David Baxter PhD
Late Founder
Asthma Patients Unnecessarily Compromising Quality Of Life, Putting Themselves At Risk
September 20, 2004
Lung Association
Widely-held misperceptions and resulting behaviours seriously impact patients' health, family, work and social lives
OTTAWA, ON -- A first of its kind report, The Psychology of Compromise: A Focus on Asthma, developed by leading Canadian asthma experts and issued today by The Lung Association, brings to light the complex behavioural reasons behind asthma patients' acceptance of constant symptoms and unnecessary compromises.
The report reveals that asthma patients are caught in a cycle of poor disease management, fear, and symptoms. These problems are caused by low expectations of disease control, a lack of understanding of the need to manage their condition on a daily basis as a chronic disease, and misperceptions about what it means to have controlled asthma. The resulting compromises - ranging from nighttime wakenings and time away from work or family, to recurring visits to the emergency room - should not be accepted as inevitable. More than 500 people die and 150,000 visit an emergency room due to asthma each year.
"The Psychology of Compromise report was developed to uncover the reasons why asthma patients, who have a chronic, but highly treatable disease, seem to accept a sub-standard quality of life, when we know they don't have to," said Louis P. Brisson, Vice President, Asthma, The Lung Association. "Too many people are missing out on life because they believe that because they have asthma, they are destined to tolerate symptoms for the rest of their lives. If we take it one step further, this complacency may be contributing to the high numbers of asthma-related emergency room visits, hospitalizations and deaths in this country."
Results of a recent national survey of asthma sufferers support the report findings, showing that almost all asthma sufferers (94%) believe their asthma is under control, yet despite this perception, many continue to experience symptoms that limit quality of life and can negatively impact family, work and social lives. Nearly half of respondents report trouble sleeping and one in five (19%) of respondents admit to avoiding social or sporting activities due to their asthma.
Even more troubling, more than half (51%) admit to having used their rescue inhaler in the last month, indicating asthma symptoms may not in fact be as well controlled as they assume.
"The assumption that missing out on life or even having to go the hospital is 'normal' if you have asthma is frustrating, because we know for many patients, it's simply not true," says Meyer Balter, MD, FRCPC, Associate Professor of Medicine, University of Toronto. "This report gives us some insight into why this behaviour is so rampant, and what we can do about it. Even a compromise that many asthmatics would consider to be normal, like sleep deprivation, can have a very serious impact on that person's ability to function in their work or family life."
The Psychology of Compromise
The Psychology of Compromise report describes the multiple factors that can lead to asthma patients making compromises in their daily lives, including:
September 20, 2004
Lung Association
Widely-held misperceptions and resulting behaviours seriously impact patients' health, family, work and social lives
OTTAWA, ON -- A first of its kind report, The Psychology of Compromise: A Focus on Asthma, developed by leading Canadian asthma experts and issued today by The Lung Association, brings to light the complex behavioural reasons behind asthma patients' acceptance of constant symptoms and unnecessary compromises.
The report reveals that asthma patients are caught in a cycle of poor disease management, fear, and symptoms. These problems are caused by low expectations of disease control, a lack of understanding of the need to manage their condition on a daily basis as a chronic disease, and misperceptions about what it means to have controlled asthma. The resulting compromises - ranging from nighttime wakenings and time away from work or family, to recurring visits to the emergency room - should not be accepted as inevitable. More than 500 people die and 150,000 visit an emergency room due to asthma each year.
"The Psychology of Compromise report was developed to uncover the reasons why asthma patients, who have a chronic, but highly treatable disease, seem to accept a sub-standard quality of life, when we know they don't have to," said Louis P. Brisson, Vice President, Asthma, The Lung Association. "Too many people are missing out on life because they believe that because they have asthma, they are destined to tolerate symptoms for the rest of their lives. If we take it one step further, this complacency may be contributing to the high numbers of asthma-related emergency room visits, hospitalizations and deaths in this country."
Results of a recent national survey of asthma sufferers support the report findings, showing that almost all asthma sufferers (94%) believe their asthma is under control, yet despite this perception, many continue to experience symptoms that limit quality of life and can negatively impact family, work and social lives. Nearly half of respondents report trouble sleeping and one in five (19%) of respondents admit to avoiding social or sporting activities due to their asthma.
Even more troubling, more than half (51%) admit to having used their rescue inhaler in the last month, indicating asthma symptoms may not in fact be as well controlled as they assume.
"The assumption that missing out on life or even having to go the hospital is 'normal' if you have asthma is frustrating, because we know for many patients, it's simply not true," says Meyer Balter, MD, FRCPC, Associate Professor of Medicine, University of Toronto. "This report gives us some insight into why this behaviour is so rampant, and what we can do about it. Even a compromise that many asthmatics would consider to be normal, like sleep deprivation, can have a very serious impact on that person's ability to function in their work or family life."
The Psychology of Compromise
The Psychology of Compromise report describes the multiple factors that can lead to asthma patients making compromises in their daily lives, including:
- · Disease misconceptions
· Anxiety about the disease or treatment
· False expectations
· The psychological fatigue of managing a chronic disease
· Poor patient/physician communication
· Lack of education or understanding of the disease and medications[/list:u]
"Compromises do not result from sheer negligence or ignorance, but rather a complex set of behaviours," says Dr. David Aboussafy, PhD, clinical psychologist at the University of British Columbia, Vice-President, BC Psychological Association and principal author of the Psychology of Compromise report. "One of the biggest factors of compromising behaviour is the generally low expectations held by patients regarding the level of control possible with their disease. Low expectations feed into a multitude of attitudes and behaviours that ultimately impact quality of life."
"Studies looking at a number of illnesses such as hypertension and diabetes, show that the rate for appropriate disease management goes down when the condition is chronic, requires ongoing, regular treatment, and has a wide range of symptoms," says Dr. Aboussafy. "This report will help us begin to understand how we can begin to break this pattern for asthma patients."
Eliminating Compromise
International guidelines suggest that people with asthma can control their disease to such a degree that it has little to no impact on their lives.
"We know that greater asthma control is possible if it is managed as a chronic disease, and the patient and physician work together to reduce or eliminate even breakthrough symptoms," says Dr. Manon Labrecque a respirologist at Hôpital Sacré-Cœur in Montreal and Associate Professor of Medicine, Université de Montréal. "Compromise in a patient's life should simply not be seen as acceptable - asthma patients should demand more and believe that they deserve more."
"Managing asthma on a daily - rather than on a crisis - basis will allow many patients to re-gain those important elements of their lives that they may have compromised on in the past," says Louis Brisson. "We encourage every asthma patient to speak with their doctor to develop a care plan that optimally manages their disease and enables patients to live full, active lives, free of asthma symptoms."
Asthma in Canada
Approximately three million Canadians are living with asthma, a chronic lung disease resulting in recurrent attacks of breathlessness, generally accompanied by wheezing, chest tightening and/or coughing. It is characterized by both inflammation of the airways of the lungs and constriction of the muscles surrounding the airways. According to the World Health Organization, asthma is now a serious public health problem with more than 300 million sufferers worldwide.
About the survey
A nationwide telephone survey of Canadian adults who have been diagnosed with asthma or who have a family member who suffers from the disease, was conducted by POLLARA on behalf of The Lung Association. A total of 1,014 telephone interviews were conducted across the country. The data were collected between August 6, 2004 and August 11, 2004. The margin of error for results based on the total sample of 1,014 is ±3.1 percentage points, nineteen times out of twenty.
SOURCE: NATIONAL PharmaCom
