Respiratory Medicine (2009) 103, 1004e1012

ava i lab le a t www.sc iencedi rec t .com

journa l homepage : www.e lsev ie r . com/ loca te / rmed

Living with chronic obstructive pulmonary disease:A survey of patients’ knowledge and attitudes

Paul Hernandez a,*, Meyer Balter b,e, Jean Bourbeau c,f, Rick Hodder d,g

a Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canadab Department of Medicine, University of Toronto, Toronto, Ontario, Canadac Department of Medicine, McGill University, Montreal, Quebec, Canadad Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada

Received 20 August 2008; accepted 19 January 2009Available online 6 March 2009

KEYWORDSCOPD;Survey;Symptoms;Patient education

* Corresponding author. Room 4458fax: þ1 902 473 6202.

E-mail address: paul.hernandez@ce Current address: Mount Sinai Hospf Current address: Respiratory Epide

Quebec, H2X 2P4, Canada.g Current address: The Ottawa Hosp

0954-6111/$ - see front matter ª 200doi:10.1016/j.rmed.2009.01.018

Summary

Introduction: Chronic obstructive pulmonary disease (COPD) is a common respiratory conditionand the fourth leading cause of death in Canada. However, little is known about the impact ofCOPD on the lives and attitudes of individuals living with this condition. The purpose of thisstudy was to determine whether Canadians with COPD are properly educated and supported,and to recommend solutions to any care gaps identified.Methods: A total of 389 Canadians were surveyed who were 40 years of age and older, physi-cian diagnosed with COPD, and current or former smokers. The telephone survey contained 68items and took 35 min to complete. COPD severity was classified according to symptomseverity using the Medical Research Council (MRC) score.Results: Respondents tended to overestimate their disease severity and reported substantialsymptom burden and psychosocial impact of living with COPD. Most individuals claimed tobe well informed about COPD; however, their knowledge was poor in several domains includingthe causes of COPD, the consequences of inadequate therapy and the management of exacer-bations. Family physicians were the main health care providers. A minority of respondents hadseen a lung health educator. Only 34% had ever received a written action plan and only 33% hadbeen told how to prevent an exacerbation.

, Halifax Infirmary, 1796 Summer Street, Halifax, NS, B3H 3A7 Canada. Tel.: þ1 902 473 3698;

dha.nshealth.ca (P. Hernandez).ital, 6-207-600 University Avenue, Toronto, Ontario, M5G 1X5, Canada.miology and Clinical Research Unit, Montreal Chest Institute, 3650 St. Urbain, Office K1.32, Montreal,

ital, Civic Campus, 1053 Carling Ave, Ottawa, Ontario, K1Y 4E9, Canada.

9 Elsevier Ltd. All rights reserved.

COPD patient survey of knowledge and attitudes 1005

Conclusions: The symptom burden and psychosocial impact of living with COPD is substantial.There are significant gaps in patients’ knowledge about the management of COPD and littlecontact with lung health educators. Increased use of COPD-specific, self-management educa-tion programs may help rectify these care gaps.ª 2009 Elsevier Ltd. All rights reserved.

Introduction

Chronic obstructive pulmonary disease (COPD) is awell-characterized chronic lung disease that involves progressiveairflow limitation with symptoms of dyspnea, cough andsputum production. The most common cause is cigarettesmoking. COPD can impose significant morbidity on indi-viduals and was the fifth leading cause of death in Cana-dians in 19991 and the fourth leading cause of death in2003.2 In Canada, COPD is now more common in womenthan in men, with the rate of death from COPD amongwomen predicted to overtake that of men in the next fewyears.2

The 2005 Canadian Community Health Survey deter-mined that 4.4% of Canadians 35 years of age and older enearly 750,000 people e have COPD, based on self-report-ing of diagnoses made by health care professionals.1 Theannual direct cost of COPD was estimated in the 2003Confronting COPD Survey to be $1977.81/person.3 Fully52.5% of this cost is due to hospitalization for COPD exac-erbations.3 In addition, the indirect annual cost of COPDwas estimated to be $1198.18/person, bringing the totalcost per person per year in Canada to $3195.97. Thus, theannual economic burden imposed by COPD on society is inexcess of $2.4 billion.

The optimal means of diagnosing COPD and of mini-mizing its symptoms and exacerbations have been pub-lished and disseminated in a series of recent consensusguidelines.4e6 The guidelines have also been formattedfor easier access and use by family physicians, who arethe primary health care providers for COPD in Canada.7

Furthermore, there has been considerable effort byorganizations such as the Canadian Thoracic Society(CTS) to ensure that the guidelines are widely dissemi-nated and implemented.8 Less is known about theimpact of guidelines on narrowing the care gap forpatients with COPD; however, one recent physicianstudy in Ontario and Quebec has suggested that signifi-cant COPD care gaps remain.9 It has recently beendemonstrated that one cause of COPD care gaps is poorpatient knowledge or understanding of their symptoms,warning signs for an exacerbation and actions to betaken.10

Thus, a survey was undertaken from November 2006 toFebruary 2007 of a representative sample of Canadiansliving with COPD. The primary goal was to identify gaps inknowledge and attitudes about COPD and its managementamong individuals living with COPD. A secondary goal was toidentify unmet educational needs that could assist with theimprovement of educational programs developed by theCanadian Lung Association (CLA), the CTS, and other keystakeholder groups.

Methods

Study population

A total of 437 Canadians were contacted and invited tocomplete the survey. They were all 40 years of age andolder, reported having been diagnosed by a physician withCOPD, chronic bronchitis or emphysema and were currentor former smokers. No objective lung function data wasavailable. Three-hundred and eighty-nine individuals (89%response rate) completed the survey. This included 55 whowere identified by random digit dialling across Canada and334 who were selected from an Ipsos-Reid list of house-holds containing individuals who reported prior physiciandiagnosed COPD, chronic bronchitis or emphysema. Severalquestions relating to visits with respirologists and physio-therapists were addressed only to the individuals who wereidentified from the Ipsos-Reid list. The overall distributionof those surveyed was weighted to match the CanadianCOPD population by age, gender and region using StatisticsCanada data from the Canadian Community HealthSurvey.11,12

Survey questionnaire

The telephone survey contained 68 items and tookapproximately 35 min to complete. The questionnaire wasconceived and written by members of the CTS COPD andPulmonary Rehabilitation Committee, the CLA and Ipsos-Reid. The survey was conducted from November 20, 2006,to February 11, 2007 by employees of Ipsos-Reid on behalfof the CTS and CLA. Individuals experienced with pop-ulation-based surveys conducted the telephone interviewsfrom a script to minimize bias due to heterogeneity ofmultiple interviewers. Although this was the first time thequestionnaire was used in a research study, the question-naire was piloted to ensure that questions and responseswere unambiguous to respondents.

The first section of the survey ascertained whetherrespondents met entry criteria including having beendiagnosed with COPD, chronic bronchitis and/or emphy-sema, were over 40 years of age and had a history ofsmoking. The rest of the interview probed the surveyrespondents’ diagnosis and attitudes toward COPD. Many ofthe questions focused on the individuals’ knowledge leveland amount of education received from health careprofessionals. The information solicited included: therespondents’ understanding of the disease’s impact on theirdaily lives; their current pharmacotherapy and itsperceived effectiveness; the health care providers they hadseen in the last year and what routine management or

1006 P. Hernandez et al.

emergency care actions were undertaken in concert withthem; whether the individuals had learned anything moreabout COPD since their diagnosis and if so from whom; anddemographic details such as presence of co-morbidities,amount and frequency of smoking, education level, andemployment and income status.

Subjects were classified according to symptom severityusing the Medical Research Council (MRC) score based upontheir response to questions about breathlessness.6 An MRCscore of 1 was classified as ‘‘asymptomatic’’, MRC 2 as‘‘mild’’, MRC 3 or 4 as ‘‘moderate’’, and MRC 5 as‘‘severe’’. The following questions and responses wereused in the interviews. Question: Which of the followingbest describes how breathless you get? Possible responses:Too breathless to leave home; breathless walking a fewminutes, even when walking at my own pace; walk slowerthan people my own age; breathless hurrying on levelground; breathless only after strenuous exercise. Ques-tion: Do you feel breathless when? Possible responses:Sitting or lying still; talking; getting washed or dressed;doing light housework; walking up a flight of stairs; noneof these.

For the purpose of this survey a precise definition ofa COPD exacerbation was not provided to respondents;rather, respondents were asked questions about ‘‘flare-ups’’ of their lung disease; specifically, an exacerbationwas counted if subjects reported a flare-up of their lungdisease associated with an increase in symptoms of short-ness of breath, cough and/or phlegm lasting for two ormore days. Respondents were asked about the frequency inthe past year and consequences of flare-ups and whetherthey had been given any advice, including written actionplans, for dealing with these flare-ups.

0

20

40

60

Mild Moderate Severe

MRC Grade

Self-assessment

%

Figure 1 Subject perception of disease severity comparedwith symptom severity as determined by the Medical ResearchCouncil (MRC) dyspnea scale. For purposes of this comparison,MRC grade 1 (asymptomatic) and 2 are combined as mild, MRC3 and 4 are moderate, and MRC 5 is severe.

Survey accuracy and statistical analyses

With a sample of 389 individuals with COPD, the resultswere considered accurate to within �4.9 percentagepoints, 19 times out of 20, compared to the results ofa putative survey of the entire Canadian COPD population.The margin of error was larger for specific subgroups withinthe survey population e for example, the results froma 100-person subgroup would have a margin of error of �9.8percentage points, while those from a 50-person subgroupwould have a margin of error of �13.9 percentage points,19 times out of 20.

Chi-square test was used to test the hypothesis ofassociation between dyspnea severity with respondents’attitudes towards COPD medications and psychologicalimpact of living with COPD. Unadjusted logistic regressionwas used to analyze the association between medicationuse and symptom frequency across the Medical ResearchCouncil (MRC) dyspnea scale groups.13 Medication use (long-acting anticholinergic, LABA/ICS combination, LABA alone,ICS alone and SABA) and symptom frequency during anexacerbation (i.e. increased shortness of breath, increasedphlegm or sputum production and increased cough) wereeach modelled separately as the outcomes. A p value of<0.05 was considered statistically significant. Statisticalanalyses were performed using SAS software, version 9.1(SAS Institute Inc., Cary, NC).

Results

Respondents’ demographics

Among the individuals that completed the survey, 30% werefrom western Canada, 30% from Ontario, 20% from Quebec,and 20% from the Atlantic Provinces. Fifty-two percent ofrespondents were male and 52% were 65 years of age orolder. Forty-one percent reported some post-secondaryeducation as highest education level obtained. At the timeof the survey, only 19% were employed outside the home.Fifty-one percent were diagnosed with COPD greater than5 years before the survey was conducted. Twenty-ninepercent were current and 71% former smokers.

COPD severity and symptom impact

All respondents received a prior diagnosis from a physicianof COPD (78%), chronic bronchitis (55%) and/or emphysema(41%), with some reporting more than one of the threediagnoses. Subjects reported their perception of theirdisease severity by responding to the question: Overall,how severe is your condition now? Is it mild, moderate, orsevere? Disease severity reported by the respondents washigher when compared to their self-assessment withsymptom severity as determined using the MRC dyspneascale. (Fig. 1). For the purposes of analysis in Fig. 1, MRC 1(26%) and 2 (30%) were combined and called mild (56%).Patient perception of their disease being completely orwell-controlled decreased with symptom severity, droppingfrom 50% among those mildly symptomatic, 49% moderatelysymptomatic, and 25% of those severely symptomatic.

Shortness of breath or painful breathing, and limitationof physical activity by symptoms were cited by 55 and 43%of respondents, respectively, as being the ‘‘most troubling’’

87%

42%

28%

21%

19%

10%

8%

6%

3%

General practitioner/ family doctor

Respirologist or Lung Specialist*

Respiratory therapist

Lung Heath Educator

Nurse

Dietician

Physiotherapist*

Occupational therapist

Psychologist

Figure 2 Respondents’ contact with various health careprofessionals over the year preceding the survey. *334 of 389questioned about contact with these health care professionalgroups.

COPD patient survey of knowledge and attitudes 1007

aspect of having the disease. The most frequently reportedsymptoms to occur ‘‘every day’’ or ‘‘most days’’ includedcoughing (56%), shortness of breath (55%), bringing up ofphlegm or sputum (46%), and being awakened by theirsymptoms on all or most nights (11%).

Respondents with severe dyspnea were significantlymore likely than respondents with less severe dyspnea toreport a negative psychological impact of COPD on theirlives. (Table 1)

In terms of the impact of COPD on daily activities, 60 and89% of those with moderate and severe dyspnea, respec-tively, said that their COPD limited their sports and recre-ation ‘‘a lot,’’ compared with 29 and 37% of those who wereasymptomatic or had mild dyspnea, respectively. A similarresponse pattern by symptom severity was also seen for theimpact of COPD on normal physical exertion, housekeepingchores, social activities, family activities, sex life andsleeping. With respect to COPD impact on work, 31% ofrespondents were retired or unemployed at the time of thesurvey; of the remainder, 30% reported that COPD keptthem from working, highest amongst those with severedyspnea (68%). Furthermore, 40% of those who werecurrently working said the disease limited the types oramount of work they could do, and 14% said they had lostdays of work in the previous year because of COPD.

No significant differences appeared in a sub-analysis ofthe patients’ responses about the severity of their dyspneaby region of residence. Individuals in Quebec tended toview their condition as being slightly more severe than theircounterparts across the country, but they also tended toreport feeling more in control of their condition and havingmore confidence in their treating physicians.

Medical management of COPD

The survey confirmed that the vast majority of health carevisits for COPD were with general practitioners (Fig. 2).Respondents with more severe dyspnea were more likely tovisit health care professionals. There was an average of 5.7visits per year to a general practitioner or family physicianper respondent. With respect to other health resourceutilization related to COPD in the previous 12 months, 21%

Table 1 Psychological impact of living with COPD related to dy

‘‘Agree strongly/somewhat’’ Dyspnea se

Asymptom(n Z 105)

I often feel sad about having my condition 44I panic or get afraid when I can’t get my breath 44If you have it, you are always suffering 36I often feel guilty about having my condition 33I often worry about having a flare-up when I am

away from home23

My cough or breathing is embarrassing in public 17I have a hard time making plans because I never

know how I will be feeling17

n, number of respondents. The chi square test was used to investigatelevels of dyspnea severity combined) and responding agree strongly/soindicated by )p < 0.0001 or #p < 0.05.

reported having any hospitalizations; 25% had been to anemergency department; and 21% had an unscheduled visitto a clinic. A minority of respondents had more than one ofeach type of visit.

Most respondents reported having confidence in theirdoctors’ knowledge of COPD. For example, 88% agreed orstrongly agreed with the statement, ‘‘My doctor is veryknowledgeable about my condition and treatment,’’ while71% agreed or strongly agreed that, ‘‘My doctor teaches mehow to manage the ongoing symptoms of my condition.’’Far fewer reported negative comments about their physi-cians. For example, 30% agreed or strongly agreed with thestatement, ‘‘My doctor thinks my condition is my fault,’’and 20% agreed or strongly agreed that, ‘‘My doctor doesnot understand what it is like to suffer from my condition.’’

Spirometry was reportedly done in a large proportion ofrespondents; 80% reported having spirometry as part oftheir diagnostic work-up, and 67% reported having at least

spnea severity.

verity

atic(%)

Mild(n Z 121) (%)

Moderate(n Z 118) (%)

Severe(n Z 45) (%)

48 61 88)51 51 67)42 59 85#42 41 68)39 43 69)

43 40 70)30 49 75)

an association between dyspnea severity (severe versus all othermewhat for each question. Statistically significant differences are

64% 63%58%

16%

90%

51% 54%60%

0%

20%

40%

60%

80%

100%

Healthyeating

Regularexercise

Smokingcessation

Pulmonaryrehabilitation

RecommendedFollowed

Figure 3 Advice regarding non-pharmacological interven-tions given versus advice followed by respondents for COPDmanagement.

1008 P. Hernandez et al.

one spirometry test in the previous year. Thirty-twopercent of respondents with severe dyspnea had spirometrytesting several times in the past year, compared with 19% ofthose with moderate dyspnea, 11% of those with milddyspnea and 9% of those asymptomatic. Sixty-five percentof respondents reported having a chest radiograph in theprevious year; those with severe dyspnea reporting thehighest rate, at 77%. Other commonly performed testsreported in the previous year included electrocardiograms(50%), pulse oximetry (50%), arterial blood gases (31%) andcomputed tomography or magnetic resonance imagingscans (26%).

The survey also probed the frequency of pharmacolog-ical and non-pharmacological treatment interventions(Fig. 3). The most common non-pharmacological interven-tion was advice about healthy eating, followed by adviceabout exercise and smoking cessation. Pulmonary rehabili-tation was only recommended to 16% of respondents, but60% of those individuals actually attended a program.

The most popularly prescribed class of medications wasshort-acting beta agonists with 69% of respondents reportingtheir use. This was followed by anticholinergics (61%), thecombination of long-acting beta agonists and inhaled corti-costeroids (44%), and inhaled corticosteroids alone (19%).

*

0%

20%

40%

60%

80%

Long-actinganticholinergic

LABA/ICScombination

LABA

A

M

M

S

Figure 4 Relationship between reported inhaled drug therapy usCouncil (MRC) dyspnea scale. ) indicates significant difference in

The distribution of inhaled medication by dyspnea severity isshown in Fig. 4. There were statistically significant differ-ences related to dyspnea severity in pattern of use of short-acting beta-agonists and long-acting anticholinergics, butnot for other inhaled medications. Fully 83% of patients saidthey did not use non-prescription medications, while 6% saidthey used over-the-counter cough and/or cold syrups.

With respect to attitudes towards COPD medications,inhalers were reported as effective by 89% of respondents,and 68% said they always carry their inhaler with them(Table 2). There were concerns expressed about medica-tions, which are potential barriers to patient adherencewith taking them as prescribed, particularly amongrespondents with severe dyspnea. Seventeen percent saidthey had been prescribed home oxygen, while 30% were notcurrently using it. Improvement in symptoms was the mostcommonly offered reason for stopping home oxygen.

Coping with COPD flare-ups

Flare-ups or exacerbations are the most common reason forcontact between COPD sufferers and the health care system,and 81% of respondents reported experiencing at least oneflare-up in the previous 12 months. In general, frequency ofincreased symptoms (shortness of breath, cough and/orphlegm) associated with flare-ups were significantly relatedto MRC dyspnea severity (Fig. 5). Respondents had variedperceptions regarding the nature and causes of exacerba-tions. For example, 44% reported that their own actions/physiological factors could cause exacerbations of COPD,while 34% felt environmental factors were to blame. Otherpossible causes of flare-ups provided by respondentsincluded strenuous activity (26%), psychological factors(21%), stress (17%), allergies (17%), smoking (15%), colds(13%), ‘‘flus’’ (5%) and chest infections (4%). Sixteen percentsaid they did not know what caused flare-ups.

Respondents’ perceptions of the most effective ways toprevent flare-ups were similarly varied and reflected tosome extent the perceived causes. For example, 21% saidthey believed an effective preventive action is to take theirprescribed medication, 20% cited smoking cessation, 15%

*

alone ICS alone SABA

symtomptomatic (MRC 1)

ild (MRC 2)

oderate (MRC 3 & 4)

evere (MRC 5)

e and symptom severity as determined by the Medical Researchmedication use related to symptom severity (p < 0.05).

Table 2 Respondents’ attitudes towards COPD medications related to dyspnea severity.

‘‘Agree strongly/somewhat’’ Dyspnea severity

Asymptomatic(n Z 105) (%)

Mild(n Z 121) (%)

Moderate(n Z 118) (%)

Severe(n Z 45) (%)

Inhalers are effective in providingrelief from symptoms

92 92 83 88

I always carry an inhaler with me 57 73 68 81My current medication schedule makes

it difficult to lead an active life9 21 22 39#

I get embarrassed using mymedication in public

10 17 20 32)

My medication does not helpme very much

12 18 20 41)

I have unpleasant side effectsfrom my medication

14 11 20 30#

n, number of respondents. The chi square test was used to investigate an association between dyspnea severity (severe versus all otherlevels of dyspnea severity combined) and responding agree strongly/somewhat for each question. Statistically significant differences areindicated by )p < 0.0005 or #p < 0.05.

COPD patient survey of knowledge and attitudes 1009

said avoiding strenuous activity, and 10% said they believedthat avoiding stress was effective. Only 4% reported beingcareful to avoid infection as a useful prevention strategy.Seventeen percent said they do not know how to preventflare-ups.

Eighty-three percent of those surveyed said they knewhow to cope with flare-ups. However, 64% agreed orstrongly agreed with the statement, ‘‘I wish I had moreinformation on how to deal with my flare-up.’’ Moreover,many felt they knew how to prevent flare-ups and couldeasily control them, 35% agreed or strongly agreed with thestatements, ‘‘I constantly worry about getting a flare-up’’and ‘‘My doctor hasn’t been able to help me reduce [the]severity of my flare-ups.’’ Those with severe COPD reportedbeing significantly more likely to worry about flare-ups andtheir deleterious consequences than did those with milderdisease.

49% 52%

65% 67%73%

77%

0%

20%

40%

60%

80%

100%

Increased shortness ofbreath

Increased phprod

*

Figure 5 Increasing frequency of symptoms during flare-ups reCouncil (MRC) dyspnea scale. ) indicates significant difference in

Perceived consequences of a flare-up included 79% ofrespondents who reported that flare-ups can affect theirsurvival, 71% cited the need for a rescue medication, anunscheduled physician visit (62%), an emergency depart-ment visit (57%), admission to hospital (56%), death (46%),and the need for intubation (25%). Eighty percent ofrespondents reported taking medication when they hada flare-up. Forty-one percent visited their doctor, 26%spoke to their physician on the phone and 19% visited anemergency department. Forty-eight percent of respondentsdelayed contacting a physician for longer than 1 day afterthe onset of the flare-up. Thirty-two percent reported thatthe duration for ‘‘time to recovery’’ from the flare-up wasgreater than a week.

Despite the awareness among respondents of the seriousconsequences of flare-ups, they reported having receivedlittle education from their physicians about how to self-

53%

68%65%72%

76% 76%

legm or sputumuction

Increased cough

Asymtomptomatic (MRC 1)

Mild (MRC 2)

Moderate (MRC 3 & 4)

Severe (MRC 5)

**

lated to symptom severity according to the Medical Researchsymptom frequency related to symptom severity (p < 0.05).

78%

55%

34%

34%

34%

33%

32%

Written you a prescription for aninhaler to use when you experience

a flare-up

Provided you with a written actionplan or set of instructions of what to

do when you get a flare-up

Given you a free sample ofmedication to use when you

experience a flare-up

Described the warning signs of aflare-up

Told you what to do if youexperience a flare-up

Written you a prescription for pills touse when you experience a flare-up

Told you how to prevent a flare-up

Figure 6 Respondents’ reports of education provided byphysicians regarding self-management of exacerbations.

1010 P. Hernandez et al.

manage these acute events (Fig. 6) and only a third hada written action plan to follow during a flare-up.

COPD education and public awareness

Only half of respondents felt that COPD was accuratelydepicted by the media and 37% believed that the public waswell educated about the disease. Sixty-three percentagreed that educating the public would decrease thestigma associated with living with COPD.

The vast majority of respondents had a positive pictureof their knowledge about COPD. Eighty-nine percentstrongly agreed or agreed with the statement, ‘‘I feel I amvery well informed about how to manage my condition.’’Yet, 39% strongly agreed or agreed with the statement,‘‘People with this condition are powerless to control itsprogression’’, while 47% strongly agreed or agreed with thestatement, ‘‘I feel I am not in control of my breathingproblem.’’ Those with severe disease were significantlymore likely than others to strongly agree or agree withthese statements.

Overall, respondents were more informed about theirCOPD at the time of survey than they had been at the timeof their diagnosis. Sixty percent indicated that their COPDeducation came from health care professionals, but only 5%cited a lung health educator as the source. Forty-ninepercent cited reading materials and information in themedia including the Internet as important COPD-educationsources, while 23% cited health organizations such asclinics, hospitals and rehabilitation centres as informationsources they used. Another 6% said they relied on their ownexperience and 4% relied on their peers, family, friends andacquaintances. Those with severe dyspnea reported higherrates of information-gathering from clinics, hospitals andrehabilitation centres, and from their own experience.

Discussion

This study is the largest survey ever undertaken in Canadaof COPD patients’ perceptions and education regarding

their disease, its severity and treatment, and their rela-tionship with health care professionals. As such, this surveycomplements the recent study of primary care physicianCOPD management practices in Ontario and Quebec.9

This study revealed that the symptom burden andpsychosocial impact of living with COPD was substantial,particularly for those with more severe dyspnea. Theresults also indicated that most individuals with COPD feltwell informed about their condition. However, theirknowledge was poor about the causes of COPD, theconsequences of inadequate therapy and the managementof exacerbations. The survey results also confirmed that thevast majority of COPD patients’ contact with the healthcare system for this disease occurs in the form of visits withtheir general practitioners or family physicians.

There were a number of potential shortcomings of thisstudy design. The methodology relied on subject self-reportand recall during a telephone interview. There was noconfirmation of the physician diagnosis of COPD withobjective lung function testing, nor attempts to reviewphysician or hospital records. There may also have beena self-selection bias among respondents in spite of effortsto select a population representative of the Canadianpopulation living with COPD. COPD is a complex disease;severity is best characterized using multiple assessmenttools (e.g. symptom scores, lung function, exercisecapacity, nutritional status, etc.). However, in this study,MRC dyspnea score was used as a surrogate for diseaseseverity as it has been shown to correlate with importantclinical outcomes such as quality of life and survival andwas the most practical means to assess disease severity inthis population-based survey.14,15

It was a surprise that the majority of respondentsreported having had spirometry at the time of diagnosis.This conflicts with the general perception that pulmonaryfunction tests are underutilized in Canada, particularly inprimary care, to confirm the diagnosis of COPD.16 In therecent CAGE study, only 56% of primary care physiciansreported that their COPD patients had ever undergonespirometry testing.9 This discrepancy may be accounted forby a selection bias of respondents coming largely froma pre-existing list of households containing a COPD patient.

In keeping with our current understanding of COPD,symptoms were most troublesome to patients with severedyspnea as determined by MRC dyspnea scale. We alsoobserved that the cardinal COPD symptoms of shortness ofbreath, cough and phlegm had important negative impactson all activities of daily living, quality of life and psycho-logical well-being of respondents, especially for those livingwith severe dyspnea.

The majority of respondents reported regular use ofa number of medications for treatment of COPD, but thepattern of medication use was discordant with current CTSguidelines for COPD management.7 For example, long-acting anticholinergics, inhaled corticosteroids and combi-nation long-acting beta-2-agonist/inhaled corticosteroidmedications were over prescribed for patients reportingonly mild dyspnea. Similar observations were reported inthe CAGE study.9

Non-pharmacological therapies, such as pulmonaryrehabilitation and self-management education, have beenshown to reduce symptom burden, improve health-related

COPD patient survey of knowledge and attitudes 1011

quality of life, and reduce health resource utilization inCOPD.17e21 Non-pharmacological therapies were underu-tilized in the survey population with only 16% referred topulmonary rehabilitation and only 5% who reported seeinga lung health educator. The reasons for this care gap,whether due to poor physician and patient awareness orlack of availability, were not explored in this study;however, it is known that existing pulmonary rehabilitationprograms have a capacity to serve only about 1% of theestimated COPD population in Canada.22

There are major health care costs associated withproviding care for COPD in Canada23; respondents reportedfrequent scheduled and unscheduled visits to physicians,emergency department visits and admissions to hospital,particularly during exacerbations. Exacerbations are costlyto patients and the health care system, are the mostcommon reason for medical visit, contribute to acceler-ated decline in lung function and quality of life, andincreased mortality in COPD.6 The majority of respondentsreported at least one exacerbation in the year prior to thesurvey. Although at least half of COPD exacerbations arethought to have an infectious etiology,6 few respondentsrecognized this fact or understood the role of avoidinginfection as a preventative strategy. Written action planswere used by only a third of respondents to manageexacerbations. Clearly, better patient education regardingthe prevention and management of exacerbations isrequired.

Most respondents relied on their physicians for educa-tion about COPD. There was, however, a disturbingdiscordance between respondents’ perception and thereality of their level of knowledge of COPD. One possiblesolution is collaborative, self-management educationinvolving patient, family caregivers, primary care physi-cians, specialists and COPD educators/case managers. At itscore, self-management education involves formalizededucation programs aimed at helping the patient andfamily improve their knowledge and skills relating to COPD,increasing their self-confidence, and helping them to actdecisively and correctly at all stages of the disease,including during exacerbations.24,25 Self-managementeducation has been shown to significantly reduce the rateof emergency-room visits and hospitalization due to acuteCOPD exacerbations.17e21 However it is clear that tosupport widespread self-management education programsin Canada, the existing healthcare delivery system andhealth professionals’ education will have to bemodified.24,25

In the 2005 COPD Report Card produced by the CanadianLung Association, it was noted that public awareness andmedia coverage of COPD is low compared to many otherchronic diseases in Canada.16 Respondents of the currentsurvey made similar comments and noted the negativestigma attached to COPD. Individuals living with COPD areoften elderly, frail and socially isolated and need help toeffectively advocate for more social supports and healthcare services. Patient advocacy groups, such as the CLA,need to do more to raise the profile of COPD among thegeneral public, health care administrators and health policydecision makers. Hopefully, more effective advocacy willresult in improved access to health care services, such aspulmonary rehabilitation programs and self-management

education by lung health educators. Improved utilization ofeffective interventions will help relieve the substantialpsychological and physical symptom burden and narrow theknowledge gap seen in this survey of individuals living withCOPD.

Conflict of interest statement

Dr Paul Hernandez has participated on medical advisoryboards, conducted continuing health education activitiesand/or industry-sponsored clinical research trials for thefollowing companies: Abbott, Actelion, Altana, AstraZe-neca, Boehringer Ingelheim, Eli Lilly, GlaxoSmithKline,Janssen-Ortho, Merck Frosst, Novartis, Nycomed, Par-ingenix, Pfizer, Shering, and ZLB Behring. Dr Meyer Balterhas participated on medical advisory boards, conductedcontinuing health education activities and/or industry-sponsored clinical research trials for the following compa-nies: Abbott, AstraZeneca, Bayer, Boehringer-Ingelheim,GlaxoSmithKline, Merck Frosst, Nycomed, and Pfizer. DrJean Bourbeau has participated on medical advisoryboards, conducted continuing health education activitiesand/or industry-sponsored clinical research trials for thefollowing companies: Altana, AstraZeneca, BoehringerIngelheim, GlaxoSmithKline, Novartis, Paringenix, andPfizer. Dr Rick Hodder has participated on medical advisoryboards, conducted continuing health education activitiesand/or industry-sponsored clinical research trials for thefollowing companies: Altana, AstraZeneca, BoehringerIngelheim, Eli Lilly, GlaxoSmithKline, Merck Frosst, Novar-tis, Paringenix, and Pfizer.

Acknowledgements

The authors acknowledge the assistance of Mary-Pat Shaw,Andrea Reed, and Ipsos-Reid with the conduct of thesurvey, Kara Thompson for her assistance with statisticalanalysis, and Rosemary Frei for her assistance with writingthe manuscript. The study was conducted with the supportof an unrestricted grant from GlaxoSmithKline, Canada tothe Lung Association.

References

1. Respiratory Disease in Canada. http://www.phac-aspc.gc.ca/publicat/rdc-mrc01/pdf/rdc0901e.pdf (version correct atDecember 4, 2007).

2. Deaths by selected grouped causes, sex and geography e

Canada. http://www.statcan.ca/english/freepub/84F0209XIE/2003000/t001_en.pdf (version correct at December 4, 2007).

3. Chapman KR, Bourbeau J, Rance L. The burden of COPD inCanada: results from the Confronting COPD Survey. Respir Med2003;97(Suppl. C):S23e31.

4. Canadian Thoracic Society Workshop Group. Guidelines for theassessment and management of chronic obstructive pulmonarydisease. CMAJ 1992;147:420e8.

5. O’Donnell DE, Aaron S, Bourbeau J, et al. Canadian ThoracicSociety. Executive summary: Canadian Thoracic Societyrecommendations for management of chronic obstructivepulmonary diseasee2003. Can Respir J 2003;10(Suppl. A):11Ae33A.

1012 P. Hernandez et al.

6. O’Donnell DE, Aaron S, Bourbeau J, et al. Canadian ThoracicSociety recommendations for management of chronicobstructive pulmonary diseasee2007 update. Can Respir J2007;14(Suppl. B):5Be32B.

7. O’Donnell DE, Hernandez P, Kaplan A, et al. Canadian ThoracicSociety recommendations for management of chronicobstructive pulmonary diseasee2008 update e highlights forprimary care. Can Respir J 2008;15(Suppl. A):1A-8A.

8. Boulet L-P, Becker A, Bowie D, et alCanadian Thoracic Society.Implementing practice guidelines: a workshop on guidelinesdissemination and implementation with a focus on asthma andCOPD. Can Respir J 2006;13(Suppl. A):5Ae47A.

9. Bourbeau J, Sebalt RJ, Day A, et al. Practice patterns in themanagement of COPD in primary practice: The CAGE study.Can Respir J 2008;15:13e9.

10. Kessler R, Stahl E, Vogelmeier C, et al. Patient under-standing, detection, and experience of COPD exacerbations:an observational, interview-based study. Chest 2006;130:133e42.

11. Statistics Canada. Canadian Community Health Survey,December 21, 2005.

12. Statistics Canada. Canadian Community Health survey, June13, 2006.

13. Fletcher CM, Elmes PC, Fairbairn AS, Wood CH. The signifi-cance of respiratory symptoms and the diagnosis of chronicbronchitis in a working population. BMJ 1959;2:257e66.

14. Ferrer M, Alonso J, Morera J, et al. Chronic obstructivepulmonary disease and health-related quality of life. AnnIntern Med 1997;127:1072e9.

15. Nishimura K, Izumi T, Tsukino M, et al. Dyspnea is a betterpredictor of 5-year survival than airway obstruction in patientswith COPD. Chest 2002;121:1434e40.

16. Canadian Lung Association. Chronic obstructive pulmonarydisease. A national report card, 2005. http://www.lung.ca/_resources/2005.copd_reportcard.pdf.

17. Bourbeau J, Julien M, Maltais F, et al. Reduction of hospitalutilization in patients with chronic obstructive pulmonarydisease. Arch Intern Med 2003;163:585e91.

18. Gadoury M-A, Schwartzman K, Rouleau M, et al. Self-manage-ment reduces both short- and long-term hospitalisation inCOPD. Eur Respir J 2005;26:853e7.

19. Casas A, Troosters T, Garcia-Aymerich J, et al. Integrated careprevents hospitalisations for exacerbations in COPD patients.Eur Respir J 2006;28:123e30.

20. Effing T, Monninkhof EM, van der Valk PDLPM, et al. Self-management education for patients with chronic obstructivepulmonary disease (review). Cochrane Database Syst Rev 2007;4. CDOO2900.

21. Lacasse Y, Goldstein R, Lasserson TJ, Martin S. Pulmonaryrehabilitation for chronic obstructive pulmonary disease.Cochrane database of systematic reviews 2008, Issue 3. TheCochrane Collaboration. Published by John Wiley & Sons, Ltd.doi:10.1002/14651858. CD003793.

22. Brooks D, Sottana R, Bell B, et al. Characterization of pulmo-nary rehabilitation programs in Canada in 2005. Can Respir J2007;14:87e92.

23. The economic burden of illness in Canada, 1998. Ottawa:Health Canada, http://www.hc-sc.gc.ca/pphb-dgspsp/publicat/ebic-femc98/; 1998 (version current at May 28, 2004.

24. Bourbeau J, Nault D. Self-management strategies in chronicobstructive pulmonary disease. Clin Chest Med 2007;28:617e28.

25. Hodder R. Collaborative self-management education in asthmaand COPD. Can Pharm J 2007;140(Suppl. 3):S28e9.