the macnew heart disease health-related quality of life instrument: reference data for users

The MacNew heart disease health-related quality of life instrument: Reference

data for users

Tracy Dixon,1 Lynette L.-Y. Lim1 & Neil B. Oldridge2

1National Centre for Epidemiology and Population Health, Australian National University, Canberra,Australia (E-mail: [email protected]); 2Schools of Allied Health and Medicine, Indiana UniversityCenter for Aging Research, Regenstrief Institute for Health Care, Indianapolis, IN, USA

Accepted in revised form 20 November 2001

Abstract

Objective: To report reference data for the heart-specific MacNew Heart Disease Health-Related Qualityof Life instrument. Methods: One thousand five hundred and six patients with myocardial infarction(n ¼ 346), heart failure (n ¼ 201), and ischaemic heart disease (IHD, n ¼ 959) were surveyed 4 monthsafter hospital discharge. Quality of life scores were determined, stratified by diagnostic category, age andsex. Changes in scores from 4 to 8 months post-discharge were calculated for a subset of 830 patients,stratified by age and sex. Results: At 4 months there were no significant differences in scores betweenmyocardial infarction and electively admitted IHD patients, however the scores of heart failure patientswere significantly lower (indicating poorer quality of life) than those of patients with other diagnoses. Therewere few significant differences between age groups or sexes when comparing within diagnostic groups.Change from 4 to 8 months was not associated with diagnosis, age, or sex but was associated with eventswithin the period (readmission or revascularisation). The change data suggest that a value of 0.5 may be auseful indicator of the minimal clinically important difference. Conclusions: These reference data will assistin sample size calculations and with comparison of results in other studies, and will be of use to researcherswho are using or intending to use the MacNew instrument.

Key words: Health-related quality of life, Heart diseases, Minimal clinically important difference, Ques-tionnaires, Reference values

Abbreviations: AMI – acute myocardial infarction; HRQL – health-related quality of life; IHD – ischaemicheart disease; MCID – minimal clinically important difference; SRM – standardised response mean

Introduction

Health-related quality of life (HRQL) is a conceptwhich receives much attention in the medical re-search arena, and new instruments for measuringHRQL are continually being developed. As partof this development, psychometric properties suchas instrument validity and reliability need to beestablished, and these are often reported. How-ever, additional information is needed before theinstrument can be used effectively by researchersin new studies with different settings. Typically,

the potential user will need statistics of the in-strument scores, or change in scores, in order todetermine the sample size required for the newstudy, as well as a range of scores in various pa-tient settings – ‘normative’ data – with which tocompare results. Such data are seldom readilyavailable.

There has been considerable interest in theMacNew heart disease HRQL instrument [1–3], amodified version of an original instrument pub-lished in 1991 [4]. The purpose of this paper istwofold:

Quality of Life Research 11: 173–183, 2002.� 2002 Kluwer Academic Publishers. Printed in the Netherlands.

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(1) to report normative data for the MacNew in-strument when administered 4 months post-dis-charge; and(2) to describe the changes in MacNew scoresfrom this 4-month point to a second administra-tion point 4 months later.We present results from the first two waves of alongitudinal, population-based study into thequality of life of Australian adult cardiac patients,in which MacNew is administered at 4, 8, 12 and24 months after discharge from hospital.

Methods

The MacNew HRQL instrument

The MacNew instrument (see Appendix 1) haspreviously been shown to be a valid, reliable andresponsive instrument for measuring the HRQL ofcardiac patients after myocardial infarction, inboth interviewer-administered [1, 4] and self-ad-ministered [2, 3] modes. It has also been success-fully used in patients with heart failure andischaemic heart disease (IHD), primarily angina [5,6, 7]. The instrument consists of 27 items, each witha seven-point Likert response scale, measuring thethree inter-related domains of emotional, physicaland social well-being. Domain scores are calculatedby taking the average of the responses to the itemsin each domain; averaging all 27 items gives aglobal score. Missing items do not contribute to thescore, and if less than half the items in a domainhave been completed a score is not calculated forthat domain. Possible scores range from 1 to 7,with a higher score indicating a better HRQL.

Study protocol

The MacNew instrument, along with questions ondemographics, lifestyle and general health, wassent as a mailed survey to cardiac patients as partof the longitudinal Quality of Life Study, con-ducted in the Hunter Region of New South Wales,Australia (adult population approximately340,000). This study, which involves patients fromall 15 public and three of the seven private hos-pitals in the Hunter region, aims to explore therelationships between HRQL and later outcomesin adults with heart disease, in particular those

diagnosed with acute myocardial infarction(AMI), heart failure, unstable angina pectoris,stable angina pectoris, or chronic IHD (ICD-9-CM [8] codes 410, 428, 411.1, 413 and 414, re-spectively). Patients between the ages of 20 and 85who were discharged from hospital with these di-agnoses between 1 December 1996 and 31 January1998 were eligible to participate in the study. Apatient’s first eligible hospital admission duringthis period was designated as their index event.

The survey package was mailed to all eligiblepatients not known to be deceased 4 monthsafter index discharge (T1). Up to three writtenreminders followed, after 2, 8 and 10 weeks. Thosepatients who returned this first questionnaire andagreed to continue with the study were sent asecond questionnaire package 4 months later,approximately 8 months after the index dis-charge (T2). This second package was again foll-owed by up to three written reminders whennecessary.

Reference and change groups

Two patient groups were defined for this analysis.The reference group consists of those patients whoanswered the T1 surveys between 3 and 5 monthsafter their hospital discharge and had at least 85%(23) of the 27 MacNew items completed(n ¼ 1506). The change group is a subset of thereference group and consists of those patients whoanswered the second (T2) MacNew between 3 and5 months after the first and for whom globalscores could be computed at both points(n ¼ 830). (See Figure 1 for details.)

The Quality of Life Study was approved by theUniversity of Newcastle Ethics Committee, theHunter Area Research Ethics Committee, andeach of the private institutions. Informed consentwas obtained from all participants.

Statistical analysis

The normative data are broken down by diag-nostic group, sex and age. Three diagnostic groupswere defined: AMI, heart failure, and IHD (whichincludes stable and unstable angina and chronicIHD). The IHD group was further divided byadmission type into categories ‘elective’ and‘emergency’. An ‘elective’ admission was defined

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as a previously planned admission to a hospital forsome test or intervention. All admissions notmeeting this criteria were classified as ‘emergency’.Data in AMI and heart failure patients have notbeen divided by admission type since the majorityof admissions with these diagnoses were emer-gency (only three and 10 elective admissions, re-spectively). The majority (94.5%) of IHD patientshaving elective admissions were given a primarydiagnosis of either stable angina or chronic IHD,whereas only 26% of the emergency IHD admis-sions had these diagnoses. We have presented thedata separately for the two IHD admission typessince their reasons for admission will be differentand they may be considered to represent differentstages of illness, with emergency patients havingexperienced an event more recently. Differences inscores between diagnoses, age groups and sexeswere examined using non-parametric Mann–Whitney and Kruskal–Wallis tests.

Data on changes in score from 4 to 8 months aredivided by age and sex. More detailed data than arepresented here may be obtained from the authors.

Clinically important change

A problem often faced in studies which measurechange over time is determining whether thedemonstrated change is clinically meaningful. Thevalue which corresponds to the smallest amount ofchange required for the difference to represent aclinically meaningful change is known as theminimal clinically important difference (MCID).One way of determining the MCID is to look atthe effect size, calculated as the standardised re-sponse mean (SRM), which is defined as the meanchange in scores over time divided by the standarddeviation of the change. An SRM of 0.2 is con-sidered to be a minimal important change, 0.5 isconsidered moderate while 0.8 is consideredstrong.

We calculated the SRM for each domain inthree subgroups of patients from the changegroup: those who were revascularised between T1and T2, those who were readmitted as emergencycardiac patients between T1 and T2, and the re-mainder. Only the scores of the IHD patients wereused due to the small numbers of AMI and heartfailure patients. We hypothesised that the scores ofthe revascularised patients would increase (andhave a positive SRM), those of the readmittedpatients would decrease (negative SRM), andthose of the remainder should be relatively stable(SRM of zero).

Results

Demographic characteristics of the two groups arepresented in Table 1.

Data considerations

The reference group were more likely to beyounger (median 66.2 vs. 67.1 years, p ¼ 0.001),male (67 vs. 63%, p ¼ 0.010), and emergency pa-tients (72 vs. 64%, p ¼ 0.001) than the Huntercardiac population (i.e., all patients fulfilling studyeligibility criteria between July 1995 and December1998). Only 48 questionnaires (2.4%) were ex-

Figure 1. Response rates at T1 and T2. Values in italics were

subtracted from the denominator when calculating rates.

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cluded from the normative analysis due to havingtoo many missing values, and there were no com-mon factors relating these people. Ninety-one percent (91%) of the questionnaires had no missingvalues, and only two items were less than 99%completed.

Normative data

The distributions of all four MacNew scores arenegatively skewed (Figure 2) with medians gener-ally around 5, and few patients have scores at thefloor (score of 1) or ceiling (score of 7). Trends inscores across age groups are not consistent acrossthe diagnostic categories (Table 2). The electiveIHD group generally have similar scores to theAMI patients, while scores in the emergency IHDgroup are slightly lower, although generally not

significantly so. Heart failure patients have thelowest HRQL scores in all four areas.

Change in scores

The mean changes in scores were calculated as themean of [score(T2)�score(T1)], so that a negativechange implies a decrease in score (and hence inHRQL). Each of the diagnostic categories showedsimilar distributions and so have been combined.The distributions of the change scores are allsymmetrical about 0, implying that as many peo-ple increased in score as decreased. While the inter-quartile range is narrow (from �0.5 to +0.5), theoverall range of change scores is wide: generallyfrom �4 to +4 (Figure 3). There is little variationin this distribution when comparing between agegroups or sexes (Table 3).

Clinically important change

Table 4 shows a possible indication of clinicallyimportant change for the MacNew in the IHDpatients from this sample. Those patients who hadbeen revascularised between T1 and T2 showed amean increase of 0.47 to 0.69 points, while thosewho were readmitted in this period following an-other cardiac event showed a mean decrease of0.53 to 0.60 points. The mean change in patientswho were neither readmitted nor revascularisedranged from 0.00 to +0.07 points. A similar pat-tern emerged when considered separately withinage groups and sexes (data not shown). SRMswere around �0.4 for readmitted patients, 0.4 forrevascularised patients, and close to zero for theremainder. This is a minimal to moderate changeand seems to suggest that a difference of 0.5 pointsprobably approximates the MCID and may beuseful as an indicator of clinically importantchange in HRQL in IHD patients.

Discussion

These reference values will be useful to researchersusing or intending to use the MacNew instrument.While many studies look at changes in HRQLbefore and after an intervention, details of thescores or changes are seldom published, creatingdifficulties for the design of new studies. The nor-

Table 1. Characteristics of samples

Normative sample

n = 1506 n (%)

Change sample

n = 830 n (%)

Age

Under 65 600 (40) 350 (42)

65–74 562 (37) 308 (37)

75+ 344 (23) 172 (21)

Sex

Male/female 1006/500 (67/33) 573/257 (69/31)

Index diagnosis

AMI 346 (23) 194 (23)

Heart failure 201 (13) 91 (11)

IHD

Unstable angina pectoris 434 (29) 239 (29)

Stable angina pectoris 282 (19) 167 (20)

Other chronic IHD 243 (16) 139 (17)

Index admission type

Emergency 1091 (72) 581 (70)

Elective 415 (28) 249 (30)

Marital status

Married 1015 (67) 593 (71)

Widowed/divorced/

separated

371 (25) 177 (22)

Never married 96 (6) 44 (5)

Unknown 24 (2) 16 (2)

Mean MacNew scores

at T1

Emotional 5.04 5.13

Physical 4.79 4.91

Social 5.17 5.27

Global 4.98 5.08

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mative and change data presented here provide arange of scores and change in scores in variouspatient groups. These data are essential for the userto determine sample size calculations and studydesign. Realistic estimates of clinically importantchange are also needed in determining sample size,as well as providing a reference point for assessingthe effectiveness of any treatment or interventions.In comparative intervention studies, our resultssuggest that a difference of 0.5 between interven-tion groups implies that, on average, patients in thebetter group have HRQL which has improved byan amount similar to improvement due to revas-cularisation. This is useful for both interpretationof results and for determining the sample sizeneeded in new studies. If the instrument is used as ascreen for change in individual patient health, a

decline of 0.5 could be a marker for further inves-tigation.

Juniper et al. [9] previously reported that ‘(theirswas) the third study to demonstrate that in disease-specific quality of life instruments, using 7-pointscale response options, a change in score of 0.5represents the minimal important difference’ [p84]and that ‘It would be very convenient if all evalu-ative instruments using 7-point scale responseoptions demonstrated similar properties’ [p85].The results presented here for the heart-specificMacNew instrument in IHD patients, using a7-point response scale, also suggest that a changeof 0.5 points represents minimal to moderatelyimportant change. Using a moderate effect size,we have calculated a similar MCID in globalMacNew HRQL scores in 201 patients with AMI

Figure 2. Histograms displaying the non-normal behaviour of MacNew scores (all patients combined). Each bar represents the range

of possible scores within each whole number (i.e. the left hand bar is 1.00 to 1.99, the next is 2.00 to 2.99, etc) while the rightmost bar

shows the number of patients scoring at the ceiling (7.00).

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Table 2. Normative (4 months post-discharge) data

Under 65 65–74 75–85 Under 65 65–74 75–85

(a) For AMI and heart failure patients by age and sex

AMI

N 130 77 42 34 38 25

Emotional

Mean (SD) 5.26 (1.16) 5.39 (1.23) 5.52 (0.83) 4.93 (1.24) 5.01 (1.12) 4.93 (1.40)

Median (Q1, Q3) 5.46 (4.45, 6.29) 5.64 (4.57, 6.39) 5.75 (5.00, 6.09) 5.11 (4.05, 5.96) 5.29 (4.24, 5.86) 5.21 (3.82, 6.18)

Physical

Mean (SD) 5.22 (1.18) 5.06 (1.27) 4.93 (1.11) 5.29 (1.14) 4.77 (1.05) 4.55 (1.61)

Median (Q1, Q3) 5.57 (4.29, 6.14) 5.50 (4.29, 6.07) 5.18 (4.16, 5.87) 5.55 (4.41, 6.21) 5.00 (3.79, 5.57) 4.86 (3.08, 5.96)

Social

Mean (SD) 5.43 (1.27) 5.38 (1.38) 5.41 (1.15) 5.53 (1.20) 5.35 (1.16) 4.97 (1.51)

Median (Q1, Q3) 5.76 (4.69, 6.54) 5.77 (4.46, 6.58) 5.73 (4.81, 6.27) 5.85 (4.69, 6.42) 5.58 (4.71, 6.28) 5.23 (3.44, 6.27)

Global

Mean (SD) 5.29 (1.10) 5.27 (1.17) 5.26 (0.88) 5.17 (1.10) 4.96 (0.96) 4.77 (1.41)

Median (Q1, Q3) 5.54 (4.51, 6.19) 5.59 (4.46, 6.22) 5.52 (4.84, 5.86) 5.50 (4.33, 5.85) 5.19 (4.20, 5.60) 5.19 (3.60, 6.02)

Heart Failure

N 26 45 41 12 32 45

Emotional

Mean (SD) 4.41 (1.34) 4.56 (1.30) 4.91 (1.22) 4.84 (1.58) 4.29 (1.44) 4.41 (1.26)

Median (Q1, Q3) 4.18 (3.27, 5.55) 4.29 (3.61, 5.59) 5.14 (3.79, 5.82) 5.32 (3.29, 6.41) 4.37 (3.21, 5.75) 4.57 (3.21, 5.39)

Physical

Mean (SD) 3.98 (1.22) 4.02 (1.41) 4.07 (1.10) 4.99 (1.41) 3.74 (1.23) 3.83 (1.35)

Median (Q1, Q3) 3.96 (2.84, 4.95) 3.79 (3.07, 5.18) 4.00 (3.11, 4.89) 5.79 (3.87, 6.11) 3.67 (2.95, 4.61) 4.00 (2.68, 4.89)

Social

Mean (SD) 4.25 (1.25) 4.22 (1.51) 4.51 (1.30) 5.15 (1.69) 4.13 (1.39) 4.11 (1.54)

Median (Q1, Q3) 4.08 (3.27, 5.27) 4.08 (2.92, 5.50) 4.85 (3.62, 5.28) 5.77 (3.60, 6.69) 4.21 (3.04, 5.12) 4.23 (2.85, 5.31)

Global

Mean (SD) 4.25 (1.17) 4.35 (1.26) 4.56 (1.07) 4.97 (1.43) 4.08 (1.25) 4.19 (1.26)

Median (Q1, Q3) 4.31 (3.25, 5.24) 4.19 (3.54, 5.41) 4.69 (3.62, 5.37) 5.37 (3.66, 6.29) 4.26 (3.13, 4.93) 4.26 (2.94, 5.23)

(b) For IHD patients, by admission type, age and sex

Emergency IHD

N 140 128 80 67 73 69

Emotional

Mean (SD) 4.99 (1.34) 5.24 (1.26) 5.13 (1.17) 4.94 (1.19) 4.62 (1.28) 4.63 (1.15)

Median (Q1, Q3) 5.21 (4.23, 5.98) 5.50 (4.43, 6.34) 5.32 (4.43, 6.05) 5.14 (4.29, 5.79) 4.57 (3.75, 5.54) 4.64 (3.82, 5.57)

Physical

Mean (SD) 4.87 (1.47) 4.74 (1.30) 4.38 (1.31) 5.08 (1.16) 4.69 (1.27) 4.37 (1.24)

Median (Q1, Q3) 5.14 (3.80, 6.14) 4.96 (3.73, 5.84) 4.43 (3.37, 5.45) 5.21 (4.36, 6.14) 4.83 (3.70, 5.81) 4.18 (3.39, 5.54)

Social

Mean (SD) 5.24 (1.46) 5.22 (1.37) 4.90 (1.43) 5.52 (1.26) 5.15 (1.37) 4.72 (1.31)

Median (Q1, Q3) 5.65 (4.02, 6.49) 5.35 (4.46, 6.45) 5.27 (3.90, 6.00) 5.85 (4.85, 6.54) 5.38 (4.08, 6.35) 4.50 (3.91, 5.77)

Global

Mean (SD) 5.00 (1.32) 5.04 (1.21) 4.80 (1.20) 5.10 (1.11) 4.75 (1.21) 4.55 (1.09)

Median (Q1, Q3) 5.19 (4.16, 6.06) 5.22 (4.27, 5.99) 4.89 (4.13, 5.77) 5.26 (4.41, 6.04) 4.89 (3.70, 5.75) 4.44 (3.85, 5.52)

Elective IHD

N 145 123 29 46 46 13

Emotional

Mean (SD) 5.18 (1.36) 5.52 (1.10) 5.39 (1.26) 4.61 (1.48) 4.99 (1.08) 4.88 (1.56)

Median (Q1, Q3) 5.50 (4.29, 6.32) 5.71 (4.79, 6.43) 5.71 (4.43, 6.39) 4.52 (3.96, 5.89) 5.14 (4.20, 5.95) 5.36 (3.54, 6.25)

Physical

Mean (SD) 5.14 (1.42) 5.27 (1.20) 4.89 (1.35) 4.78 (1.25) 4.83 (1.16) 4.62 (1.16)

Median (Q1, Q3) 5.43 (4.43, 6.21) 5.43 (4.57, 6.21) 5.07 (4.01, 5.71) 4.96 (3.87, 5.82) 4.82 (3.77, 5.66) 4.21 (3.52, 5.85)

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undergoing rehabilitation, and an MCID of ap-proximately 0.6 points in 158 patients with angio-graphically documented angina treated withmedication, percutaneous transluminal coronaryangioplasty, or coronary artery bypass surgery(NBO, unpublished data). These observationsprovide some preliminary substantiation of an in-triguing outcome and deserve further investigation.

Generalisability

The initial response rate of 71.5% is above averagefor a mailed survey of this nature [10]. Beingpopulation-based, the patient sample in theQuality of Life Study is fairly representative of thegeneral cardiac population recently dischargedfrom hospital, although slightly different in age-sex structure. Since proportionally higher recruit-ment of females and elderly subjects appears to be

Table 2. (Continued)

Under 65 Male 65–74 75–85 Under 65 Female 65–74 75–85

Social

Mean (SD) 5.39 (1.45) 5.63 (1.17) 5.38 (1.36) 5.22 (1.34) 5.51 (1.12) 5.05 (1.22)

Median (Q1, Q3) 5.77 (4.54, 6.58) 5.92 (5.15, 6.54) 5.69 (4.69, 6.42) 5.42 (4.52, 6.40) 5.88 (4.65, 6.43) 4.77 (3.92, 6.31)

Global

Mean (SD) 5.23 (1.31) 5.45 (1.07) 5.19 (1.25) 4.79 (1.29) 5.02 (1.01) 4.79 (1.25)

Median (Q1, Q3) 5.48 (4.35, 6.26) 5.70 (4.81, 6.26) 5.37 (4.28, 6.09) 4.72 (4.06, 5.90) 5.15 (4.26, 5.90) 4.67 (3.69, 6.09)

Figure 3. Boxplots of change in scores from 4 to 8 months, for

all patients. Boxes show median and quartiles while the bars

extend 1.5 box lengths either side. Outliers (values outside this

range) are marked by stars.

Table 3. Changes in MacNew scores between 4 and 8 months post-discharge, grouped by age and sex

All patients Under 65 Male 65–74 75–85 Under 65 Female 65–74 75–85

N 830 263 213 97 87 95 75

Emotional

Mean (SD) �0.01 (0.94) �0.07 (0.99) �0.04 (0.84) �0.04 (0.81) 0.02 (0.99) 0.19 (0.97) �0.02 (1.05)

Median 0.04 0.00 0.00 0.05 0.00 0.14 0.07

(25%, 75%) (�0.50, 0.43) (�0.57, 0.43) (�0.43, 0.43) (�0.44, 0.43) (�0.36, 0.50) (�0.29, 0.64) (�0.64, 0.50)

Physical

Mean (SD) 0.02 (0.88) 0.02 (0.92) 0.01 (0.83) �0.04 (0.80) �0.03 (0.74) 0.14 (0.93) �0.01 (1.06)

Median 0.07 0.07 0.00 0.07 0.00 0.00 0.07

(25%, 75%) (�0.43, 0.43) (�0.43, 0.50) (�0.43, 0.43) (�0.37, 0.36) (�0.43, 0.43) (�0.48, 0.57) (�0.64, 0.57)

Social

Mean (SD) 0.05 (0.97) 0.00 (0.99) 0.04 (0.94) 0.06 (0.96) 0.02 (0.86) 0.23 (0.98) 0.01 (1.13)

Median 0.05 0.08 0.00 0.08 0.00 0.08 0.12

(25%, 75%) (�0.46, 0.54) (�0.46, 0.46) (�0.54, 0.51) (�0.39, 0.56) (�0.46, 0.62) (�0.31, 0.85) (�0.50, 0.60)

Global

Mean (SD) 0.01 (0.82) �0.03 (0.87) �0.01 (0.77) �0.03 (0.72) 0.01 (0.78) 0.17 (0.83) �0.01 (0.94)

Median 0.04 0.04 0.00 0.02 0.04 0.15 0.11

(25%, 75%) (�0.41, 0.42) (�0.41, 0.41) (�0.37, 0.38) (�0.38, 0.37) (�0.41, 0.36) (�0.31, 0.56) (�0.56, 0.67)

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a commonly encountered problem in studies ofthis type, we believe that these results are a goodsample of the responses which could be expectedupon surveying a group of cardiac patients by mailin the early months of recovery. Readers howevershould be aware of the low number of subjectsin some subgroups, namely females under 65with heart failure and 75–85 with elective IHD(Table 2). The results pertaining to these sub-groups should be interpreted with caution.

Unfortunately 25% of the surveys returned werecompleted too long after discharge to be used inthis analysis, including almost two-thirds of thosefrom private hospital patients, a result of privacyissues and the protocol necessary for contactingthese people. However, the high overall responseand completion rates are further evidence of theinstrument’s acceptability to patients, which wasdocumented previously by Valenti et al. [3], andrecently by one of the authors in 158 patients withangiographically documented angina (NBO, un-published data).

Copies of the MacNew instrument and itsscoring system are available from the [email protected] or [email protected] is also information online at http://www.QLMed.org/QLMI/index.html on the web-site ‘Instruments for Quality of Life Assessment inMedicine’ hosted by the Division of Psychology,Istituto Nazionale Tumori, Milan, Italy.

Acknowledgements

This work is supported by a National Health andMedical Research Council (Australia) grant, andwas performed at the National Centre for Epi-demiology and Population Health, AustralianNational University, ACT, Australia. The authorswish to thank Professor R.F. Heller for helpfulcomments on this paper.

Appendix 1

MACNEW

HEART DISEASE HEALTH-RELATED QUALITY OF

LIFE QUESTIONNAIRE

We would now like to ask you some questions about how you

have been feeling DURING THE LAST 2 WEEKS.

Please check the box h that matches your answer

1. In general, how much of the time during the last 2 weeks

have you felt frustrated, impatient or angry?

1 h ALL OF THE TIME

2 h MOST OF THE TIME

3 h A GOOD BIT OF THE TIME

4 h SOME OF THE TIME

5 h A LITTLE OF THE TIME

6 h HARDLY ANY OF THE TIME

7 h NONE OF THE TIME

2. How often during the last 2 weeks have you felt worthless or

inadequate?

1 h ALL OF THE TIME







3. In the last 2 weeks, how much of the time did you feel very

confident and sure that you could deal with your heart

problem?






6 h ALMOST ALL OF THE TIME

7 h ALL OF THE TIME

4. In general how much of the time did you feel discouraged or

down in the dumps during the last 2 weeks?

1 h ALL OF THE TIME







Table 4. Mean (SD) changes and SRMs of MacNew scores for IHD patients, by readmission status between 4 and 8 months

Revascularised n = 33 Readmitted event n = 21 Neither n = 491

Mean (SD) SRM Mean (SD) SRM Mean (SD) SRM

Emotional 0.47 (1.28) 0.37 �0.53 (1.32) �0.41 0.00 (0.84) 0.00

Physical 0.69 (1.45) 0.48 �0.58 (1.26) �0.46 0.03 (0.77) 0.03

Social 0.58 (1.55) 0.38 �0.60 (1.67) �0.36 0.07 (0.82) 0.08

Global 0.55 (1.32) 0.42 �0.55 (1.25) �0.44 0.01 (0.72) 0.02

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5. How much of the time during the past 2 weeks did you feel

relaxed and free of tension?






6 h ALMOST ALL OF THE TIME

7 h ALL OF THE TIME

6. How often during the last 2 weeks have you felt worn out or

low in energy?

1 h ALL OF THE TIME







7. How happy, satisfied, or pleased have you been with your

personal life during the last 2 weeks?

1 h VERY DISSATISFIED, UNHAPPY MOST OF THE

TIME

2 h GENERALLY DISSATISFIED, UNHAPPY

3 h SOMEWHAT DISSATISFIED, UNHAPPY

4 h GENERALLY SATISFIED, PLEASED

5 h HAPPY MOST OF THE TIME

6 h VERY HAPPY MOST OF THE TIME

7 h EXTREMELY HAPPY, COULD NOT HAVE BEEN

MORE SATISFIED OR PLEASED

8. In general, how often during the last 2 weeks have you felt

restless, or as if you were having difficulty trying to calm

down?

1 h ALL OF THE TIME







9. How much shortness of breath have you experienced during

the last 2 weeks while doing your day-to-day physical ac-

tivities?

1 h EXTREME SHORTNESS OF BREATH

2 h VERY SHORT OF BREATH

3 h QUITE A BIT OF SHORTNESS OF BREATH

4 h MODERATE SHORTNESS OF BREATH

5 h SOME SHORTNESS OF BREATH

6 h A LITTLE SHORTNESS OF BREATH

7 h NO SHORTNESS OF BREATH

10. How often during the last 2 weeks have you felt tearful, or

like crying?

1 h ALL OF THE TIME







11. How often during the last 2 weeks have you felt as if you

are more dependent than you were before your heart

problem?

1 h ALL OF THE TIME







12. How often during the last 2 weeks have you felt you were

unable to do your usual social activities, or social activities

with your family?

1 h ALL OF THE TIME







13. How often during the last 2 weeks have you felt as if others

no longer have the same confidence in you as they did be-

fore your heart problem?

1 h ALL OF THE TIME







14. How often during the last 2 weeks have you experienced

chest pain while doing your day-to-day activities?

1 h ALL OF THE TIME







15. How often during the last 2 weeks have you felt unsure of

yourself or lacking in self-confidence?

1 h ALL OF THE TIME







16. How often during the last 2 weeks have you been bothered

by aching or tired legs?

1 h ALL OF THE TIME



181





17. During the last 2 weeks, how much have you been limited

in doing sports or exercise as a result of your heart prob-

lem?

1 h EXTREMELY LIMITED

2 h VERY LIMITED

3 h LIMITED QUITE A BIT

4 h MODERATELY LIMITED

5 h SOMEWHAT LIMITED

6 h LIMITED A LITTLE

7 h NOT LIMITED AT ALL

18. How often during the last 2 weeks have you felt appre-

hensive or frightened?

1 h ALL OF THE TIME







19. How often during the last 2 weeks have you felt dizzy or

lightheaded?

1 h ALL OF THE TIME







20. In general during the last 2 weeks, how much have you

been restricted or limited as a result of your heart problem?


2 h VERY LIMITED






21. How often during the last 2 weeks have you felt unsure as

to how much exercise or physical activity you should be

doing?

1 h ALL OF THE TIME







22. How often during the last 2 weeks have you felt as if your

family is being over-protective toward you?

1 h ALL OF THE TIME







23. How often during the past 2 weeks have you felt as if you

were a burden on others?

1 h ALL OF THE TIME







24. How often during the past 2 weeks have you felt excluded

from doing things with other people because of your heart

problem?

1 h ALL OF THE TIME







25. How often during the past 2 weeks have you felt unable to

socialize because of your heart problem?

1 h ALL OF THE TIME







26. In general, during the last 2 weeks how much have you

been physically restricted or limited as a result of your heart

problem?


2 h VERY LIMITED






27. How often during the last 2 weeks have you felt your heart

problem limited or interfered with sexual intercourse?

1 h ALL OF THE TIME







8 h NOT APPLICABLE

That’s the end. Thanks very much for answering the questions.

[July 2000]

182

References

1. Hillers TK, Guyatt GH, Oldridge N, et al. Quality of life

after myocardial infarction. J Clin Epidemiol 1994; 47(11):

1287–1296.

2. Lim LL-Y, Valenti LA, Knapp JC, et al. A self-adminis-

tered quality of life questionnaire after acute myocardial

infarction. J Clin Epidemiol 1993; 46(11): 1249–1256.

3. Valenti L, Lim L, Heller RF, Knapp J. An improved

questionnaire for assessing quality of life after acute myo-

cardial infarction. Qual Life Res 1996; 5: 151–161.

4. Oldridge N, Guyatt G, Jones N, et al. Effects on quality of

life with comprehensive rehabilitation after acute myocar-

dial infarction. Am J Cardiol 1991; 67: 1084–1089.

5. Dixon T, Lim LL-Y, Powell H, Fisher JD. Psychosocial

experiences of cardiac patients in early recovery: A

community-based study. J Adv Nurs 2000; 31(6): 1368–

1375.

6. Lim LL-Y, Johnson NA, O’Connell RL, Heller RF.

Quality of life and later adverse health outcomes in patients

with suspected heart attack. A NZ J Public Health 1998;

22(5): 540–546.

7. Foster C, Oldridge NB, Dion W, et al. Time course of re-

covery during cardiac rehabilitation. J Cardiopulmonary

Rehabil 1995; 15: 209–215.

8. Community and Health Services Tasmania. ICD-9-CM

International Classification of Diseases, 9th ed. Clinical

Modification, vol. 1. Hobart, Tasmania: Department of

Community and Health Services, 1992.

9. Juniper EF, Guyatt GH, Willan A, Griffith LE. Deter-

mining a minimal important change in a disease-specific

quality of life questionnaire. J Clin Epidemiol 1994; 47(1):

81–87.

10. Asch DA, Jedrziewski MK, Christakis NA. Response rates

to mail surveys published in medical journals. J Clin Epi-

demiol 1997; 50(10): 1129–1136.

Address for correspondence: Tracy Dixon, Cardiovascular Dis-

ease and Diabetes Monitoring Unit, Australian Institute of

Health and Welfare, P.O. Box 570, Canberra ACT 2601, Aus-

tralia

Phone: +61-2-62441283; Fax: +61-2-62441044

E-mail: [email protected]

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the macnew heart disease health-related quality of life instrument: reference data for users

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