12
Outcome measurement for COPD: Reliability and validity of the Dyspnea Management Questionnaire Anna Norweg a, * ,c , Alan M. Jette a , Pengsheng Ni a , Jonathan Whiteson b , Minjin Kim b a Boston University School of Public Health’s Health & Disability Research Institute, Boston, MA, USA b Rusk Institute of Rehabilitation Medicine, New York University School of Medicine, New York, NY, USA Received 18 October 2009; accepted 5 September 2010 Available online 29 September 2010 KEYWORDS Dyspnea; Anxiety; Chronic obstructive pulmonary disease; Outcomes research; Item response theory; Cognitive-behavioral therapy Summary Background: The Dyspnea Management Questionnaire (DMQ) is a measure of the psychosocial and behavioral responses to dyspnea for adults with COPD. The research objectives were to evaluate the reliability and validity of an expanded DMQ item pool, as a preliminary step for developing a computer adaptive test. Methods: The original 66 items of the DMQ were used for the analyses. The sample included 63 women and 44 men with COPD (n Z 107) recruited from two urban medical centers. We used confirmatory factor analysis to test the factor structure of the DMQ and its underlying cogni- tive-behavioral theoretical base. The internal consistency and testeretest reliability, and breadth of coverage of the expanded DMQ item bank were also evaluated. Results: Five distinct dyspnea domains were confirmed using 56 original items of the DMQ: dys- pnea intensity, dyspnea anxiety, activity avoidance, activity self-efficacy, and strategy satis- faction. Overall, the breadth of items was excellent with a good match between sample scores and item difficulty. The DMQ-56 showed good internal consistency reliability (a Z 0.85eto 0.96) and good preliminary testeretest reliability over a 3-week interval (ICC Z 0.69e0.92). Conclusions: The DMQ demonstrated acceptable levels of reliability and validity for measuring multidimensional dyspnea outcomes after medical, psychological, and behavioral interven- tions for adults with COPD. ª 2010 Elsevier Ltd. All rights reserved. * Corresponding author. Health & Disability Research Institute, Boston University School of Public Health, 715 Albany StreeteT5W, Boston, MA 02118, USA. Tel.: þ1 617 638 1991. E-mail address: [email protected] (A. Norweg). c The DMQ is available upon request from the first author. available at www.sciencedirect.com journal homepage: www.elsevier.com/locate/rmed Respiratory Medicine (2011) 105, 442e453 0954-6111/$ - see front matter ª 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.rmed.2010.09.002

Outcome measurement for COPD: Reliability and validity of the Dyspnea Management Questionnaire

Embed Size (px)

Citation preview

Respiratory Medicine (2011) 105, 442e453

ava i lab le at www.sc iencedi rect .com

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

Outcome measurement for COPD: Reliability andvalidity of the Dyspnea Management Questionnaire

Anna Norweg a,*,c, Alan M. Jette a, Pengsheng Ni a, Jonathan Whiteson b,Minjin Kim b

aBoston University School of Public Health’s Health & Disability Research Institute, Boston, MA, USAbRusk Institute of Rehabilitation Medicine, New York University School of Medicine, New York, NY, USA

Received 18 October 2009; accepted 5 September 2010Available online 29 September 2010

KEYWORDSDyspnea;Anxiety;Chronic obstructivepulmonary disease;Outcomes research;Item response theory;Cognitive-behavioraltherapy

* Corresponding author. Health & DisMA 02118, USA. Tel.: þ1 617 638 1991

E-mail address: [email protected] The DMQ is available upon request

0954-6111/$ - see front matter ª 201doi:10.1016/j.rmed.2010.09.002

Summary

Background: The Dyspnea Management Questionnaire (DMQ) is a measure of the psychosocialand behavioral responses to dyspnea for adults with COPD. The research objectives were toevaluate the reliability and validity of an expanded DMQ item pool, as a preliminary step fordeveloping a computer adaptive test.Methods: The original 66 items of the DMQ were used for the analyses. The sample included 63women and 44 men with COPD (n Z 107) recruited from two urban medical centers. We usedconfirmatory factor analysis to test the factor structure of the DMQ and its underlying cogni-tive-behavioral theoretical base. The internal consistency and testeretest reliability, andbreadth of coverage of the expanded DMQ item bank were also evaluated.Results: Five distinct dyspnea domains were confirmed using 56 original items of the DMQ: dys-pnea intensity, dyspnea anxiety, activity avoidance, activity self-efficacy, and strategy satis-faction. Overall, the breadth of items was excellent with a good match between samplescores and item difficulty. The DMQ-56 showed good internal consistency reliability(a Z 0.85eto 0.96) and good preliminary testeretest reliability over a 3-week interval(ICC Z 0.69e0.92).Conclusions: The DMQ demonstrated acceptable levels of reliability and validity for measuringmultidimensional dyspnea outcomes after medical, psychological, and behavioral interven-tions for adults with COPD.ª 2010 Elsevier Ltd. All rights reserved.

ability Research Institute, Boston University School of Public Health, 715 Albany StreeteT5W, Boston,.(A. Norweg).from the first author.

0 Elsevier Ltd. All rights reserved.

Outcome measurement for COPD 443

Introduction

Dyspnea is the perception and experience of labored,uncomfortable breathing, and may produce secondaryphysiological, emotional, cognitive, and behavioralresponses.1 It is the primary symptom of COPD.1e6 Suchresponses to dyspnea significantly impact the functionalstatus and health-related quality of life of adults withCOPD.7e11 For example, adults with COPD experience lossof social life and social withdrawal and isolation, decreasedparticipation in leisure activities, and decreased physicalfunctioning related to their dyspnea.8,12 Because dyspnea ismultifaceted and significantly impacts the functional statusand health-related quality of life of adults with pulmonarydisease, a biopsychosocial approach to dyspnea assessmentand treatment is essential.1,10,13e15

Several therapeutic interventions are available thatfocus on decreasing the disabling psychological andbehavioral responses to dyspnea. These interventions

Table 1 Demographic Background of Adults with COPD(N Z 107).

Variable

Mean Age (y) [SD] 75.1 [8.6]Missing (%) 6.5

Female (%) 58.9Time Since DiagnosisMade (y) [SD]

4.4 [3.8]

Race (%) Caucasian 73.8AfricanAmerican

12.1

Asian 2.8Hispanic 1.9Other 0.9Missing 8.4

Marital Status (%) Married 42.1Other 53.3Missing 4.6

Oxygen Use at Home (%) Yes 38.3Missing 4.7

Table 2 Overall Fit Indices for the Five-Factor Model (N Z 107

No Model No.Items

Chi-square (DF) Ratio P

1 5-Factor 66 133.37 (41) 3.25 0.2 5-Factor 64 112.75 (47) 2.40 0.3 5-Factor 62 96.78 (46) 2.10 0.4 5-factor 56 78.15 (45) 1.74 0.

5 5-factor 56 57.67 (36) 1.60 0.

Notes: CFI Z comparative fit index, TLI Z TuckereLewis index, RMSa based on modification indices.

include: relaxation and breathing retraining, desensitiza-tion, monitored activity training, cognitive-behavioraltreatment, and education in self-management strategies.1

The individual and long term impact and benefits of theseinterventions in improving dyspnea in adults with COPD arehowever largely unknown and have not been wellestablished.1

Limitations of existing COPD-Specific dyspneainstruments

Existing dyspnea scales are very limited in their scope andcomprehensiveness. Most measure either dyspnea intensitywith physical activities or dyspnea self-efficacyperceptions.16e20 Current COPD instruments do notcomprehensively capture the psychological, social andbehavioral impact of dyspnea. For example, the Universityof Cincinnati Dyspnea Questionnaire (UCDQ)17 uses a one-factor model to measure dyspnea severity with physical andspeech activities. The Pulmonary Functional Status andDyspnea Questionnaire Modified (PFSDQ-M)16 measuresdyspnea intensity with activities and activity levels associ-ated with dyspnea but no other dimensions of dyspnea,using a limited range of activities. Therefore, the fullimpact of dyspnea on social and community participationand psychological functioning is not captured by the PFSDQ-M. Also, the COPD Self-Efficacy Scale (CSES),19 which wasdeveloped to measure individuals’ level of confidence inmanaging dyspnea in different situations, was found toresult in high rates of missing data associated with concernsabout its content validity.21

The University of California, San Diego Shortness ofBreath Questionnaire (UCSD SOBQ),17 a unidimensionalscale, measures dyspnea severity with activities of dailyliving (21 items); emotional distress of dyspnea (1 item);dyspnea cognition (1 item); and participation limitation dueto dyspnea (1 item). Single items of the SOBQ are inade-quate from a psychometric perspective to adequatelymeasure the dyspnea dimensions, emotional anxiety,cognition, and participation limitation.

The Breathing Problems Questionnaire (BPQ) for patientswith chronic bronchitis consists of 2 subscales: functional

).

CFI TLI RMSEA Removed Itemsa

0000 0.820 0.873 0.146 e

0000 0.895 0.935 0.115 IIA2,IIA60000 0.922 0.952 0.103 IIA2,IIA6,V9,V110016 0.953 0.973 0.084 IIA2,IIA6,V9,V11,

V6,V8,V7,IV2,V4, 3A3

0124 0.969 0.978 0.076 Same as model 4,but fixed thecorrelation in F1and F5, F5 andF3 at 0

EA Z root mean square error of approximation.

Table 3 Factor loadings and standard errors for five-factor model (N Z 107).

Items Estimation* SE

F1: Dyspnea IntensityDI1. Getting dressed 0.850 0.036DI2. Showering or bathing 0.862 0.036DI3. Reaching above your head 0.842 0.041DI4. Bending down 0.786 0.046DI5. Walking indoors for 40 feet 0.891 0.031DI6. Walking outdoors for 2 blocks 0.835 0.043DI7. Walking uphill for 1 block 0.758 0.044DI8. Carrying a 5e7 pound shopping bag 40 feet 0.814 0.042DI9. Climbing one flight of stairs 0.824 0.038DI10. Talking with other people for half an hour while seated 0.661 0.064DI11. Engaging in active leisure pursuits 0.810 0.046DI12. Participating in social activities in your community 0.884 0.039

F2: Dyspnea AnxietyDA1A. Nervous during breathing difficulty 0.763 0.048DA2A. Worried in general about your shortness of breath 0.800 0.042DA3A. Afraid when it was hard for you to breathe 0.766 0.046DA4A. Panicked when you couldn’t breathe well 0.776 0.048DA5A. Upset when you had to stop and rest due to shortness of breath 0.745 0.047DA6A. Tense if you thought about prior episodes of shortness of breath 0.774 0.05DA7A. You had little control over your shortness of breath 0.679 0.059DAB1. Intense breathing discomfort 0.776 0.049DAB2. Your shortness of breath being life-threatening 0.822 0.047DAB3. Panicking during a future breathing attack 0.913 0.035DAB4. Chest tightness 0.792 0.054DAB5. Delay in your breathing returning to normal after activity 0.707 0.057DAB6. Increased breathing effort with exercise 0.625 0.063DAB7. Not surviving an episode of shortness of breath 0.828 0.048DAB8. Loss of breathing control during routine daily activities 0.825 0.044DAB9. Something terrible happening to you when short of breath 0.826 0.045

F3: Activity AvoidanceAA1A. Hold back from doing activities that you enjoy 0.883 0.031AA2A. Stay at home more often than you wanted to 0.887 0.031AA3A. Stay sitting for long periods of time 0.748 0.046AA4A. Keep to yourself or avoid seeing other people 0.681 0.057AA5A. Be less active than you would have liked to be 0.814 0.04AAB1. Bending down 0.779 0.049AAB2. Walking 0.863 0.035AAB3. Physically exercising 0.840 0.036AAB4. Climbing stairs 0.797 0.045AAB5. Doing housework 0.863 0.036AAB6. Shopping 0.864 0.036AAB7. Participating in family activities 0.880 0.035AAB8. Pursuing active leisure interests 0.847 0.039AAB9. Social activities in your community 0.856 0.038AAB10. Engaging in sexual activities 0.655 0.064

F4: Activity Self-Efficacy 0.914 0.082SE1. Do light physical activity 0.870 0.102SE2. Walk outdoors 0.437 0.109SE3. Experience extreme cold or hot weather conditions 0.749 0.074SE4. Experience stressful situations 0.629 0.098SE5. Smell strong odors 0.754 0.079SE6. Travel far from home 0.914 0.082

F5: Strategy SatisfactionSS1. Use controlled breathing when feeling stressed 0.942 0.047

444 A. Norweg et al.

Table 3 (continued )

Items Estimation* SE

SS2. Use controlled breathing with daily activities 0.842 0.045SS3. Use controlled breathing with exercise 0.732 0.061SS4. Use relaxation techniques 0.854 0.048SS5. Take medications correctly as prescribed 0.642 0.073SS6. Keep good eating habits 0.437 0.106SS7. Assert your needs 0.555 0.082

*All factor loadings: p < 0.05.

Outcome measurement for COPD 445

problems and negative evaluations.22 However, all 6 itemsof the negative evaluations subscale cross-load with theproblems subscale indicating that the BPQ-33 most likelyconsists of only one factor. The items related to negativeevaluations are not specific to anxiety but also relate toother emotions. The content range of the BPQ short-form isalso limited.23 The BPQ requires further psychometrictesting, especially of its construct validity in addition to itsinternal consistency and testeretest reliability.

The three subscales of the St. George’s RespiratoryQuestionnaire (SGRQ)24 (symptoms, activity, and impacts)do not separate out dyspnea, but instead measure severalCOPD symptoms combined. Similarly, only the coping skillssubscale of the Seattle Obstructive Lung Disease Ques-tionnaire25 (SOLQ) specifically measures dyspnea; itcombines a question about dyspnea self-efficacy with threequestions about dyspnea anxiety. The other 3 subscales ofthe SOLQ (physical function, emotional function, andsatisfaction with care) measure the impact of lung prob-lems in general.

The Chronic Respiratory Disease Questionnaire(CRQ)20,26 consisting of 20 items measures emotional,physical, and behavioral responses to several COPD symp-toms and not dyspnea specifically, reducing its sensitivity tomeasuring change in dyspnea. It has two versions, aninterview-administered version and a self-reported version.The individualized, non-standardized activities of the CRQdyspnea subscale (of both versions) render it inappropriatefor comparisons between groups of patients with COPD and,therefore, randomized clinical trials.27 The CRQ dyspneasubscale has also been shown to have low internal consis-tency reliability.28 The interview-administered version ofthe CRQ has high respondent burden, as it can take 30 minto initially administer via interview. While the self-reportedversion takes less time, approximately 10 min, to initiallycomplete, the individualized activities of the dyspnea

Table 4 Factor correlations.

F1

F1: Dyspnea Intensity e

F2: Dyspnea Anxiety 0.688**F3: Activity Avoidance 0.802**F4: ActivitySelf-Efficacy

0.180**

F5: StrategySatisfaction

0a

**p < 0.05.a Fixed Parameter.

subscale need to be transcribed for repeat administrations,which increases its administration burden.

Dyspnea measures such as the baseline dyspnea index(BDI),29 transition dyspnea index (TDI),29 and the BritishMedical Research Council (MRC)29 are categorical scalesthat are further limited in their scope and precision ofmeasurement.30 The MRC measures magnitude of tasks thatprovoke dyspnea while the BDI and TDI measure functionalimpairment, magnitude of effort, and magnitude of taskassociated with dyspnea. The MRC was not designed tomeasure dyspnea change over time.

In summary, we developed themultidimensional DyspneaManagement Questionnaire (DMQ) to overcome the defi-ciencies of existing instruments used in clinical and researchsettings for measuring treatment outcomes for patients withCOPD.31 The DMQ addresses a need for a comprehensivedyspnea measure, that captures the physical, emotional(anxiety), behavioral, and cognitive aspects of dyspnea, inorder to enhance our understanding of patients’ dyspneaexperience and the effectiveness of treatments.

Previous research supported the reliability and validityof the DMQ in a sample of 85 participants (73 with physi-cian-confirmed COPD and 12 with physician-confirmedasthma).29 The DMQ items were developed using qualitativeinterview data with patients with COPD, a comprehensiveliterature review, and individual semi-structured interviewswith a sample of 4 adults with COPD who had participatedin a pulmonary rehabilitation program and 8 interdisci-plinary clinicians specializing in pulmonary medicine andrehabilitation to test the relevance and content validity ofthe items and subscales. Sixty-six items were rated bythe12 experts to be relevant and to have content validity.The DMQ was reduced to 30 items, which were found tohave high internal consistency (a Z 0.87e0.96) andtesteretest reliability over 2.5 weeks (ICC Z 0.71e0.95).The results provided strong evidence for the concurrent

F2 F3 F4

e

0.788** e

0.232** 0.252** e

0.247** 0a 0.497**

-5

-4.5

-4

-3.5

-3

-2.5

-2

-1.5

-1

-0.5

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

5

5 Subjects or

Categories

Person

0 5 10 15 20- 2 0 - 15 - 10 - 5 0

Item Categories

Figure 1 Item Person Map (Dyspnea Intensity).

446 A. Norweg et al.

validity of the dyspnea intensity, dyspnea anxiety, andactivity avoidance subscales of the DMQ-30, while moretesting was indicated for the activity self-efficacy andstrategy satisfaction scales. The DMQ discriminatedbetween COPD adults with different severities of lungdisease. The DMQ’s factor structure and range of difficultylevels were not examined in previous work. Also, theprevious research aimed to limit the number of DMQ itemssince the DMQ was initially designed to be administeredusing a fixed-format. In contrast, the current research wasundertaken to begin to evaluate the psychometric proper-ties of an expanded pool of items for the DMQ in prepara-tion for constructing a computer adaptive test (CAT)version of the instrument, including its factor structure,internal consistency reliability, testeretest reliability, andbreadth using Item Response Theory (IRT) measurementtechniques.32

Methods

Samples

Data on 107 subjects with pulmonary disease were derivedfrom two sources: 73 adults with physician-confirmedpulmonary disease from our initial work31 supplemented byan additional 34 adults with physician-confirmed COPDreferred for pulmonary rehabilitation at the Rusk Instituteof Rehabilitation Medicine.

The Dyspnea Management Questionnaire

The DMQ consists of five conceptually-derived dyspneadimensions: dyspnea intensity, dyspnea anxiety, activityavoidance, activity self-efficacy, and satisfaction withstrategy use. Cognitive-behavioral theory underlies the DMQincluding: the model of dyspnea,7 the cognitive-behavioralmodel of panic,33 cognitive-perceptual model of somaticinterpretation,34 fear-avoidance model,35 social learningtheory of self-efficacy,36 in addition to the theory of patientsatisfaction.37 The activity self-efficacy scale of the DMQ isbased on the COPD self-efficacy scale.19 The DMQ usesa 7-point Likert response scale that ranges from 0 to 6 withhigher scores representing better dyspnea-related function.For example, the activity avoidance scale of the DMQ rangesfrom (6) “never” to (0) “all the time”. To calculate eachsubscale score, raw values for items are summed and thendivided by the number of items in the subscale to obtaina mean score. The DMQ was developed to be both a clinicaland a research outcome scale to measure the effectivenessof multi-disciplinary treatments that aim to reduce theemotionally distressing and disabling responses to dyspneaand promote adaptive coping for adults with COPD.

Testing procedures

Institutional review board approvals were obtained prior tocommencing DMQ psychometric testing. Building on our

Figure 2 Item Person Map (Dyspnea Anxiety).

Outcome measurement for COPD 447

previous sample,31 we recruited an additional sample of 34adults using mail survey procedures.38 Patients with a diag-nosis of COPD and referred for pulmonary rehabilitationservices at the pulmonary outpatient clinic in 2005 and 2006were mailed a recruitment letter. People who consented viapostcard were mailed the DMQ-66 and an informed consentform to complete and return. Respondents completed theDMQ-66 twicewithin a threeweek interval, in addition to twoquestions about their health stability.

Analysis

We first used a series of confirmatory factor analyses toanalyze how well the data fit the theoretically derived factorstructure hypothesized for the DMQ.39 This factor analysismethod, based on the polychoric correlationmatrix, was usedbecause our datawerenot normally distributed. Since there isno universally accepted fit index, we usedmultiple goodness-of-fit indices including chi-square to degrees of freedomratio,40 Comparative Fit index (CFI),41 TuckereLewis Index(TLI)41 and Root Mean Square Error of Approximation (RMSEA)to check the model fit.42 For the chi-square to degrees offreedom ratio, an index of less than 3 is generally accept-able.42 CFI and TLI compare the model to a baseline nullmodel; possible values range from 0 to 1; 0.95 or highersuggests an acceptable fit.41 RMSEA assessesmisfit per degree

of freedom; values less than 0.08 suggest an acceptable fit,and values less than 0.05 suggest a very good fit.42

The remaining 56 items were used for all subsequentanalyses. Rasch item response theory (IRT) analyses wereused to estimate item difficulty parameters and comparethem to person ability estimates for each subscale.43,44

Greater breadth of measurement and precision are ach-ieved when item locations of a construct are spread acrossa respective continuum.45,46

To check the scale’s internal consistency, we calculatedCronbach’s alphas for each of the subscales. Testeretestreliability of the DMQ was assessed using intraclass corre-lation coefficients. For inclusion in testeretest reliabilityanalyses, respondents needed to deny both hospitalizationand a noticeable change in their health in the last month.

Results

Sample characteristics

The sample consisted of 107 adults with COPD from twomedical centers in New York City. A majority of adults werefemale (58.9%), married (42.1%), and Caucasian (73.8%); seeTable 1. The mean age of participants was 75.1 years(SDZ 8.6); 38.3% required supplemental oxygenuse at home.

-5

-4.5

-4

-3.5

-3

-2.5

-2

-1.5

-1

-0.5

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

5

5 Subjects or

Categories

Person

0 5 10 15 20- 2 0 - 15 - 10 - 5 0

Item Categories

Figure 3 Item Person Map (Activity Avoidance).

448 A. Norweg et al.

Construct validity: dyspnea domains

Confirmatory factor analysis supported the five-factorconceptually-derived model for the DMQ: Dyspnea Inten-sity, Dyspnea Anxiety, Activity Avoidance, Activity Self-efficacy, and Strategy Satisfaction (see Tables 2 and 3). Thefirst factor, dyspnea intensity, consisting of 12 items, is theamount of dyspnea experienced with performing self-care,mobility, home management, community, leisure, andsocial activities. Dyspnea anxiety, consisting of 16 items, isthe magnitude of anxiety symptoms associated with short-ness of breath. Activity avoidance, comprised of 15 items,is the extent to which anxiety symptoms, related to dysp-nea, contribute to avoidance of daily activities. Activityself-efficacy, with 6 items, is an individual’s perceivedconfidence in being able to manage shortness of breathwith activity participation. Strategy satisfaction,comprised of 7 items, is the individual’s evaluation of his orher mastery of dyspnea management strategies.

Analyses of modification indices resulted in 10 of the 66items being removed from the model. Two items, confidentthat you could relieve your shortness of breath, calm even ifyour breathing took effort, were deleted due to poor item fit.In a 5-factor CFA, removing these two items from the 2ndfactor improved the model fit (CFI Z 0.895, TLI Z 0.935,RMSEA Z 0.115). Eight additional items were removed fromthe3rd,4th,and5th factors basedonthemodification indices,further improving themodel fit (Chi-square (DF)Z 78.15 (45),CFIZ 0.953, TLIZ 0.973, RMSEAZ 0.084). These items were

respectively: avoid smoking, exercise regularly, lean forwardto recover fromexercise or activity, protect lungs, use devicesthat help you save energy, do moderate physical activity, useefficient movements, and keep strong emotions inside.Correlations between 3rd factor and 5th factor, 1st factor and5th factor were not significant. Therefore, we fixed thesethree correlations at 0, which further improved the model fit(Chi-square (DF) Z 57.67(35), CFI Z 0.969, TLI Z 0.978,RMSEAZ 0.076). Three of the DMQ factors, Dyspnea Intensity,Dyspnea Anxiety, and Activity Avoidance, weremoderately tohighly correlated (rZ 0.69 to 0.80); see Table 4.

Item calibrations

The breadths of the five DMQ subscales are shown as itemperson histograms in Figs. 1e5. They show the hierarchicaldistributions of estimated item difficulty and person abilitywith zero indicating the standardized mean or midpoint ofdifficulty of each subscale. Floor and ceiling effects wereminimal. Floor effects ranged from 0 to 1% (n Z 1) andceiling effects were 0e2% (n Z 2) for the five subscales.

Reliability

The Cronbach’s alphas for each of the DMQ subscalesranged from 0.85 to 0.96 (see Table 5). We estimated thetesteretest reliability of the DMQ over a mean interval of 3weeks (21.5 days, SD Z 10.97) using intraclass correlation

Figure 4 Item Person Map (Activity Self-Efficacy).

Outcome measurement for COPD 449

coefficients (ICC). ICCs ranged between 0.69 and 0.92 forthe five subscales (see Table 6).

The response rate was 51% for re-administration of theDMQ. Some respondents (n Z 12) were not asked tocomplete the DMQ twice because they did not consent toreceive a follow-up survey; had fallen; died; completed thequestionnaire with assistance (n Z 1); or skipped sectionsof the questionnaire the first time. A sample of 35 adultswith stable COPD was used. The sample was 65.7% female,42.9% married, 94.3% Caucasian, and had a mean age of75.7 years (SD Z 7.26). Testeretest participants differedsignificantly on use of supplemental oxygen, requiring lessoxygen at home, compared to participants who did notrespond twice (p Z 0.02); all other demographics did notdiffer significantly between the two groups.

Discussion

We confirmed the five-factor structure of the DMQ with 56items. The strengths of the DMQ are its comprehensive,multi-factor model structure of dyspnea and wide range ofitem difficulty levels. The dyspnea domains of anxiety,activity avoidance, and strategy satisfaction are notmeasured by any other dimensional dyspnea instrument foradults with COPD. The multifactorial model of the DMQfacilitates the study of dyspnea to determine whichdimensions specifically improve after clinical interventions.

The DMQ can help to, (1) improve dyspnea measurement inclinical and research settings for adults with COPD, (2)increase our understanding of how to improve dyspneasymptom management, and (3) facilitate the appropriateselection of patients for different dyspnea interventions.The DMQ is intended to be used as both a clinical andresearch outcome tool, to compare individual and groupdyspnea scores, for adults with COPD in order to evaluatethe effectiveness of clinical interventions, includingadjunctive pulmonary rehabilitation therapies whosebenefits are largely unknown.47,48

The appropriate selection of a dyspnea assessment tomeasure treatment effectiveness should be based ona match between the dyspnea domains measured by theassessment and the dimensions of dyspnea to be targeted bythe treatment. If treatment specifically targets psycholog-ical and behavioral dimensions of dyspnea, then the DMQ isa good choice to evaluate the effectiveness of the medical,cognitive-behavioral, or rehabilitative treatment compo-nent. For example, if therapy is designed to (1) increasea person’s dyspnea tolerance, (2) limit the distress anddisabling effects of dyspnea, and or (3) facilitate a healthy,active lifestyle and coping strategies, then the DMQwould bea good outcome instrument to use.

Although there were moderate to high correlationsbetween three of the DMQ factors, extensive model fittingwas completed and the best model fit was achieved witha solution that revealed five distinct and interpretable

-5

-4.5

-4

-3.5

-3

-2.5

-2

-1.5

-1

-0.5

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

5

5 Categories

Person

5 Subjects

0 5 10 15 20 25- 2 0 - 15 - 10 - 5 0

Item Categories

Figure 5 Item Person Map (Strategy Satisfaction).

450 A. Norweg et al.

domains. All confirmatory factor analysis fit indices metacceptable standards using 56 items of the DMQ.

In developing the current version of the DMQ, 10 itemswere removed (from the initial pool of 66 DMQ items)following factor analyses. Most of these items came fromfactor five, strategy satisfaction. The specific coping strat-egies of using efficient movements and forward leaningpostures, assistive devices, avoiding environmental lungirritants and smoking, and exercising regularly wereremoved. Less diversity in coping strategies is measured bythe strategy satisfaction scale as a result. The item, “domoderate physical activity” did not fit the activity self-effi-cacy scale. Thismay indicate that the examples given for thisitem, carrying grocery bags or climbing 1 flight of stairs, needto be measured separately for improved construct validity.

The DMQ-56 improves on the breadth of measurementcompared to the DMQ-30. For example, many more physical

Table 5 Internal Consistency Reliability of the Five-Factor Mod

Scale Cronbach’s Alpha Numb

Dyspnea Intensity 0.95 12Dyspnea Anxiety 0.95 16Activity Avoidance 0.96 15Activity Self-Efficacy 0.86 6Strategy Satisfaction 0.85 7

and social activities are included in the dyspnea intensityand activity avoidance scales, including “getting dressed”,“reaching above your head”, “bending down”, “talkingwith other people”, and “sexual activities”. The larger itempool for the dyspnea anxiety scale includes more itemsrepresenting hypervigilance and catastrophic interpreta-tion responses to dyspnea, including thoughts about lack ofcontrol and death and dying. The activity self-efficacy scaleincludes more items about managing dyspnea in differentenvironmental contexts.

IRT techniques provided support for the breadth ofmeasurement across different ranges of ability levels foreach factor of the DMQ. Overall, IRT analyses showedexcellent breadth of the DMQ for the five subscales anda good match of item difficulty compared to sampledistributions. There was a very good match for the dyspneaintensity subscale between items and abilities. For dyspnea

el.

er of items Mean Variance N

3.53 0.71 1034.20 0.31 993.76 0.20 912.91 0.09 923.76 0.31 92

Table 6 TesteRetest Reliability of the DMQ over a 3.1week interval (N Z 35).

Dimension ICC N p Values

Dyspnea Intensity 0.91 33 <0.001Dyspnea Anxiety 0.88 31 <0.001Activity Avoidance 0.92 31 <0.001Activity Self-Efficacy 0.83 32 <0.001Strategy Satisfaction 0.69 32 <0.001

ICC: Intraclass Correlation Coefficient.

Outcome measurement for COPD 451

anxiety, while the match was good, item locations wereskewed toward the lower end of the logit scale compared tosubjects’ abilities. For the activity avoidance subscale,item difficulty matched person ability except for a fewpeople functioning at the highest (most difficult) level ofthe continuum. For the activity self-efficacy and strategysatisfaction subscales, items matched sample distributionswell except at the very lowest functional proficiency of thescales. Further testing is needed with diverse samples ofpatients with COPD to confirm that the IRT item calibrationscan be generalized to the larger population of adults withCOPD.

The results also provided support for the internal consis-tency and testeretest reliability over a 3-week interval ofthe DMQ. The results of the testeretest reliability analysesare preliminary given the response rate for retesting andsince results cannot be generalized to patients who requirehigher levels of supplemental oxygen. Further testeretestreliability testing is needed to confirm the results in a moreheterogeneous sample with respect to ethnicity andsupplemental oxygen use. A 3-week interval may also havebeen too long for testeretest reliability since 17 individuals(31.5%) reported a change in health in this time period.

The newly expanded 56 items of the DMQ also providethe foundation for developing a computer adaptive test(CAT)49 version of this instrument. In preparation for usingcomputer adaptive testing, we were interested to evaluatethe reliability and validity of a larger DMQ item pool. CATapplications require a large set of items in any one outcomedomain, items that consistently scale along a dimension oflow to high proficiency. CAT and item response theory(IRT)50,51 techniques are currently being applied to thedevelopment of a new generation of function and disabilityassessment instruments51,52 and we believe may be ideallysuited for dyspnea assessment.

We believe our sample for field testing the DMQ itemswas a reasonably representative sample of adults withCOPD for which the DMQ was intended. Our patient samplehad a verified diagnosis of COPD and was obtained from twomedical centers. The DMQ is intended for both clinical andresearch use with adults with COPD. It can be employed tocompare individual patient’s and groups of patients’ dysp-nea scores before and after clinical interventions such aspulmonary medicine, pulmonary rehabilitation, cognitive-behavioral therapy, controlled breathing training, exercisetherapy, psychological support, desensitization, relaxationtherapy, and interdisciplinary self-management educationin order to ascertain their effectiveness.

A limitation of this study was the small sample size.MacCallum et al.,53e55 however, provided evidence that

a stable, valid factor solutionwith close approximation to themajor common factors can be achieved with smaller samplesizes. They contended that the effect of sampling error isminimal if unique loadings or variances are consistently low.MacCallum et al.’s research refutes traditional rules ofthumb about sample size in factor analysis. Nonetheless, weneed to interpret the confirmatory factor analysis findingswith some caution given their preliminary nature.

Our study findings may have selection bias resulting fromlow initial responses to mailed recruitment letters. Wewere however unable to estimate whether respondersdiffered from non-responders because medical data on non-responders was not available to the researchers. Theresults of our study, using a sample of patients from twoNew York City medical centers, may not generalize to thelarger U.S. population of adults with COPD. Therefore,further psychometric testing of the DMQ using samples fromother parts of the U.S. would be useful.

Conclusions

The DMQ-56 improves on the conceptual clarity andmeasurement breadth of the DMQ-30. The results of thisstudy provide preliminary empirical evidence of five distinctdimensions of dyspnea represented by 56 items of the DMQ,capturing a wide continuum of functional abilities andsatisfaction levels. The expanded DMQ-56 meets a need tocomprehensivelymeasure the cognitive, emotional, sensory,and behavioral components of dyspnea for adults with COPD.It uses dimensional scaling and IRT analyses to measure thedistinct dyspnea domains of dyspnea intensity, dyspneaanxiety, activity avoidance, activity self-efficacy, andstrategy satisfaction. The 56-item DMQ demonstrated goodpsychometric properties including internal consistency andtesteretest reliability and construct validity. The resultssupport using the DMQ to measure change in dyspnea func-tioning following clinical interventions for adults with COPD.

The analyses undertaken and results from this studywere important preparatory steps for future work to builddyspnea item banks and apply computer adaptive testingmethods for dyspnea outcome measurement in adults withCOPD. The study results provide a beginning foundation onwhich to develop a CAT version of the DMQ that has thepotential to further improve the instrument’s feasibility ofadministration, breadth of measurement, and sensitivity toclinically meaningful change in dyspnea-related outcomes.Future work planned on the DMQ will also include evalu-ating its responsiveness to change following therapeuticpulmonary interventions.

Acknowledgments

This research was funded by the National Institute onDisability and Rehabilitation Research, U.S. Department ofEducation (H133F040015) and subsequently by the NationalHeart, Lung, and Blood Institute (1R21HL091237-01).

Conflict of interest

The authors declare no conflict of interest.

452 A. Norweg et al.

References

1. American Thoracic Society. Dyspnea: mechanisms, assessment,and management: a consensus statement. Am J Respir CritCare Med 1999;159:321e40.

2. Breslin EH. Breathing retraining in chronic obstructive pulmo-nary disease. J Cardiopulm Rehabil 1995;15:25e33.

3. Lareau SC, Breslin EH, Meek PM. Functional status instruments:outcome measure in the evaluation of patients with chronicobstructive pulmonary disease. Heart Lung 1996;25:212e24.

4. O’Donnell DE, McGuire M, Samis L, Webb KA. The impact ofexercise reconditioning on breathlessness in severe chronicairflow limitation.Am J Respir Crit CareMed 1995;152:2005e13.

5. Sassi-Dambron DE, Eakin EG, Ries AL, Kaplan RM. Treatment ofdyspnea in COPD: a controlled clinical trial of dyspneamanagement strategies. Chest 1995;107:724e9.

6. Meek PM. Measurement of dyspnea in chronic obstructivepulmonary disease: what is the tool telling you? Chron RespirDis 2004;1:29e37.

7. Carrieri-Kohlman V, Douglas MK, Gormley JM, Stulbarg MS.Desensitization and guided mastery: treatment approaches forthe management of dyspnea. Heart Lung 1993;22:226e34.

8. Hu J, Meek P. Health-related quality of life in individuals withchronic obstructive pulmonary disease. Heart Lung 2005;34:415e22.

9. Morgan MDL, Singh SJ, Hyland ME. The relationship betweenphysical activity and quality of life in chronic lung disease. EurRespir Rev 1997;7:57e9.

10. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life: a conceptual model of patientoutcomes. JAMA 1995;273:59e65.

11. Moody L, McCormick K, Williams A. Disease and symptomseverity, functional status, and quality of life in chronicbronchitis and emphysema. J Behav Med 1990;13:297e306.

12. McCathie HCF, Spence SH, Tate RL. Adjustment to chronicobstructive pulmonary disease: the importance of psycholog-ical factors. Eur Respir J 2002;19:47e53.

13. Carrieri-Kohlman V, Gormley JM, Douglas MK, Paul SM,Stulbarg MS. Differentiation between dyspnea and its affectivecomponents. West J Nurs Res 1996;18:626e33.

14. Smoller JW, PollackMH,OttoMW,RosenbaumJF, KradinRL.Panicanxiety, dyspnea, and respiratory disease: theoretical and clin-ical considerations. Am J Respir Crit Care Med 1996;154:6e17.

15. Gift AG. Therapies for dyspnea relief. Holist Nurs Pract 1993;7:57e63.

16. Lareau SC, Meek PM, Roos PJ. Development and testing of themodified version of the pulmonary functional status anddyspnea questionnaire (PFSDQ-M). Heart Lung 1998;27:159e68.

17. Eakin EG, Resnikoff PM, Prewitt LM, Ries AL, Kaplan RM. Vali-dation of a new dyspnea measure: the UCSD shortness ofbreath questionnaire. Chest 1998;113:619e24.

18. Lee L, Friesen M, Lambert IR. Evaluation of dyspnea duringphysical and speech activities in patients with pulmonarydiseases. Chest 1998;113:625e32.

19. Wigal JK, Creer TL, Kotses H. The COPD self-efficacy scale.Chest 1991;99:1193e6.

20. Guyatt GH, Berman LB, Townsend M, Pugsley SO,Chambers LW. A measure of quality of life for clinical trials inchronic lung disease. Thorax 1987;42:773e8.

21. Migliore Norweg A, Whiteson J, Malgady R, Mola A, Rey M. Theeffectiveness of different combinations of pulmonary rehabil-itation program components: a randomized controlled trial.Chest 2005;128:663e72.

22. Hyland ME, Bott J, Singh S, Kenyon CA. Domains, constructsand the development of the breathing problems questionnaire.Qual Life Res 1994;3:245e56.

23. Haave E, Hyland ME, Engvik H. Physical and emotional aspectsof self-reported health status: a two-factor model of the short-form breathing problems questionnaire. Chron Respir Dis 2005;2:21e6.

24. Jones PW, Quirk FH, Baveystock CM, Littlejohns P. A self-complete measure of health status for chronic airflow limita-tion. The St. George’s respiratory questionnaire. Am RevRespir Dis 1992;145:1321e7.

25. Tu SP, McDonell MB, Spertus JA, Steele BG, Fihn SD. A new self-administered questionnaire to monitor health-related quality oflife in patients with COPD. Ambulatory Care Quality Improve-ment Project (ACQUIP) investigators. Chest 1997;112:614e22.

26. Williams J, Singh S, Sewell L, Guyatt GH, Morgan MD. Devel-opment of a self-reported chronic respiratory questionnaire(CRQ-SR). Thorax 2001;56:954e9.

27. Guell R, Casan P, Sangenis M, Morante F, Belda J, Guyatt GH.Quality of life in patients with chronic respiratory disease: theSpanish version of the chronic respiratory questionnaire (CRQ).Eur Respir J 1998;11:55e60.

28. Wijkstra PJ, TenVergert EM, Van Altena R, Otten V, Postma D,Kraan J, et al. Reliability and validity of the chronic respiratoryquestionnaire (CRQ). Thorax 1994;49:465e7.

29. Mahler DA, Weinberg DH, Wells CK, Feinstein AR. Themeasurement of dyspnea: contents, interobserver agreement,and physiologic correlates of two new clinical indexes. Chest1984;85:751e8.

30. Jette AM, Norweg A, Haley SM. Achieving meaningful quanti-fication of ICF domains. Disabil Rehabil 2008;30(12):963e9.

31. Migliore Norweg A, Whiteson J, Demetis S, Rey M. A newfunctional status outcome measure of dyspnea and anxiety foradults with lung disease: the dyspnea management question-naire (DMQ-30). J Cardiopulm Rehabil 2006;26:395e404.

32. Jette AM, Haley SM. Contemporary measurement techniquesfor rehabilitation outcome assessment. J Rehabil Med 2005;37:339e45.

33. Moore MC, Zebb BJ. The catastrophic misinterpretation ofphysiological distress. Behav Res Ther 1999;37:1105e18.

34. Cioffi D. Beyond attentional strategies: cognitive-perceptualmodel of somatic interpretation. Psychol Bull 1991;109:25e41.

35. Vlaeyen JW, Linton SJ. Fear-avoidance and its consequences inchronic musculoskeletal pain: a state of the art. Pain 2000;85:317e32.

36. Bandura A. Self-efficacy: toward a unifying theory of behav-ioral change. Psychol Rev 1977;84:191e215.

37. Linder-Pelz S. Toward a theory of patient satisfaction. Soc SciMed 1982;16:577e82.

38. Salant P, Dillman DA. How to conduct your own survey. NewYork: John Wiley & Sons, Inc; 1994.

39. Muthen BO, Muthen LK. Mplus: statistical analysis with latentvariables. Los Angeles: Statmodel; 2001.

40. Kline RB. Principles and practices of structural equationmodeling. New York: Guilford; 1998.

41. Hu LT, Bentler PM. Cutoff criteria for fit indexes in covariancestructure analysis: conventional criteria versus new alterna-tives. Struct Equ Modeling 1999;6:1e55.

42. Browne MW, Cudeck R. Alternative ways of assessing model fit.In: Bollen KA, Long JS, editors. Testing structural equationmodels. Thousand Oaks, CA: Sage; 1993. p. 136e62.

43. Fischer G, Molenaar I. Rasch models: foundations, recentdevelopments, and applications. Berlin: Springer-Verlag; 1995.

44. Andrich D. Rasch models for measurement. Beverly Hills, CA:Sage Publications; 1998.

45. McHorney CA. Health status assessment methods for adults:accomplishments and future challenges. Annu Rev PublicHealth 1999;20:309e35.

46. Siebens H, Andreas PL, Pengsheng N, Coster WJ, Haley SM.Measuring physical function in patients with complex medical

Outcome measurement for COPD 453

and postsurgical conditions: a computer adaptive approach.Am J Phys Med Rehabil 2005;84:741e8.

47. Devine C, Pearcy J. Meta-analysis of the effects of psycho-educational care in adults with chronic obstructive pulmonarydisease. Patient Educ Couns 1996;29:167e78.

48. Lacasse Y, Goldstein R, Lasserson TJ, Martin S. Pulmonaryrehabilitation for chronic obstructive pulmonary disease.Cochrane Database Syst Rev 2006;4. doi:10.1002/14651858.CD003793.pub2. Art. No.: CD003793.

49. Ware J, Bjorner J, Kosinski M. Practical implications of itemresponse theory and computerized adaptive testing. Med Care2000;38(Suppl. 2):73e82.

50. McHorney C, Cohen A. Equating health status measures withitem response theory. Med Care 2000;38(9 Suppl. 2):43e59.

51. Hambleton R. Emergence of item response modeling ininstrument development and data analysis. Med Care 2000;38(9 Suppl. 2):60e5.

52. Fries JF, Bruce B, Cella D. The promise of PROMIS: using itemresponse theory to improve assessment of patient-reportedoutcomes. Clin Exp Rheumatol 2005;39:S53e7.

53. MacCallum RC, Tucker LR. Representing sources of error in thecommon-factor model: implications for theory and practice.Psychol Bull 1991;109:502e11.

54. MacCallum RC, Widaman KF, Preacher KJ, Hong S. Sample sizein factor analysis: the role of model error. Multivariate BehavRes 2001;36:611e37.

55. MacCallum RC. Working with imperfect models. MultivariateBehav Res 2003;38:113e39.