Patients are not equipped to manage their Severe Asthma.
4.Financial challenges create significant barriers to better health outcomes.
5.SA significantly impairs a patient’s quality of life.
Finding 1: SA is not well-managed for most patients
0
Do you believe your asthma
Well Controlled
study. The
is... SA is a regular—and often a sudden—health crisis for most of the respondents to the ASC
1
Adequately Controlled
Well Controlled study found that:
17%
2
Not Well Controlled
3
Adequately Controlled
48%
yy For many, asthma
is not
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asthma is
4
Not Well Controlled
27%
Not Controlled At All
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How many asthma attacks
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0
1
2
3
4
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More than 5
More than 10
Don’t Know
9%
8%
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7%
4%
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18%
32%
0%
Very Mild
Mild
Moderate
Moderately Severe
Severe
Don’t Know
0%
10%
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More than 10
Don’t Know
10%
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More
More
Respirologist
21%than 10
25%
Don’t
Hospital
1% Know
0%
Community Clinic
5%
0%
0%
10%
d
Certified Asthma/Respiratory Educator
3%
9%
Pharmacist
1%
1%
d
olled
Yes
10%
20%
30%
40%
50%
68%
Who do you feel is best suited to be your primary source of care for your asthma?
How many asthma attacks have you had
in the past 12 months?
olled
0%
40%
50%
Family DoctorMost respondents (70.4%) say their symptoms
yy Asthma symptoms come on with little warning.
Respiratory Specialist
come on with little or no warning. Only 3.1% indicate this doesn’t happen at all.
Thinking specifically of
Respirologist
y Daytime
symptoms are frequent. Three-quarters
of respondents experienced daytime symptoms
your asthma, howyhas
your
Hospital
physician most recently
(coughing, wheezing, chest tightness, shortness
of breath) more than two days a week in the previous
Community
Clinic
describe the level of
Certified
centAsthma/Respiratory
experienced Educator
these symptoms multiple times per day.
severity? four weeks. Thirty-five per
Pharmacist
Very Mild
0% happen as often as monthly
yy Asthma attacks
for people with Severe Asthma. Half of respondents
Mild
6%
0% 128%
15% A third
23% of
30%
38%
45%
have had more
than five asthma attacks in the previous
months.
respondents
have53%
had 60%
Moderate
15%
more than 1027%
attacks.
Who is your primary source of care for your asthma
Moderately Severe
e
e
e
w
30%
20%
17
30%
40%
50%
75%
ma
cks
12
ma
cks
12
f
our
y
f
our
y
Finding 2: Inconsistent diagnoses and treatments impair the
quality of care
This study identified areas where the doctor-patient relationship thrives—and where it needs improvement.
yy Not
all healthcare practitioners
can appropriately identify SA. All of the respondents
0 to this study
Do you believe your
asthma
Well Controlled
is...
have SA, as identified by
the Canadian
Consensus Guidelines. But, when asked, 21% 1of respondents
Adequately
Controlled
Well Controlled
17%
2
said their physician
described
asthma as “Mild” or “Moderate.” More than a quarter
Not Welltheir
Controlled
3 (27%)
Adequately Controlled
48%
described
their
asthma
as
“moderately
severe.”
4
Not Well Controlledreported that their
27% physician
Not Controlled At All
0
Well Controlled
5
Not Controlled At All
8%
0
1
2
3
4
9%
0%
10%
40%
50%
20%
30%
40%1
50%
More than 5
More than 10
Don’t Know
2
Thinking specifically of your asthma,
3
how has your physician most recently
4
describeD the level of severity?
Adequately Controlled
17%
Not Well Controlled
48%
How many asthma attacks
27%
Not12Controlled At All
have you
had in the past
8%
months?
0%
Very 30%
Mild
20%
Mild
Moderate
Moderately Severe
Severe
Don’t Know
10%
8%
10%
7%
Very Mild
4%
Mild
4%
Moderate
18%
Well Controlled
Moderately Severe32%
Adequately Controlled
Severe 8%
yy Most
rely
on family
Not Don’t
Well Controlled
Know
0%
5
More than 5
More than 10
Don’t Know
0%
10%
20%
30%
10%
40%
20%
30%
50%
9%
5
8%
0%
10%
20%
30%
40%0 50%
More than
10%5
1
More than
7%10
17%
2
Don’t Know
4%
physicians for care, but
if they could access one.
Familywould
Doctor prefer a specialist
3
48%
4%
The
ASC
study
showed
that
most
respondents
(56.7%)
said
their
family
doctor
is their primary source
Respiratory
Specialist
4
27%
10%
20%
30%
40%
50%
Controlled At 0%
All
18% specificallyNot
Thinking
of
8%
of care
for their asthma. Most (64.9%) said Respirologist
they felt a respiratory5 specialist or respirologist would be
32% how has your
0%
10% 20% 30% 40% 50%
your asthma,
More than 5
better suited as their source of primary care forHospital
their asthma.
physician
8% most recently
More than 10
Community
Clinic
Family Doctor
describe theylevel
of
y Access
to specialists
isCertified
limited.
Only 31.6% of respondents
said they had access to a respiratory
Don’t Know
Asthma/Respiratory Educator
severity?
Respiratory Specialist
0% indicated
10%
20%
30%access
40% to a
50%
specialist and only
41.1%
had
access
to
a
respirologist.
Only
33.7%
they had
Pharmacist
Very Mild
0%
Respirologist
Very Mild
community
asthma
clinic
and
only
22.1%
had
access
to
a
Certified
Asthma/Respiratory
Educator.
A
Mild
6%
0%
8%
15%
23%
30%
38%
45%
53%
60%
68%
Hospital
9%
Mild15%
Moderate
Community
Clinic
third of respondents
had access
to a pulmonary lab.
8%
Moderate27%
Who is your primary source of care for your asthma
Moderately Severe
Certified Asthma/Respiratory
Educator
10%
Who do you feel is best suited to be your primary source of care for your asthma?
Moderately Severe36%
Severe 0%
Pharmacist
7%
Severe16%
Who
is
your
primary
source
of care
for
your
asthma?
Don’t Know
6%
4%
0%
8%
15%
23%
30%
38%
45%
53%
60%
68%
75%
Don’t Know
15%
4%
0% Who
10% is your
20% primary
30% source
40% of50%
care for your asthma?
27%
18%
Who
is do
youryou feel
Whoisdo
you feel
is to be your primary source of care for your asthma?
Who
best
suited
36%
32%
primary source of
best suited to be
16%
care for your
your primary source
8%
Family
asthmaDoctor of care for your
asthma?
Respiratory Specialist
Family DoctorWho is your
56%
25%
Who do you feel isRespirologist
source of
best suited to be
Respiratoryprimary
Specialist
13%
40%
Hospital
your primary source
Respirologist care for your
21%
25%
Community Clinic
asthma
of care for your
Hospital
1%
0%
Certified Asthma/Respiratory
Educator
asthma?
Community
5%
0%
0% Clinic
56%
25%Pharmacist
Certified6%
Asthma/Respiratory
3% 0%
9%
13% Educator
40%
8%
15%
23%
30%
38%
45%
53%
60%
68%
75%
Pharmacist
1%
1%
15%
21%
25%
27%
36%
Yes
atory Educator16%
1%
5%
3%
1%
Who
is your primary source of care for your asthma
0%
Who
do you feel is best suited to be your primary source of care for your asthma?
0%
9%
1%
No Who is your
Who do you feel is
primary source of
best suited to be
care for your
your primary source
asthma
of care for your
asthma?
Don’t Know
56%
25%
13%
40%
0%
8%
15%
23%
30%
38%
45%
53%
60%
68%
75%
21%
25%
1%
0%
Were you referred
for any breathing
testing (pulmonary functions, spirometry, methacholine challenge)?
0%
Did you discuss5%
the benefits of a written
Asthma Action Plan?
atory Educator
3%
9% to take your inhaler medication?
Were
you
asked
to
demonstrate
how
8%
15%
23%
30%
38%
53%
60%
68%
75%
1%45%
Did you feel you1%
had access to information
and services for newer treatments for severe asthma?
Were you testing
referred(pulmonary
to an asthma
education
program?
red for any breathing
functions,
spirometry,
methacholine challenge)?
ss the benefits of a written Asthma Action Plan?
18
ed to demonstrate how to take your inhaler medication?
ou had access
to information
and services
newer
for severe
Prior to your
Were you referred
Did youfor
discuss
thetreatments
Were you asked
to Didasthma?
you feel you had
red to an
asthmaofeducation
program?
diagnosis
for any breathing
benefits of a written demonstrate how to
access to
asthma,
testing (pulmonary Asthma Action Plan?
functions,
spirometry,
take your inhaler
medication?
information and
services for newer
treatments for
Were you referred to
an asthma
education program?
40%
75%
Well Controlled
Adequately Controlled
Not Well Controlled
Not Controlled At All
How many asthma attacks
have you had in the past 12
months?
0
1
2
3
4
5
More than 5
Do you believe your asthma
More than
10
is...
Know
WellDon’t
Controlled
Adequately Controlled
Not Well
Controlled
Thinking
specifically of
Not your
Controlled
Athow
All has your
asthma,
physician most recently
describe the level of
severity?
How many asthma
attacks
Very
Mild
have
you
had in the past 12
Mild months?
0 Moderate
1 Moderately Severe
2 Severe
3 Don’t Know
4
5
More than 5
More than 10
yy Healthcare
Don’t Know professionals
17%
48%
27%
8%
9%
8%
10%
7%
4%
4%
18%
32%
17%8%
48%
27%
8%
Adequately Controlled
2
3
4
5
More than 5
More than 10
Don’t Know
Not Well Controlled
Not Controlled At All
0%
10%
20%
30%
40%
50%
0%
Very Mild
Mild
Moderate
Moderately Severe
Severe
Don’t Know
Well Controlled
0%
10%
20%
30%
40%
50%
Adequately Controlled
Family Doctor
Not Well ControlledRespiratory Specialist
Not Controlled At All
Respirologist
0%
10% Hospital
20% 30%
Community Clinic
Certified Asthma/Respiratory Educator
Pharmacist
40%
50%
0
1
2
3
4
5
More than 5
More than 10
Don’t Know
10%
0%
0%
10%
20%
6%
0%
8%
15%
23%
30%
38%
45%
53%
Very Mild
9%
15%
Mild
Who is your primary source of care for your asthma
8%
27%
Moderate
Who do you feel is best suited to be your primary source of care for yo
10%
36%
Moderately Severe
7%
16%
Severe
4%
Don’t Know
4%
0%you feel
10%
20%
30%
40%
50%
Who is your
Who do
is
18%
primary source of
best suited to be
32%
care for your
your primary source
use8%
inconsistent
and
diagnostic techniques when
asthma criteria
of care
for differing
your
Family Doctor
asthma?that only half of respondents reported
diagnosing and grading asthma. The ASC study showed
Respiratory Specialist
Family Doctor
56%
25%
beingThinking
givenspecifically
any lungof function or other pulmonary
tests priorRespirologist
to
their diagnosis. Tests often don’t
Respiratory Specialist
13%
40%
your asthma,
how has
your testing or elementary objective lung function
Hospital tests such as spirometry.
include
standard
allergy
Respirologist
21%
25%
physician most recently
Community
Clinic
yy Asthma
symptoms,
are
describe
the level of control, treatment and management
Hospital
1%
0% not always discussed with
Certified
Asthma/Respiratory
Educator
severity?
Community
Clinic
5%
0%
healthcare providers. Less than half of respondents said they discussed proper inhaler techniques
Pharmacist
Very
Mild
0%
Certified
Asthma/Respiratory Educator
3%
9%
(40%),
Asthma
Action Plans (30.5%)
and the benefits
and risks
of an inhaled
steroid
medication
MildPharmacist
6%
0%
8%
15%
23%
30%
38%
45%
53%
6
1%
1%
(38.9%)
with a healthcare professional
in the past year. Only 27.4% of respondents were asked if they
Moderate
15%
is your primary
source
caredoctor
for yourmakes
asthma
Severe
27%
hadModerately
any concerns
about their medications.
Only 62.2% of Who
respondents
agree
that of
their
Who do you feel is best suited to be your primary source of care for your
Severe
36%
sure they areYesusing their medication properly. Don’t Know
16%
yy A surprising number of patients are not receiving information about the newest kinds of
therapies for their asthma. Only 27.4% of respondents felt that they had access to information and
No
Who
Who do you
feel is
services for newer treatment options
foris your
SA. Patients
knew
little about new biologics available for
primary source of
best suited to be
treatment of SA and none had heard
offorbronchial
care
your
yourthermoplasty
primary source despite its availability in several centres
asthma
of care for your
geographically
Don’t Know near interview participants.
asthma?
Family Doctor
56%
25%
0%
8%
15% Prior
23%to
30%diagnosis
38%40%
45%
53%
60%
68%
75%
Respiratory Specialist
13%
your
of asthma,
Respirologist
21%
25%
spirometry, methacholine challenge)?
Hospital Were you referred for any breathing testing
1% (pulmonary functions,
0%
Did
you discuss the benefits of a written5%
Asthma Action Plan?
Community
Clinic
0%
Were you askedEducator
to demonstrate how to3%
take your inhaler medication?
Certified Asthma/Respiratory
9%
PharmacistDid you feel you had access to information
1% and services for
1%newer treatments for severe asthma?
Were you referred to an asthma education program?
Yes
Prior to your Were you referred Did you discuss the Were you asked to Did you feel you had Were you referred to
diagnosis of for any breathing benefits of a written demonstrate how to
access to
an asthma
asthma,
testing (pulmonary Asthma Action Plan?
take your inhaler
information and
education program?
No
functions,
medication?
services for newer
spirometry,
treatments for
methacholine
severe asthma?
challenge)?
Don’t Know
Yes
31%
30%
39%
27%
28%
No
49%
65%
61%
47%
69%
0%
8%
15%
23%
30%
38%
45%
53%
60%
68%
Don’t Know
20%
5%
0%
26%
3%
75%
Were you referred for any breathing testing (pulmonary functions, spirometry, methacholine challenge)?
Did you discuss the benefits of a written Asthma Action Plan?
Do you have an
Were you asked to demonstrate how to take your inhaler medication? Asthma Action
Did you feel you had access to information and services for newer treatments
Plan?”for severe asthma?
referred to an asthma education program?
Yes,Were
I use ityou
regularly
23%
Yes, but I have not used it or updated it in a long time
28%
19
No, I have never had an Asthma Action Plan because I don’t feel they are effective
10%
No, I have never heard of an Asthma Action Plan
39%
Prior to your Were you referred Did you discuss the Were you asked to Did you feel you had Were you referred to
diagnosis of for any breathing benefits of a written demonstrate how to
access to
an asthma
use it regularly
asthma,
testing (pulmonary Asthma Action Plan?
take your inhaler Yes, Iinformation
and
education program?
3%asked to demonstrate
9%
Were you
how to take your inhaler medication?
1%
Did you1%
feel you had access
to information and services for newer treatments for severe asthma?
Were you referred to an asthma education program?
ed Asthma/Respiratory Educator
macist
Yes
Prior to your Were you referred Did you discuss the Were you asked to Did you feel you had Were you referred to
diagnosis of for any breathing benefits of a written demonstrate how to
access to
an asthma
asthma,
testing (pulmonary Asthma Action Plan?
take your inhaler
information and
education program?
functions,
medication?
services for newer
spirometry,
treatments for
Know
methacholine
severe asthma?
challenge)?
0%
8%
15% Yes 23%
30%
38%
45%
53%30% 60%
68% 39% 75%
31%
27%
28%
No
49%
65%
61%
47%
69%
Were you referred for any breathing testing (pulmonary functions, spirometry, methacholine challenge)?
Don’t Know
20%
5%
0%
26%
3%
No
Finding 3: Patients are not equipped to manage their SA
yy Most patients have no written plan to manage their asthma. A variety of studies have shown that
the promotion of these
use an Asthma Action Plan
Asthma Action
or an Asthma Diary and 39% have never heard of these
Plan?”tools. While many patients do not use a plan,
Yes, I use it regularly
23%
62%
of
respondents
feel
that
an
electronic
version
of
an Asthma
Action Plan would be most useful.
but I have
used
it or
updated
it in
a long
time
Were you referred DidYes,
you discuss
the notWere
you
asked
to Did
you
feel you
had Were you referred to
28%
for any breathing benefits
of
a
written
demonstrate
how
to
access
to
an
asthma
Additionally,
only
27.4%
of
respondents
were
referred
to
an
asthma
education program by their doctor.
No, I have never had an Asthma Action Plan because I don’t feel they are effective
10%
testing (pulmonary Asthma Action Plan?
take your inhaler
information and
education program?
Did you discuss the benefits of a written Asthma Action Plan?
an how
Asthma
Action
Plan can help patients manage asthma at home. Despite
Were you asked to demonstrate
to take your
inhaler medication?
Did you feel you had access to information and services for newer treatments for severe asthma?
Do you have
an of respondents
plans
by
leading
respiratory
health organizations, only
23%
Were you referred to an asthma education program?
r to your
nosis of
thma,
No, I have never heard
of an Asthma Action
Plan
medication?
services
for newer
functions,
spirometry,
methacholine
challenge)?
31%
Yes, I use it regularly
Yes, but I have not used it or updated it in a long time
30%
39%
27%
28%
No,
an Asthma Action 47%
Plan because I don’t
feel they are effective
65%I have never had61%
69%
No, I have
5%
0%
26% never heard of an
3%Asthma Action Plan
49%
20%
Know
39%
Do you have an Asthma Action Plan?
treatments for
severe asthma?
0%
10%
20%
30%
40%
50%
Do youcarry
have an
yy Many respondents do not
their reliever asthma medication with them. A variety of reasons
Asthma Action
Plan?”
What
is the main
were
suggested
for
this
including
not
filling prescriptions, not having access to multiple inhalers or
reason you23%
might
use it regularly
stop or not
take a trigger or predicting an exacerbation.
ut I have not used it or updated it in simply
a long time not expecting to encounter
28%
Forgot/Didn’t have it with me
the correct
ave never had an Asthma Action Plan because I don’t feel they are effective
10%
No reason
dosage?
yy Many respondents admit failing
to use controller medications
as prescribed. More than half of
ave never heard of an Asthma Action Plan
39%
Forgot/Didn’t have it with me
60%
Side effects/reactions
respondents
(57.9%)
admitted
to
not
taking
their
prescribed
controller
medication, with 32.8% missing
No reason
11%
Yes, I use it regularly
Cost/couldn’t afford it
Yes,
but
I have not used
it or updated itmore
in a long time
Side
effects/reactions
13% days
prescribed
dosages
than two
per
week,
and
16.4%
of
respondents
missing prescribed
Did not refill/prescription ran out
No, I have never had an Asthma
Action Planafford
because
Cost/couldn’t
it I don’t feel they are effective
21%
Didn’t
work/had
no effect
dosages
more
than
four
days
per
week.
Most
often,
patients
expressed
the
belief
that they were
No,refill/prescription
I have never heardran
of an
Did not
outAsthma Action Plan
18%
Health reasons/sick
Didn’t
work/had no effect and not in need
0% of11%
10% medication.
20%
30% Additionally
40%
50%others had given up on the medication
asymptomatic
their
No time/too busy
Health reasons/sick
10%
because of repeated asthma exacerbations
despite
use. Some cited unpleasant side-effects.
Only tookpast
as needed
No time/too busy
9%
main
OnlyWhat
took is
asthe
needed
reason you might
I wasstop
asleep/unconscious
or not take
the correct
Didn’t want
to be dependent
dosage?
I did not need/felt better
60%
Don’t know
t/Didn’t have it with me
ason
ffects/reactions
couldn’t afford it
t refill/prescription ran out
work/had no effect
reasons/sick
me/too busy
Yes
No
ook as needed
asleep/unconscious
want to be dependent
ot need/felt better
know
I was asleep/unconscious
20%
What is the main reason
you might
stop or not take the correct dosage?
3%
Forgot/Didn’t have it with me
9%
No reason
9%
Side effects/reactions
2%
11%
Cost/couldn’t afford it
13%
Did not refill/prescription ran out
Have you21%
ever skipped filling
a prescribed
Yes
Didn’t
work/had no effect
18%
asthma medication
because you were not
Health reasons/sick
No
11% able to afford it?
No time/too busy
0%
34%
10%
Only took as needed
9%
66%
I
was
asleep/unconscious
20%
Didn’t want to be dependent
3%
I did not need/felt better
9%
Don’t know
9%
2%
0%
Provincial/Territorial government drug plan
Full private coverageYes
from my employer
Have you ever skipped filling a prescribed
asthma medication because youPartial
were not
private coverage provided by my employer
No
able to afford it?
Private health insurance purchased by me
0%
19%
38%
56%
34%
I pay for my own asthma medications at the pharmacy as needed
Didn’t want to be dependent
I did not need/felt better
Don’t know
0%
19%
38%
56%
How is the cost of
your medication
15%covered? 30%
26%
27%
40%
9%
75%
20%
15%
30%
45%
60%
75%
75%
45%
60%
75%
yy Many patients are unsure about their therapy. Only 17.5% of respondents use Single Maintenance
and Reliever Therapy (also known as SMART), a combination inhaler that delivers both a maintenance
drug
66% and a quick relief drug. At the same time, 42.3% of respondents said they were unsure whether
they use SMART.Provincial/Territorial
This fact indicates
patients
either don’t know about the SMART option, or they are
government drug
plan
Full
from treatment.
my employer
How
is private
the costcoverage
ofof their
unfamiliar with the
details
your medication
Partial private
coverage provided by my employer
covered? as spacers (useful for those using pressurized metered-dose inhalers)
yy Medical devices,
such
Private
health insurance purchased by me
cial/Territorial government drug plan
26%
I pay for my own asthma medications at the pharmacy as needed
for some patients) are not used by many SA patients. A quarter
ivate coverage from my employer and peak flow meters (indicated
27%
0%
10%
20%
30%
40%
50%
private coverage provided by my employer
40%
of
respondents
did
not
know
anything
about asthma related medical devices such as a spacer or peak
e health insurance purchased by me
9%
or my own asthma medications at the
pharmacy
as needed
flow
meter,
and 42.5% of20%respondents were never
given or prescribed any equipment of any kind.
A great deal
Would you say your asthma affected your work or
Provincial/Territorial government drug plan school performance?
A great
deal from my employer
38%
Full private
coverage
Asthma Action
Planemployer
Partial private coverage
provided
by my
Somewhat
40%
Private health
Just insurance
a little purchased by me
20%
Breathe
I pay for my own asthma medications at the pharmacy as neededWhat would you do if?
Not Green
at all
0%
Zone
Your
asthma
0%
10%
20%
30%
40%
Don’t Know
2%
is as unique
(Sample)
Name:
Hospital/Emergency Room Phone Number:
Doctor’s Name:
Doctor’s Phone Number:
Date:
This Action Plan is a guide only. Always see a doctor if you are unsure what to do.
What is an Asthma Action Plan?
To remain symptom-free, I need to take these controller medications every day
– I have symptom-free asthma
An Asthma Action Plan is a series of
steps that you can use to manage your
I have no symptoms:
How much to take
When to take it
M e d i c a You
t i caught
o n a cold, and today
you are
asthma
it gets
I have no cough, wheeze,
chestwhen
tightness
or out of control.
feeling wheezy and you find it difficult
shortness of breath
to do your usual activities. Last night
WhyI use
an Asthma Action Plan?
I do not cough or wheeze when
exercise
you woke up because you were having
or sleep
Research has shown that having written
difficulty breathing and you found it
I can do all my usual activities
agreement with your doctor is very
hard to get back to sleep. You need to
I do not need to take days
off when
work managing asthma at
helpful
take your reliever (blue) inhaler more
home. The aim of an Asthma Action
Asthma varies over time and from person
and more. Do you know what to do?
Plan is to recognize the early warning
to person. What works for one person
signs of asthma and to take the
may not work for you. That is why your
Respiratory infections, a
appropriate
steps.
asthma care must be personalized.
I need to either increase my controller
or add on a different controller
Yellow Zone – I have asthma
symptoms
common medication,
asthma trigger,
It helps you:
often require a change to
control
I cough, wheeze, have chesttake
tightness
orof your asthma,
2 puffs, every
hours, as needed.This brochure provides an Asthma
Take
First
asthma treatment. You may
shortness of breath during the
day,when
whentoI increase or decrease
(Reliever)
Action Plan that will help you learn the
know
find
yourself making medication
exercise, or sleep
steps to self-manage your asthma so
your medications so that your
changes on your own and
I feel like I am getting a coldasthma
or the flu
is well-controlled, Second
day,
for the right
days, or until you are back in the
zone.
yougreen
can live
a life as symptom-free as
Increase
wonderingtoif you’ve
made
I need to use my reliever inhaler more than
(Controller)
possible.
decide when you should seek
decision. Talk to your doctor now
three times a week for my asthma
symptom
emergency
help.
about
the
specific
steps
you
should
If no improvement in
hours, call or visit your Doctor.
take when you are having asthma
How do I get a customized Asthma Action Plan?
symptoms.
Go directly to the nearest Emergency Room of your local hospital
Red Zone – I am in dangerTake
andthis
need
help Action Plan and
Asthma
What works for one person with
discuss it with your
Any of the following:
asthma
may
not work for you. It is
This is an emergency.
Dial
911.
doctor.
First
I have been in the Yellow Zone for 24 hours
very important to first gain a full
My asthma symptoms are getting worse
understanding of all your choices and
My reliever does not seem to be helping
then
obtain guidance
While waiting for
theto
ambulance,
take from your
Second
I can not do any type of activity
doctor on the appropriate steps to take.
I am having trouble walking or talking
every 10 minutes.
2 puffs of
I feel faint or dizzy
(Reliever
Forinhaler)
more information contact
I have blue lips or fingernails
The Asthma Society of Canada at
www.asthma.ca
I am frightened
or call 1-866-787-4050
This attack came on suddenly
as you are
t deal
what
A great deal
Would you say your asthma affected your work or
Do you feel living with
Has your asthma ever
school performance?
Somewhat
asthma interferes with
caused you to feel
38%
little
all
No
Sometimes
Quite Often
Know
imes
Often
1
2
2
3
4
5
6
Not at all
Don’t Know
50%
What is an Asthma Action Plan?
0%
10%
20%
30%
40%
50%
An Asthma Action Plan is aNoset of written instructions that
help patients manage,Sometimes
track and treat their asthma. These
Quite Often
plans
assist
patients
in
monitoring
and adjusting
medication
42%
0%
10%
20%
30%
40%
50%
10%
20%
30%
40%
50%
23% for worsening asthma and are informative in situations where
Do you feel living with asthma interferes with the quality of your social interactions with others?
patients are not
their ever
usual
treatment
facilities.or isolated?
Hasnear
your asthma
caused
you to feel stigmatized
Just astigmatized
little
the quality of your social
or isolated?
40% with others?
interactions
Not at all
20%
34% Know
35%
Don’t
0%
2%
Do you feel living with
Has your asthma ever
asthma interferes with
caused
you to feelhow
Approximately
the quality of your social stigmatized
or isolated?
many days
of work
interactions with others?
or school did you
34%
35%
miss in the past
42%
year? 42%
24%
23%
1
2%
Approximately how
many days of work
or school did you
miss in the past
year?
Somewhat
Just a little
9%
19%
6%
19%
6%
42%
24%
0%
No
1
2
3
4
5
6
7
8
Sometimes
Quite Often
0%
10%
20%
20
30%
40%
50%
Do you feel living with asthma interferes with the quality of your social interactions with others?
Has your asthma ever caused you to feel stigmatized or isolated?
No, I have never heard of an Asthma Action Plan
0%
10%
20%
0%
What is the main
reason you might
stop or not take
the correct
dosage?
Forgot/Didn’t have it with me
Forgot/Didn’t have it with me 60%
No reason
11%
No reason
Side effects/reactions
13%
Side effects/reactions
30%
10%
40%
20%
50%
30%
40%
50%
What is the main
reason you might
stop
or not take have it with me
Forgot/Didn’t
Forgot/Didn’t have it with me
the correct
No reason
No reason
dosage?
Side60%
effects/reactions
Side effects/reactions
Cost/couldn’t
afford it
11%
Cost/couldn’t afford it
Finding 4: Financial challenges create significant barriers to
better health
outcomes
13%
Did not
refill/prescription
ran
Didout
not refill/prescription ran out
Cost/couldn’t afford it
21%
Cost/couldn’t afford it
21%
Didn’t work/had
no effect Didn’t work/had no effect
Did not refill/prescription
ran
18% their asthma medication
While
most
respondents
use
every day,
many do not, and for different reasons.
Didout
not
refill/prescription
ran out
18% reasons/sick
Health
Health reasons/sick
Didn’t work/had no effect Didn’t work/had no effect
11%
11%
No time/too busy
No
patients cannot 10%
afford the cost of10%
their medication. Oftime/too
thosebusy
who indicated their annual
Health reasons/sick yy Many
Health reasons/sick
Only took as needed
Onlyreported
took as needed
household
income, more9%than a third of respondents
(36.9%)
it being under $50,000. This
No time/too busy
9%
I was asleep/unconsciousI was asleep/unconscious
20%
Only took as
needed
20% asthma.
appears
to affect
their ability to manage
their
Didn’t want to be dependent
No time/too busy
Only took as needed
I was asleep/unconscious I was asleep/unconscious
Didn’t want to be dependent
Didn’t want to be dependent
I did not need/felt better
Don’t know
Yes
No
I did not need/felt better
Don’t know
Didn’t want to be dependent
3%
I did not need/felt better I did not need/felt better
9%
Don’t know
9% Don’t know
3%
9%
9%
Have 2%
you ever skipped filling a prescribed asthma medication
0%
because you 2%
were not able
to afford15%
it? 0% 30%
Have you ever skipped filling
a prescribed
Have
you ever skipped fillingYes
a prescribed
asthma medication because
you were
not
asthma
medication
because you
No were not
able to afford it?
able to afford it?
0% 34%
34%
Yes
66%
No
66%
15%
45%
30%
60%
45%
75%
Yes
No
38%
0%
19%
56%
19%
75%
38%
56%
75%
yy Many insurance carriers do not provide complete coverage to asthma patients. Most
respondents (74.4%) have been denied
coverage
forHow
recommended
treatment options by insurance
How is the
cost of
is the cost of
your medication
your
medication
programs. Many of these people (29.5%)
are
currently
taking
alternative
treatments for their asthma.
covered?
covered?
Just
over
half
of
respondents
(53.7%)
have
a
“full
coverage”
drug
plan
and
40% say they only have
Provincial/Territorial government
drug
plan
26%
Provincial/Territorial government drug plan
26%
“partial
coverage.”
62.1% of respondents
plans sufficiently covered their
Full private coverage from
my employer
27% indicated their insurance
Full
private
coverage fromOnly
my employer
27%
Partial private coverage provided
by mycosts.
employer
40%
Partial private
coverage provided by my employer
40%
treatment
Private health insurance purchased
by me
9%
Private health
insurance purchased by me
I pay for my own asthma medications
theasthma
pharmacy
as neededat the pharmacy as needed
20%
I pay for myat
own
medications
9%
20%
How is the cost of your medication covered?
Provincial/Territorial government
drug plan
Provincial/Territorial
government drug plan
Full private coverage fromFull
my private
employer
coverage from my employer
Partial private coverage provided
by my coverage
employer provided by my employer
Partial private
Private health insurance purchased
by me
Private health
insurance purchased by me
I pay for my own asthma medications
theasthma
pharmacy
as needed
I pay for my at
own
medications
at the pharmacy as needed
0%
A great deal
Somewhat
Just a little
Not at all
Don’t Know
No
Sometimes
Quite Often
10%
20%0%
A great deal
Would you say your asthmaWould
affected
workasthma
or
youyour
say your
affected your work or
school performance?
school performance? Somewhat
38%
A great deal
Just a little38%
40%
Somewhat
40%
Just a little
Not at all
Don’t Know
20%
0%
2%
Not at all
20%
Don’t Know
0%
0%
2%
Do you feel living with
Has
yourfeel
asthma
Do you
livingever
with
Has your asthma ever
asthma interferes with
causedinterferes
you to feel
asthma
with
caused you to feel
the quality of your social stigmatized
isolated?
the quality oforyour
social stigmatized or isolated?
interactions with others? interactions with others?
34%
35%
No
34%
35%
42%
Sometimes42%
42%
42%
24%
23%
Quite Often
24%
23%
30%10% 40%20% 50%30%
50%
A great deal
Somewhat
Just a little
Not at all
Don’t Know
10%
20%0%
30%
10%
No
40%
20%
50%
30%
40%
50%
No
Sometimes
Sometimes
Quite Often
0%
Quite Often
10%
20% 0%30% 10%
40% 20%
50% 30%
40%
5
Do you feel living with Do
asthma
interferes
withasthma
the quality
of yourwith
social
wit
you feel
living with
interferes
the interactions
quality of your
Has your asthma everHas
caused
to feel
stigmatized
or isolated?
youryou
asthma
ever
caused you
to feel stigmatized or isolated
Approximately how
Approximately how
many days of work
many days of work
or school did you
or 1school did you
1
miss in the past
miss
in the past
The
high
affects treatment. One respondent said in an interview that, “I
2cost of asthma medication
year?
2
year?
3
have
prescription
coverage
that
will
cover
birth control, but it won’t cover my inhaler. Sometimes I
3
2%
1
2%
4
just
4
9%
2 want to give up.”
9%
5
5
19% 3
19% describes
Another
respondent
having to rely on sample medication to maintain the treatment
6
6
6% 4
6%
7 “My doctors help7me with the cost by giving me samples of most of my inhalers, but
schedule:
19% 5
19%
8
8 except for the Ventolin which is reasonably priced, I have to take on
when
I have
to pay6%for them,
6%
6
9
9 medication.”
extra
work
to help6%
pay for my
6%
7
10
10
2% 8
2%
0%
10%
20%
30%
40%
50%
0%
10%
20%
30%
40%
50%
0% 9
0%
31% 10
31%
The cost of asthma medication affects treatment
1
2
3
4
5
6
7
8
9
10
40%
21
Cost/couldn’t afford it
Didn’t want to be dependent
3%
13%
Did not refill/prescription
out
I did not need/feltran
better
9%
21%a prescribed Didn’t work/had
skipped filling
YesDon’t
no effect
know
9%
ation because
you were not
18%
HealthNo
reasons/sick 0%
2%
15%
ble to afford11%
it?
No time/too
0% busy 19%
38%
34%
10%
Only took as needed
66%
ibed
9%Yes
I was asleep/unconscious
e not
20% No
Didn’t want to be dependent
3%
0%
38% better
75%
34%
How56%
is the cost of
I 19%
did not need/felt
9%
66%
your medication
Don’t know
9%
covered?
2%
0%
15%
56%
30%
75%
45%
60%
75%
Finding 5: SA impairs a patient’s quality of life
overnment drug plan
30%
45%
60%
75%
26%
This research shows that SA impairs
a patient’s ability to live a full and healthy life.
How is the cost of
rom my employer
your medication
ibed
Yes
ge
provided by my
employer
yy SAcovered?
limits physical
e not
No
ce purchased by me
26%
27%
activity.40%
Despite the fact that a clear majority of respondents (89%)
9%
reason
for
avoiding physical activity, 71.4% experience limitations to
20%
56%
75%
agree that
asthma
was
not
a
their daily
ma
medications at the0%
pharmacy19%
as needed
27%38%
34%
activities and
oyer
40% exercise because of their asthma in the four weeks preceding the study.
66%
Provincial/Territorial government 9%
drug plan
harmacy asFull
needed
private coverage from my20%
employer
How is the
Partial private coverage provided
bycost
my of
employer
your
medication
orial government
drug plan
Private health
insurance purchased by me
covered?
my employer
noverage
asthmafrom
medications
at the pharmacy as needed
26%
e provided by my employer
0%
27%
nsurance purchased by me
oyer
40%
at the pharmacy as needed
yy SA leads to lost productivity. More than half of respondents (55.1%) indicated that asthma has
affected their work or school performance in the past year, and 40% of these people indicated it has
affected their work or school “a great deal.”
10%
20%
30%
40%
50%
Would you say your asthma affected your work or school performance?
9%
0%
10%
20%
uld
you say
asthma affected your work
harmacy
as your
needed
20%or
school performance?
orial government drug plan
A great deal38%
affected your work or
overage from my employer
40%
mance?
Somewhat
e provided by my employer
20%
38%
Just a little
nsurance purchased by me
0%
40%
Not at all 2%
at the pharmacy as needed
20%
0% Don’t10%
20%
Know
0%
30%
40%
A
great deal
50%
Somewhat
Just a little
Not at all
Don’t Know
0%
30%
40%
10%
20%
50%
30%
40%
50%
0%
10% barriers
20%
30%
50% More than half of respondents (64.6%) said they
2% yy Asthma creates
social
for
some40%
patients.
you feel living with
Has your asthma ever
have
felt
stigmatized
at some point because of their asthma, with 22.2% saying they feel stigmatized
A great
deal
affected
your with
work or caused
ma
interferes
you
to feel
No
mance?
uality
ofasthma
your social
or
isolated?
Somewhat
as
your
ever stigmatized
“quite
often.” Similarly, 66% of respondents
feel that their asthma interferes with the quality of their
Sometimes
ctions
with
others?
caused you to feel 38%
a little
No and 23% feel this way “quite often.”
socialJust
interactions
with others,
gmatized or isolated?
Quite Often
34%40%
35%
Sometimes
Not at all
42%20%
42%
0%
10%
20%
30%
40%
50%
Quite Often
35%
Don’t Know
24% 0%
23% Do you feel living with asthma interferes with the quality of your social
42%
0%
10%
20%
30%
40%
50%
interactions
with others?
feel living
asthma
interferes with the quality of your social interactions with
0%
10%
20% Do you
30%
40% with 50%
2%
23%
Has your asthma ever caused you to feel stigmatized or isolated?
Do you feel living with asthma interferes with the quality of your social interactions with others?
Has your asthma ever caused you to feel stigmatized or isolated?
how
as your asthma ever
work
caused
you to feel
ou
1
gmatized
or isolated?
st
2%
9%
19%
6%
19%
6%
6%
2%
0%
31%
2
3 35%
4 42%
5 23%
6
7
8
9
10
10%
0%
No
Sometimes
Quite Often
0%
10%
20%
30%
40%
50%
Do you feel living with asthma interferes with the quality of your social interactions with others?
affects
family
members,
Most
respondents
(80%) reported that they, or a
Has your
asthma
ever causedtoo.
you to
feel stigmatized
or isolated?
yy Asthma
family
member, experienced trouble sleeping in the last three months because of their asthma symptoms.
yy SA attacks tend to be lengthy and costly. Approximately 30% of our respondents missed work
or school because of their asthma. Of these, 65.9% missed five days or more. A third of those who
10%work or school
20%
30%
40%
50%
missed
(31.9%)
missed
20%
30%
40%
50% 10 days or more, amounting to approximately 10% of total
respondents.
Breathe Easy
10%
20%
30%
A GUIDE FOR BEING ACTIVE AND
HEALTHY WITH ASTHMA
40%
50%
The Asthma Society of Canada has recently
published a guide for maintaining a healthy,
active life with asthma. Copies are available at
asthma.ca
22
others?
0%
A great deal
Somewhat
Just a little
Not at all
Don’t Know
yy SA
10%
20%
30%
40%
50%
A great deal
Would you say your asthma affected your work or
school performance?
38%
Somewhat
Just a little
40%
20%
Not at all
Don’t Know
0%
2%
0%
Do you feel living with
Has your asthma ever
asthma interferes with
caused you to feel
the quality of your social stigmatized or isolated?
interactions with others?
is
an emergency condition for many
34%
35%
10%
20%
30%
40%
50%
No
Sometimes
patients. Almost half of respondents (48%) visited an
Quite Often
room because
of
their
asthma
in
the 12 months preceding the study. A third went more
42%
42%
0%
10%
20%
30%
40%
50%
five had been admitted to the hospital because of asthma in the
Quite Oftenthan once during this
24% period. One in 23%
Do youmore
feel living
with
asthma interferes with the quality of your social inte
preceding 12 months, with one in ten having been hospitalized
than
once.
No
emergency
Sometimes
1
2
3
4
5
6
7
8
9
10
Approximately how
many days of workApproximately
or school did you
1
miss in the past
2
year?
3
2%
4
9%
5
19%
6
6%
19%
6%
6%
2%
0%
Has your asthma ever caused you to feel stigmatized or isolated?
how many days of work or school did you miss in the past year?
7
8
9
10
0%
10%
20%
30%
40%
50%
31%
What Patients with Severe Asthma Want
Patients with SA showed a general willingness to take medications when associated with the
strong desire to live normal lives, participate in routine household activities and daily exercise
and attend the hospital for asthma-related issues less frequently. Nighttime symptoms and the
consequent loss of sleep were ranked more critical than daytime symptoms, but an overwhelming
number of respondents simply wanted to be able to go to work and be involved in the economic
life of Canada.
Activities that other Canadians take for granted continue to be the dream of people with SA.
They ranked the following as their main goals with respect to their disease:
yy To function normally while completing household activities, walking and enjoying life
(98% very important, 1% somewhat important)
yy To not have to visit the emergency department or be admitted to hospital
(89% very important, 9% somewhat important)
yy To sleep without nighttime symptoms (87% very important, 11% somewhat important)
yy To exercise without asthma symptoms (80% very important, 17% somewhat important)
yy To go to work (84% very important, 5% somewhat important)
yy To improve breathing test results (74% very important, 17% somewhat important)
yy To live without daytime symptoms (68% very important, 26% somewhat important)
yy To lower the overall amount of asthma medication taken
(69% very important, 17% somewhat important)
yy To escape from dependence on reliever medications (55% very important,
24% somewhat important)
23
One Patient’s Story: Margaret’s
Journey with Severe Asthma
Struggles with Healthcare
Severe Asthma, along with physical effects,
strains one’s emotional and mental wellbeing.
Through the years, Margaret’s experiences with
physicians have varied. Her symptoms have
sometimes been treated as isolated allergic
reactions. Other times, doctors have carefully
explained treatment and medication options and
referred her to Certified Asthma Educators.
“I had fear of this getting worse, that I’m doing
everything I’m supposed to and now have a sense
of betrayal from my own body,” says Margaret, a
55-year-old woman living in Toronto.
Margaret’s SA inhibits several aspects of her life,
such as the simple joy of spending time outdoors
and being around her husband, who is a smoker.
Along with being upset by many doctors’ lack of
attention to and awareness of SA, the expense
of her medications frustrates Margaret. Over the
years, she has been treated with Ventolin, Advair,
Beclovent, Qvar and Prednisone.
“When I was in my mid-30s was when it really
started getting worse,” Margaret says. SA even
affects her profession, as she suffered an asthma
attack on her first day at a new workplace.
“I was frustrated that the medication was so
expensive,” Margaret says. To save money,
she has tried to stretch her doses so that her
medication would last longer.
“I’m not out as much since my last hospitalization.
I’m a lot more timid about going out and getting
things, with the ‘what if’ in my head. Is it a good
day? Bad day?”
Educating Others about SA
An Ongoing Hardship
“I’ve tried to educate friends and family when
I can but it’s frustrating,” Margaret says with
regards to SA awareness.
Margaret was diagnosed with SA when she
turned 50.
In the same way SA complicates her professional
life, SA also complicates Margaret’s relationship
with her husband because of his smoking
habits. Smoke has a direct effect on Margaret’s
condition, and she feels the situation indicates her
husband’s lack of awareness regarding his impact
on her. Avoiding smoke leads to isolation.
The condition dates back to her childhood, when
her family treated her mostly with home remedies.
As she grew older, it became more apparent that
Margaret suffered from asthma. A new family
doctor treated her accordingly.
Margaret’s current adversity rests in her inability
to find a family doctor or respirologist in her
community. Retirement and relocation have
made it difficult to maintain regular doctor’s
appointments. Presently, Margaret consults with
physicians at a nearby walk-in clinic, who say her
asthma is controlled poorly.
ASTHMAlayoutposterFR+EN
4/9/08
1:46 PM
Margaret considers venturing outdoors a risk
because of air quality and pollen. In all aspects of
life, she makes an effort to educate others about
the hardships of SA.
“I felt really guilty one day,” Margaret confesses.
“Somebody came in and said, ‘I can’t believe it,
my niece just died from an asthma attack,’ and I
went, ‘Yes! You finally get it!’ ”
Page 2
Should loss of loved ones be the lesson people
need before they understand the dangers
associated with SA? Margaret doesn’t think so.
But in her experiences, it has taken extreme
lessons before people change.
Asthma Patient
BILL OF RIGHTS
As a patient with asthma, you have the right to:
1
Strive for complete control
of your asthma.*
Complete control of asthma means exactly
what it sounds like — a life free of symptoms
and limitations. You should be aiming for:
Zero symptoms
Zero nighttime awakenings
Zero time lost from school, work
and play
Zero exercise limitations
Zero emergency room visits
Zero time spent in hospital because
of asthma
Zero side effects from asthma
medications
2
Discuss your personal targets in asthma
management with your doctor or healthcare advisor.
3
Access accurate and up-to-date information/
advice about asthma and its management,
and participate in decisions about your care.
4
Access appropriate medications
as needed.
5
Access asthma and health-care
services in a timely manner, including
physician appointments and treatments
in hospitals anywhere in Canada.
6
Access regular asthma assessments
with scheduled follow-up visits without
waiting for an emergency.
7
Access spirometry/
lung-function testing
in the primary health-care setting.
8
Access referral to an allergist
for assessment and testing when required.
9
Access asthma education programs
anywhere in Canada.
10
Live and work in smoke-free environments
with no exposure to second-hand smoke.
*According to the guidelines of the Global Initiative for Asthma (GINA): www.ginasthma.org
AIM FOR ZERO
To learn more about asthma or the Asthma Society of Canada,
visit
www.asthma.ca
or call
1-866-787-4050
Patients, working together with healthcare
providers and governments have the capacity
to manage their asthma. Together we can aim
for zero symptoms.
24
A Call to Action: Recommendations
to Improve the Quality of Life for
People with Severe Asthma
For professional associations
yy Establish a definition of SA based on new international guidelines that patients can understand and
that physicians will use to make diagnoses
yy Promote physician adherence to the most recent asthma consensus guidelines, including objective
diagnostic testing in addition to clinical assessment of patient symptoms
yy Promote specialization in pulmonology, respirology, immunology and allergies among medical school
graduates to increase the number of specialists in Canada
yy Encourage healthcare professionals to gain certification as Certified Asthma/Respiratory Educators
yy Educate patients about diagnostics, treatments, triggers and management through support groups
and educational programming
yy Develop innovative tools such as effective electronic Asthma Action Plans
For doctors, healthcare professionals and medical researchers
yy Proactively enquire about patients’ symptoms, their ability to engage in day-to-day activities and
physical exercise, their understanding of asthma control, and recent exacerbations, absences from
work and other quality of life concerns that may indicate SA
yy Ensure patients with Severe Asthma receive objective measures of lung function testing including
Spirometry, Peak Expiratory Flow (PEF), Challenge Testing (methacholine and/or exercise challenges)
and Sputum Cell Counts as appropriate to assist with treatment recommendations and are referred to
a specialist when indicated
yy Develop, in partnership with the patient, a written, easy-to-understand personalized Asthma Action
Plan that provides guidance on self-managing medications, dealing with asthma triggers and surviving
asthma attacks and ensure proper inhaler technique is being employed
yy Inform patients about alternative medications, including new biologics and medical procedures such
as bronchial thermoplasty that may be suitable for some patients to help better control SA
yy Continue research into medication adherence including options for better medication delivery devices
that are easier to use and more effective
For patients
yy Know patient rights and responsibilities
yy Learn what it means to “control” asthma and how to recognize when asthma is “not controlled”
yy Learn to manage asthma triggers wherever possible and to insist upon asthma and allergy friendly
environments at work, at home and in public places
yy Follow an Asthma Action Plan and ensure compliance with prescribed medication, and if this fails to
establish asthma control, consult with physicians about other treatment options
yy Ensure appropriate inhaler technique knowing it can make a significant difference in medication
delivery and asthma control
yy Join a patient support group such as the National Asthma Patient Alliance to engage with other
Canadians with asthma
26
For governments
yy Encourage healthcare professionals (family physicians, respirologists, allergists, immunologists,
pharmacists, nurses and certified asthma/respiratory educators) to engage in cross-disciplinary
discussion about the diagnosis, treatment and care of people with SA
yy Increase secure, cross-sector access and transfer of medical records to ensure consistency of care for
patients throughout their healthcare system experience
yy Recognize the financial burden of SA on the patient for both medical and non-medical expenses
through reimbursement and equalization programs in the income tax system
yy Increase funding for research into SA, its causes, types, treatments and cure
For employers
yy Recognize the personal, social and financial burden of employees with SA through enhanced
employee benefit programs
yy Accommodate employees with SA regarding workplace environment, flexible working hours and
medical leave when required
yy Proactively promote an understanding of asthma in workplace to lessen stigma and improve the
overall health of employees
The Asthma Society of Canada’s
National Asthma Patient Alliance
is a grassroots patient group
whose aim is to increase patient
awareness about how to achieve
optimal asthma control. To join,
call 1-866-787-4050 or email
napainfo@asthma.ca.
27
Appendix: The Study Methodology
and Research Team
About the Study
The study examined patients in four urban centres located in three provinces (Alberta, Ontario and
Quebec) using a qualitative survey (n=24) involving a lengthy personal interview and a complementary
on-line quantitative survey (n=200) to validate the results of the in-depth interviews. Participants were
Canadian adults 18 years and older who live with controlled or uncontrolled SA, and who have been
diagnosed with asthma by a physician. The indicators used to determine the severity of asthma were
based on a variety of indices of asthma control such as those listed by GINA and reviewed by a team of
expert advisors.
28
About Participants
The research team recruited people diagnosed with SA to participate in in-person interviews. A small
number of interviews were accomplished over telephone.
Patient recruitment involved direct outreach to members of the National Asthma Patient Alliance (NAPA),
through the Severe Asthma Network as well as promotion through local asthma clinics and relevant
healthcare centres. Project staff distributed promotional posters through clinics and health centres in
target cities and emailed relevant contacts with the goal of reaching as many potential participants as
possible in the target cities. All interested participants were directed to the Eligibility Questionnaire that
was available in English and French.
All potential participants were evaluated through a strict screening process and only qualifying applicants
were contacted for the interview phase. All participants were given the option of anonymity or to
withdraw as part of the online screening structure and provided with an additional consent form.
Who they are
yy Seventy-five per cent of interviewed participants were between 30 and 60 years old. The largest group
was between 50 and 59 years old. The next largest group was between 30 and 39 years old. The
majority of interview participants (81%) were female.
yy A quarter of participants were diagnosed with asthma before the age of five and another quarter of
participants were diagnosed with asthma in their 30s. Nearly all participants were diagnosed with SA
as adults.
Where they live
yy The largest group of participants live in Ontario (42.2%), with the next largest groups living in Alberta
(20.6%), British Columbia (15.7%) and Quebec (8.9%). The remaining 12.6% live in other parts of
Canada. The study participants were largely from provinces in which the ASC has active relationships
with asthma clinics and the most research partners and clinicians for patient recruitment. They also are
the provinces in which most Canadians live.
What they earn
yy Of the people who participated in this research study, most (69.9%) had a college or higher education
background and many (42.7%) reported they had an annual household income of $50,000 or higher
(36.9% of respondents reported an annual household income of under $50,000, and 24.3% said they
had a household income of $90,000 or higher).
yy The respondents represented a diverse group, with nearly half (47.1%) employed on a full-time basis.
Almost a tenth of respondents (8.8%) said a disability prevented them from working. The remaining
participants identified themselves as employed part-time, retired, unemployed, a student or as a stayat-home parent.
The challenges they face with asthma
yy The majority of respondents to the study reported that they use asthma medications on a daily basis.
yy Most respondents (83.5%) use their controller medication daily, with 71.1% using it at least
twice per day.
yy Many respondents (42.2%) use their reliever medication daily, with 28.8% using it at least
twice per day.
yy In the four weeks preceding the study, more than half of respondents (52.9%) used their rescue
medication almost daily, with 22.2% requiring it several times per day.
29
The Project Team
The team that conducted the ASC study into SA include researchers, academics, clinicians and staff
of the Asthma Society of Canada.
yy Dr. Robert Oliphant
President and CEO, Asthma Society of Canada
yy Dr. Susan Waserman
Professor, Dept. of Medicine, Clinical Immunology and Allergy, McMaster University
Chairperson, Medical and Scientific Committee, Asthma Society of Canada
yy Darren Fisher
Director, Partnerships, Asthma Society of Canada
Project Management
yy Rupinder Chera
Researcher, Asthma Society of Canada
Project Investigative Lead
yy Noah Farber
Director, Communications and Government Relations and Executive Director,
National Asthma Patient Alliance (NAPA)
Recruitment, Dissemination of results
yy Zach Simbrow
Director, insightOut
Research Methodology Consultant
Expert Advisors
An advisory group representing the medical, clinical and academic perspectives provided expert advice
on the project implementation strategies and helped the investigators create definitions, establish the
project scope, address barriers and challenges, devise a methodology of data collection tools, ensure
appropriate ethics approvals and recruit participants.
yy Dr. Dilini Vethanayagam
Co-Investigator, Associate Professor, Department of Medicine (Respirology), University of Alberta,
Edmonton Regional Severe Asthma Center
yy Dr. Jason Lee
Education Director, St. Michael's Hospital Clinical Immunology and Allergy, St. Michael's Hospital,
Private Practice Lecturer, University of Toronto Department of Medicine
yy Dr. Céline Bergeron
Assistant Clinical professor, Department of Medicine, Université de Montréal, Pneumologist, Centre
hospitalier de l'Université de Montréal (CHUM)
yy Dr. Clare Ramsey
Attending Physician, Respiratory Medicine and Critical Care Medicine, Health Sciences Centre
Assistant Professor, Department of Medicine, University of Manitoba
30
Ethics Review
This study, its methodology, survey instruments, patient recruitment and consent materials and all
protocols regarding information storage and disclosure were reviewed and approved by Institutional
Review Board Services (IRB). IRB services attests that the protocol and consent documents were
approved and accord with good clinical practices, Health Canada regulations and the Tri-Council Policy
Statement for Ethical Conduct of Research involving humans.
Additionally, standards based on the Member Standards for the Market Research Intelligence
Association were also followed. General ethical standards and guidelines are approved by the Asthma
Society’s Medical and Scientific Committee for all research and programming and fall into the following
categories:
yy Consent: Research teams ensure that participants understand the purpose and key components
of the study and what the information they provide will be used for. Participants have the right to be
treated professionally and to withdraw from a study for any reason.
yy Professional conduct: The utmost care is taken to uphold high standards of general competency
in the design, execution, analysis, reporting, interpretation and consulting phases of any study. All
activities abide by the prevailing legislation that applies to the research conducted.
yy Participant rights: The research team protects the interests of participants’ rights to confidentiality.
The team ensures that records of research will be held for the appropriate periods and that these will
be protected from theft, misuse and inadvertent destruction. All personal and identifying information is
kept confidential and will only be used as identified and consented to.
31
End Notes
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
Government of Canada, Statistics Canada. (2010) Canadian
community health survey (CCHS)—annual component. Ottawa:
Statistics Canada.
19.
Government of Canada, Public Health Agency of Canada. (2007,
November 21). Life and Breath: Respiratory Disease in Canada.
20.
Theriault, L., et al. (2012). Cost risk analysis for chronic lung disease
in Canada. Ottawa: The Conference Board of Canada.
21.
Banh, H. L. (2011). Unconventional Treatment Options in Severe
Asthma: An Overview. Journal of Pharmacy & Pharmaceutical
Sciences, 14(3), 387–399.
22.
Kaplan, A.G., et al. (2009, November 10). Diagnosis of asthma in
adults. CMAJ: Canadian Medical Association Journal, 181(10),
E210-E220.
23.
Gaga, M., Zervas, E., & Chanez, P. (2009). Update on severe asthma:
what we know and what we need. European Respiratory Review,
18(112), 58–65.
24.
Government of Canada, Statistics Canada. (2010) Canadian
community health survey (CCHS)—annual component. Ottawa:
Statistics Canada.
25.
Government of Canada, Public Health Agency of Canada. (2007,
November 21). Life and Breath: Respiratory Disease in Canada.
26.
McIvor, R. (2007). Asthma control in Canada: No improvement since
we last looked in 1999. Canadian Family Physician Médecin De
Famille Canadien, 53(4), 672-677.
Chapman, K. R., Boulet, L. P., Rea, R. M., & Franssen, E.
(2008). Suboptimal asthma control: prevalence, detection and
consequences in general practice. European Respiratory Journal,
31(2), 320–325.
27.
FitzGerald, J. M. (2006). Asthma control in Canada remains
suboptimal: The reality of asthma control (TRAC) study. Canadian
Respiratory Journal : Journal of the Canadian Thoracic Society, 13(5),
253-259.
28.
Klomp, H., et al. (2008). Examining asthma quality of care using a
population-based approach. Canadian Medical Association Journal,
178(8), 1013-21.
Government of Canada, Public Health Agency of Canada. (2007,
November 21). Life and Breath: Respiratory Disease in Canada.
Retrieved from http://www.phac-aspc.gc.ca/publicat/2007/lbrdcvsmrc/index-eng.php.
Tait, H. (2008). In Statistics Canada, Statistics Canada and Canadian
Electronic Library (Firm) (Eds.), Aboriginal peoples survey, 2006: Inuit
health and social conditions. Ottawa, Ont.: Statistics Canada.
Rowe, B., et al. (2010). Admissions to Canadian hospitals for acute
asthma: A prospective, multicentre study. Canadian Respiratory
Journal, 17(1), 25-30.
Bousquet, J., et al. (2010). Uniform definition of asthma severity,
control, and exacerbations: document presented for the World
Health Organization Consultation on Severe Asthma. The Journal of
Allergy and Clinical Immunology, 126(5), 926–938.
CIHI. (2010). QuickStats, Emergency Department (ED) Visits for
asthma.
Rowe, B., et al. (2010). Admissions to Canadian hospitals for acute
asthma: A prospective, multicentre study. Canadian Respiratory
Journal, 17(1), 25-30.
32
Bousquet, J., et al. (2010). Uniform definition of asthma severity,
control, and exacerbations: document presented for the World
Health Organization Consultation on Severe Asthma. The Journal of
Allergy and Clinical Immunology, 126(5), 926–938.
Thériault, L., et al. (2012). Cost risk analysis for chronic lung disease
in Canada. Ottawa: The Conference Board of Canada.
Banh, H. L. (2011). Unconventional Treatment Options in Severe
Asthma: An Overview. Journal of Pharmacy & Pharmaceutical
Sciences, 14(3), 387–399.
Kaplan, A.G., et al. (2009, November 10). Diagnosis of asthma in
adults. CMAJ: Canadian Medical Association Journal, 181(10),
E210-E220.
To, T., et al. (December 2008). Can a community evidence-based
asthma care program improve clinical outcomes? A longitudinal
study. Medical Care, 46(12), 1257-1266.
Pakhale, S., Mulpuru, S., & Boyd, M. (2011). Optimal Management
of Severe/Refractory Asthma. Clinical Medicine Insights. Circulatory,
Respiratory and Pulmonary Medicine, 5, 37-47.
Gaga, M., Zervas, E., & Chanez, P. (2009). Update on severe asthma:
what we know and what we need. European Respiratory Review,
18(112), 58–65.
Fletcher, M., & Hiles, D. (2013). Continuing discrepancy between
patient perception of asthma control and real-world symptoms: a
quantitative online survey of 1,083 adults with asthma from the UK.
Primary Care Respiratory Journal: Journal of the General Practice
Airways Group, 22(4), 431–438.
Chung, K. F., et al. (2014). International ERS/ATS guidelines on
definition, evaluation and treatment of severe asthma. The European
Respiratory Journal, 43(4), 343-373.
Pakhale, S., Mulpuru, S., & Boyd, M. (2011). Optimal Management
of Severe/Refractory Asthma. Clinical Medicine Insights. Circulatory,
Respiratory and Pulmonary Medicine, 5, 37-47.
References
Acuña-Izcaray, A., et al. (2013). Quality
assessment of asthma clinical practice guidelines:
A systematic appraisal. CHEST Journal, 144(2),
390–397.
CIHI. (2001, October 26). Respiratory
Disease in Canada. Retrieved from https://
secure.cihi.ca/estore/productFamily.
htm?pf=PFC142&lang=fr&media=0.
Asthma and Allergy Foundation of America.
(2009). AAFA Patient Survey Report. Landover,
MD: Asthma and Allergy Foundation of America.
CIHI. (2010). QuickStats, Emergency Department
(ED) Visits for asthma.
Conference Board of Canada. (n.d.). The
Inconvenient Truths About Canadian Health Care.
Retrieved from www.conferenceboard.ca/cashc/
research/2012/inconvenient_truths.aspx.
Asthma Insight and Management. (2010). Asthma
insight and management in Europe and Canada
(EUCAN AIM): A multi-country survey of asthma
patients. Europe: AIM.
European Federation of Allergy and Airways
Diseases Patients Associations. (2005). Fighting
for Breath: A European patient perspective on
severe asthma. Belgium: EFA.
Asthma Society of Canada. (2005). Asthma action
study. Toronto: Asthma Society of Canada.
Asthma Society of Ireland. (2007). Severe Asthma
in Ireland and Europe: A Patient’s Perspective.
Dublin: Asthma Society of Ireland.
Firoozi, F., et al. (2007). Development and
validation of database indexes of asthma severity
and control. Thorax, 62(7), 581-587.
Asthma UK. (2010). Fighting for Breath: The
Hidden Lives of People Living with Severe
Asthma. London: Asthma UK.
Fletcher, M., & Hiles, D. (2013). Continuing
discrepancy between patient perception of
asthma control and real-world symptoms: a
quantitative online survey of 1,083 adults with
asthma from the UK. Primary Care Respiratory
Journal : Journal of the General Practice Airways
Group, 22(4), 431–438.
Asthma UK. (2004). Living on a knife edge: A
powerful and moving account of living with serious
symptoms of asthma. London: Asthma UK.
Banh, H. L. (2011). Unconventional Treatment
Options in Severe Asthma: An Overview. Journal
of Pharmacy & Pharmaceutical Sciences, 14(3),
387–399.
FitzGerald, J. M. (2006). Asthma control in Canada
remains suboptimal: The reality of asthma control
(TRAC) study. Canadian Respiratory Journal :
Journal of the Canadian Thoracic Society, 13(5),
253-259.
Bousquet, J., et al. (2010). Uniform definition
of asthma severity, control, and exacerbations:
document presented for the World Health
Organization Consultation on Severe Asthma. The
Journal of Allergy and Clinical Immunology, 126(5),
926–938.
Gaga, M., Zervas, E., & Chanez, P. (2009). Update
on severe asthma: what we know and what we
need. European Respiratory Review, 18(112),
58–65.
Chapman, K. R., Boulet, L. P., Rea, R. M., &
Franssen, E. (2008). Suboptimal asthma control:
prevalence, detection and consequences in
general practice. European Respiratory Journal,
31(2), 320–325.
GINA. (n.d.). Global Strategy for Asthma
Management and Prevention. Retrieved from
http://www.ginasthma.org/documents/4
GINA. (n.d.) Pocket Guide for Asthma
Management and Prevention. Retrieved April
13, 2014, from http://www.ginasthma.org/
documents/1/Pocket-Guide-for-AsthmaManagement-and-Prevention.
Chung, K. F., et al. (2014). International ERS/ATS
guidelines on definition, evaluation and treatment
of severe asthma. The European Respiratory
Journal, 43(4), 343-373.
Glaxo Wellcome. (2000). Asthma in Canada: A
Landmark Survey. Mississauga: Glaxo Wellcome.
34
Government of Canada. (2013, May 7). ICRH
Strategic Plan 2013-2016 - CIHR. Retrieved
April from http://www.cihr-irsc.gc.ca/e/47022.
html#fnb3.
The Lung Association. (2013). National Respiratory
Research Strategy: An Overview. Ottawa: The
Lung Association.
McIvor, R. (2007). Asthma control in Canada:
No improvement since we last looked in 1999.
Canadian Family Physician Médecin De Famille
Canadien, 53(4), 672-677.
Government of Canada, Public Health Agency of
Canada. (2007, November 21). Life and Breath:
Respiratory Disease in Canada. Retrieved from
http://www.phac-aspc.gc.ca/publicat/2007/lbrdcvsmrc/index-eng.php.
Pakhale, S., Mulpuru, S., & Boyd, M. (2011).
Optimal Management of Severe/Refractory
Asthma. Clinical Medicine Insights. Circulatory,
Respiratory and Pulmonary Medicine, 5, 37-47.
Government of Canada, Statistics Canada. (2010)
Canadian community health survey (CCHS)—
annual component. Ottawa: Statistics Canada.
Pedersen, S. (2010). From asthma severity to
control: a shift in clinical practice. Primary Care
Respiratory Journal : Journal of the General
Practice Airways Group, 19(1), 3–9.
Government of Canada, Statistics Canada. (2011,
February 4). Population, urban and rural, by
province and territory (Canada). Retrieved April
13, 2014, from http://www.statcan.gc.ca/tablestableaux/sum-som/l01/cst01/demo62a-eng.htm.
Rowe, B., et al. (2010). Admissions to Canadian
hospitals for acute asthma: A prospective,
multicentre study. Canadian Respiratory Journal,
17(1), 25-30.
Government of Canada, Statistics Canada. (2013,
June 17). Asthma, by age group and sex (Number
of persons). Retrieved from http://www.statcan.
gc.ca/tables-tableaux/sum-som/l01/cst01/
health49a-eng.htm.
Tait, H. (2008). In Statistics Canada., Statistics
Canada. and Canadian Electronic Library (Firm).
(Eds.), Aboriginal peoples survey, 2006: Inuit
health and social conditions. Ottawa, Ont.:
Statistics Canada.
Humbert, M., et al. (2007). Asthma control or
severity: That is the question. Allergy, 62(2), 95101.
Theriault, L., et al. (2012). Cost risk analysis for
chronic lung disease in Canada. Ottawa: The
Conference Board of Canada.
Kaplan, A.G., et al. (2009, November 10).
Diagnosis of asthma in adults. CMAJ: Canadian
Medical Association Journal, 181(10), E210-E220.
To, T., et al. (December 2008). Can a community
evidence-based asthma care program improve
clinical outcomes? A longitudinal study. Medical
Care, 46(12), 1257-1266.
Klomp, H., et al. (2008). Examining asthma quality
of care using a population-based approach.
Canadian Medical Association Journal, 178(8),
1013-21.
Lougheed, M. D., et al. (2012). Canadian Thoracic
Society 2012 guideline update: diagnosis and
management of asthma in preschoolers, children
and adults. Canadian Respiratory Journal : Journal
of the Canadian Thoracic Society, 19(2), 127–164.
Lougheed, M. D., et al. (2010). Canadian Thoracic
Society Asthma Management Continuum—2010
Consensus Summary for children six years of
age and over, and adults. In Canadian respiratory
journal : journal of the Canadian Thoracic Society
17(1), 15–24.
35
“When I found out I had asthma
I felt like I was drowning: I was
having difficulty breathing which
made me feel like I was struggling
under water. Everything was so
overwhelming that I didn’t know
where to turn or what to do.”
A Canadian Patient with Severe Asthma
The Asthma Society of Canada is a national health
charity committed to improving the quality of
life for people living with asthma and associated
allergies. The Asthma Society’s vision is to
empower every child and adult with asthma in
Canada to live an active and symptom free life.
The National Asthma Patient Alliance (NAPA) is a
group of asthma patients, parents and caregivers
who support and advocate for people with
asthma.
This study was made possible in part by Novartis
Pharmaceuticals Canada Inc., Roche Canada and
Boston Scientific Ltd. who provided educational
grants to the Asthma Society of Canada.
© Asthma Society of Canada 2014
Registered charity number: 89853 7048 RR0001
124 Merton Street, Suite 401, Toronto, Ontario,
Canada M4S 2Z2
asthma.ca
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