John S. Rumsfeld|Karen P. Alexander|David C. Goff|Michelle M. Graham|P. Michael Ho|Frederick A. Masoudi|Debra K. Moser|Véronique L. Roger|Mark S. Slaughter|Kim G Smolderen|John A. Spertus|Mark D. Sullivan|Diane Treat?Jacobson|Julie Johnson Zerwic
Cardiovascular Health: The Importance of Measuring Patient-Reported Health Status
homecirculationvol 127 22cardiovascular health importance measuring patientreported health status free accessresearch articlepdfepubaboutview pdfview epubsections toolsadd favoritesdownload citationstrack citationspermissions shareshare onfacebooktwitterlinked inmendeleyreddit jump tofree accessresearch articlepdfepubcardiovascular health importance measuring patientreported health statusa scientific statement american heart association john rumsfeld md phd faha karen p alexander md faha david c goffjr md phd faha michelle graham md p michael ho md phd faha frederick masoudi md msph faha debra k moser dnsc rn faha vronique l roger md mph faha mark slaughter md faha kim g smolderen phd john spertus md mph faha mark sullivan md phd diane treatjacobson phd rn faha julie j zerwic phd rn fahaon behalf american heart association council quality care outcomes research council cardiovascular stroke nursing council epidemiology prevention council peripheral vascular disease stroke council john rumsfeldjohn rumsfeld search papers author karen p alexanderkaren p alexander search papers author david c goffjrdavid c goffjr search papers author michelle grahammichelle graham search papers author p michael hop michael ho search papers author frederick masoudifrederick masoudi search papers author debra k moserdebra k moser search papers author vronique l rogervronique l roger search papers author mark slaughtermark slaughter search papers author kim g smolderenkim g smolderen search papers author john spertusjohn spertus search papers author mark sullivanmark sullivan search papers author diane treatjacobsondiane treatjacobson search papers author julie j zerwicjulie j zerwic search papers author behalf american heart association council quality care outcomes research council cardiovascular stroke nursing council epidemiology prevention council peripheral vascular disease stroke council originally published6 may 2013httpsdoiorg101161cir0b013e3182949a2ecirculation 201312722332249other versions articleyou viewing recent version article previous versions january 1 2013 previous version 1 1 introductionthe principal goals health care help people live longer live better optimize survival health american heart associations aha special report defining setting national goals cardiovascular health promotion disease reduction american heart associations strategic impact goal 2020 beyond aha set following goalby 2020 improve cardiovascular health americans 20 reducing deaths cardiovascular diseases stroke 201the emphasis improving cardiovascular health laudable yet raises question cardiovascular health best measured indeed metrics cardiovascular health well delineated compared cardiovascular mortality morbidity outcomesthe ahas strategic goals primarily focus ideal health behaviors eg smoking ideal health factors eg blood pressure control metrics cardiovascular health1 although clear import directly address world health organizations definition health state complete physical mental social wellbeing2 moreover institute medicine identified patientcentered care 1 6 domains highquality health care wherein patientcentered care supports clinicians attending patients physical emotional needs maintaining improving quality life3 patientcentered outcomes research institute emphasizes goal focusing outcomes people notice care survival function symptoms health related quality life4 recent concepts value health care triple aim center improving patients health experience health care reducing costs reinforces importance assessing impact disease medical treatment patients functional status quality life56 definition health concepts patientcentered care directly support measurement patient health status key metric cardiovascular healthaccordingly goal scientific statement review advocate patientreported health status measure cardiovascular health present statement defines patient health status context cardiovascular health describes key aspects patient health status surveys emphasis currently available cardiovascular disease cvdspecific instruments subsequent sections synthesize current literature providing examples studies used cardiovascular patientreported health status measures outcomes independent predictor variables areas need additional research highlighted throughout statement describes potential uses cardiovascular patientreported health status clinical decision making population health surveillance noting barriers need overcome realize potential ultimately present statement intended support ahas efforts promote inclusion patient health status measure cardiovascular health setting organizational goals advocating cardiovascular health table 1table 1 top things knowimproving cardiovascular health central goal cardiovascular care specific aim american heart associations strategic goals however measures cardiovascular health beyond mortality morbidity outcomes well specifiedpatientreported health status includes symptom burden functional status hrql important measure healthvalidated patient health status surveys including diseasespecific instruments patients cardiovascular disease allow quantification critical patientcentered outcomecardiovascular patient health status surveys used successfully clinical trials research studies quantify treatment benefits regard symptoms functional status hrql however remain underutilizedin addition cardiovascular diseasespecific factors contributing worse patient health status eg amount angina coronary artery disease key cofactors must recognized eg comorbid depression also special considerations measurement health status cohorts elderlypatientreported health status independent predictor subsequent mortality cardiovascular events hospitalization costs care potential implications risk adjustment targeting healthcare resourcespatient health status data potential inform clinical decision making particular information important shared decision makingcardiovascular patient health status assessments facilitate disease surveillance quantify populations health entities accountable care organizations yet incorporated population healthdisease surveillance efforts integration health status activities may enhance patientcenteredness care better characterize impact healthcare delivery patient healthadditional research needed better understand determinants patient health status effects interventions cardiovascular health effective strategies incorporate cardiovascular patient health status measurement clinical practice disease surveillancehrql indicates healthrelated quality life2 executive summarypatient health status includes 3 components symptom burden functional status healthrelated quality life hrql figure7 symptom burden includes types frequency symptoms patient may manifestation disease medical treatments eg symptoms side effects medications functional status includes physical mentalemotional social function finally hrql perception discrepancy actual desired functional status overall impact disease wellbeing givenpatientdownload figuredownload powerpointfigure patientreported health status disease medical treatments eg side effects complications modified rumsfeld et al7 copyright 2002 american heart association inc modified spertus et al8 reprinted permission elsevier copyright 2002 american heart journal modified wilson cleary9 reprinted permission american medical association copyright 1995 american medical association rights reservedalthough performance tests help quantify physical functional status eg exercise treadmill testing aspects patient health status best captured patient selfreport hrql reflects individual views adapts symptom burden functional limitations prognosis well patients perceive overall health person differentially experiences degree symptoms functional limitations disease medical therapies impact wellbeing hrql accurately quantified patient selfreportan important corollary hrql cannot accurately inferred anatomic physiological tests myriad prior studies shown measures left ventricular ejection fraction btype natriuretic peptide extent coronary artery disease cad coronary angiography either weakly associated hrql71013 reflected experience clinicians 2 patients diagnosis test results eg heart failure left ventricular ejection fraction 030 may different symptom burdens functional capabilities quality lifeto date assessment patient health status clinical practice heterogeneous largely dependent communication clinician patient given episode care although given clinician may strive effectively assess health status patients standardized metrics monitor patient health status time compare among patients routinely implemented practice moreover time constraints may preclude effective assessment patient health status given episode care given patient may multiple care providers addition may significant discrepancies providerassessed patientreported health status14 ultimately patient gold standard symptom burden functional limitations hrql thus clear need use standardized tools assess patientreported health statusfortunately valid patientreported health status surveys basis science psychometrics developed including diseasespecific instruments patients cvd instruments quantify symptom burden functional status hrql standardized reproducible valid fashion patient health status surveys used clinical studies including randomized clinical trials quantify treatment benefits regard symptom improvement functional improvements improved hrql however patient health status surveys remain underused metrics clinical studies15in addition patient health status strong independent predictor health outcomes including mortality cardiovascular events hospitalization costs care1618 patient health status surveys measure health outcomes also help predict outcomes quantify patient risk beyond traditional risk variables patient demographics medical history physiological anatomic tests indeed patient health status surveys complementary history physical laboratory diagnostic tests patient health status may therefore important risk adjustment may useful targeting healthcare resources disease management largest health deficitsalthough goal many therapeutic interventions alleviate symptoms improve functional status optimize quality life patientreported health status measures used routinely clinical practice719 moreover patient health status data generally available inform public health cvd surveillance efforts20 hrql included measure cardiovascular health ahas strategic impact goals recognition fact cardiovascular health extends beyond measures disease prevalence risk factors include impact cvd patient functional status wellbeing1 however listed secondary metric cardiovascular health given challenges widespread measurement hrql availability hrql data future patient health status measure cardiovascular health beyond use research hinges degree becomes incorporated clinical practice disease surveillance efforts3 patient health status surveyspatientreported health status generally defined impact diseases medical treatments function wellbeing reported patient7 specifically stemming conceptual qualityoflife model proposed wilson cleary9 patient health status 3 principal components symptom burden functional status eg physical mental social hrql reflects individual person perceives functional limitations overall impact health wellbeing89 components patientreported cardiovascular health status displayed figureover past several decades using science psychometrics multiple standardized patient health status surveys developed key psychometric properties surveys include reliability responsiveness interpretability validity21 best health status surveys undergone reproducibility testing ensure survey results stable measure repeated patient health status changed sensitive clinical change ie survey scores change appropriately clinical status changes interpretable ie survey scored way quantify patient health status changes survey scores time also interpretableof note true criterion validity patientreported health status proxy metrics instead direct assessment patients perspective impact disease function hrql however standardized patient health status surveys demonstrated predictive correlative association metrics eg correlation patientreported physical functional limitations exercise treadmill testing part development result body scientific work easily administered standardized patient health status surveys available collect structured information patient cannot accurately quantified waytwo major types patient health status surveys general generic disease specific general health status surveys quantify overall functional status wellbeing ask symptoms functional limitations attributable particular disease perhaps bestknown example shortform 36 sf36 related shorter versions sf12 36 questions relate 8 health status scales vitality physical functioning bodily pain general health perceptions physical role functioning emotional role functioning social role functioning mental health 2 summary scores physical mental component summary scores22 another example national institutes healths patientreported outcomes measurement information system promis provides online general patient health status surveys quantify physical mental social wellbeing branching logic minimize number questions depending answers provided23 general surveys eq5d assess patient health utilities eg assigning number 01 personal value overall state health thus particularly useful estimation qualityadjusted lifeyears economic analyses24 general health status surveys particularly useful comparisons among populations eg comparing patients cvd healthy cohorts chronic diseases however general surveys quantify symptom burden eg angina functional limitations related cvd less sensitive clinical change time therapeutic intervention clinical interpretation difficult diseasespecific instrumentsbecause present scientific statement specifically cardiovascular health primary focus cvdspecific patient health status surveys diseasespecific patient health status surveys quantify symptom burden functional limitations hrql related specific condition cardiovascularspecific health status surveys exist patients cadangina heart failure atrial fibrillation stroke peripheral artery disease pad cad health status surveys used studies patients chronic stable cad undergoing coronary revascularization acute myocardial infarction mi heart failure health status surveys used studies outpatients chronic heart failure hospitalization heart failure among patients valve disease principal symptomatic manifestation similar chronic heart failure eg dyspnea padspecific surveys used patients claudication critical limb ischemia determine perceived changes communitybased walking symptoms physical emotional functioning quality life response pharmacological exercise revascularization interventionsexamples validated cvdspecific patient health status surveys include macnew heart disease health related quality life questionnaire seattle angina questionnaire saq patients cad2526 minnesota living heart failure questionnaire kansas city cardiomyopathy questionnaire kccq patients heart failure valve disease2728 atrial fibrillation effect quality life patients atrial fibrillation29 stroke impact scale strokespecific quality life scale stroke patients3031 peripheral artery questionnaire vascular quality life questionnaire patients pad3233table 2 lists characteristics currently available commonly used cvdspecific patient health status surveys cad atrial fibrillation heart failure padtable 2 characteristics currently available cardiovascular diseasespecific patient health status surveysinstrumentpopulation validated items overalldomainssubscales itemsscoringsummary scoresadditional language versionsprimary referencescoronary artery diseasequality life myocardial infarction qlmi2macnew questionnairecardiac rehabilitation patients myocardial infarction patients angina patients27physical limitations 14 emotional 14 social functioning 13both subscales summary score interpreted scores 1 7 lower scores better minimal significant change score 05 subdomain scores summary scorechinesedutchflemishgermanhebrewhungariannorwegianpersianportuguesespanishturkishvalenti etal34 qlmi2hfer et al25seattle angina questionnairepatients undergoing exercise treadmill testing patients undergoing coronary angioplasty initially stable coronary artery disease patients coronary artery disease patients19physical limitation 9 angina stability 1 angina frequency 2 treatment satisfaction 4 quality lifedisease perception 3both subscales summary score interpreted scores 0 100 higher scores bettersignificant change scores physical limitations change score 8 points angina frequency change score 20 points qualityoflife change score 16 points50 language translationsspertus etal26myocardial infarction dimensional assessment scale midasacute myocardial infarction patients35physical activity 12 insecurity 9 emotional reaction 4 dependency 3 diet 3 concerns medications 2 side effects 2subdomain scores interpreted scores 0 100 lower scores better summary scorechineseturkishthompson et al35cardiovascular limitations symptoms profile claspchronic stable angina patients37four symptom subscales angina 5 shortness breath 5 ankle swelling 3 tiredness 3 five functional limitation subscales mobility 4 social life leisure activities 3 activities within home 4 concerns 3 worries gender 3unknown range scoressymptoms subscales mild moderate severelimitations subscales limitation mild moderate severechineselewin et al36quality life indexcardiac version iv qlicabg patients patients undergoing ptca235 items satisfaction importance quality life aspectshealth functioning 15 socioeconomic 8 psychosocialspiritual 7 family 5subdomain scores summary score interpreted scores 0 30frenchhebrewitalianportugueserussianspanishthaiturkishferrans powers37atrial fibrillationafqolstable atrial fibrillation patients18psychological 7 physical 8 sexual activity 3subscale summary score interpreted scores 0 100 higher score better minimal significant change score12spanishbadia et al38arribas etal39atrial fibrillation effect qualityoflife afeqt questionnairepatients paroxysmal persistent longstanding persistent permanent atrial fibrillation42symptoms 5 social functioning 10 physical functioning 9 emotional functioning 7 treatment concerns 8 treatment satisfaction 3subscale summary score interpreted scores 0 100 higher scores better summary score excludes items treatment satisfaction change summary score 98 corresponds moderate effect sizefrenchgermanitalianspanishpolishczechchinesedutchkoreannorwegianswedishspertus etal29instrumentpopulation validated items overalldomainssubscales itemsscoringsummary scoresadditional language versionsprimary referencestoronto symptoms check list sclpatients persistent atrial fibrillation scheduled dc cardioversion6dyspnea 2 limitations daily life related atrial fibrillation 1 discomfort related atrial fibrillation 1 fatigue related atrial fibrillation 1 anxiety related atrial fibrillation 1itemlevel scores scale 010 overall score 060 lower score betterharden et al40heart failureminnesota living heart failure questionnaire mlhfqnyha class iii patients clinical trial pimobendan21physical 8 emotional 50105 best worst lower score better30 language translationsrector et al2741kansas city cardiomyopathy questionnaire kccqstable decompensated heart failure patients23physical limitation 6 symptoms 8 selfefficacy 2 social limitation 4 quality life 3overall summary score subscales scored 0100 higher score better50 different language translationsgreen et al28chronic heart failure questionnaire chqsymptomatic patients heart failure rct digoxin16dyspnea 5 fatigue 4 emotional 716122 worst best higher score betterchineseguyatt et al4243quality life questionnaire severe heart failure qlqshfpatients nyha class iiiii symptoms metoprolol dilated cardiomyopathy mdc trial26psychological 7 physical activity 7 life dissatisfaction 5 somatic symptoms 70130 lower score betternone identifiedwiklund et al4445peripheral artery diseaseperipheral artery questionnaire paqpad patients endovascular therapy exercise training20most symptomatic leg 1 physical limitations 6 symptom stability 1 symptoms 3 treatment satisfaction 3 quality life 3 social function 3subscale summary scores 0100 higher score betterclinically meaningful change8 pointsdutchspertus et al32smolderen et al46vascular quality life questionnaire vascuqolpatients symptomatic pad claudication ischemic rest pain tissue loss25pain 4 symptoms 4 activities 8 social wellbeing 2 emotional wellbeing 7subscale summary score range 17 higher score bettercanadian frenchdutchitalianmorgan et al33strokestroke impact scale 30patients mild moderately severe stroke598 domainsstrength 4 memory 7 emotions 9 communication 7 adliadl 10 mobility 10 hand function 4 participation 8 single item perceived recovery strokedomain scores range 0100 higher scores indicate better function four physical domain scores combined create composite physical domain scoregroup clinically important difference physical domains strength92 adliadl59 mobility45 hand function178 pointsitaliangermanduncan et al3047strokespecific quality life scalepatients ischemic stroke4912 domainsmobility 6 energy 3 upper extremity function 5 workproductivity 3 mood 5 selfcare 5 social roles 5 family roles 3 vision 3 language 5 thinking 3 personality 3domain scores range 15 higher score represents normal function group clinically important differences mobility selfcare upper extremity function domains 15 12 12 respectivelydanishspanishgermanwilliams et al31adl indicates activities daily living cabg coronary artery bypass graft surgery dc direct current iadl instrumental activities daily living nyha new york heart association pad peripheral artery disease ptca percutaneous transluminal coronary angioplasty rct randomized controlled trialin addition englishgiven focus present scientific statement listed surveys capture aspects 3 principal patient health status domains ie symptom burden functional status hrql table 2 however validated surveys capture single domains patient health status symptomspecific eg pain functionspecific eg physical functional status questionnaires wellknown examples latter include walking impairment questionnaire patients pad duke activity status index patients cad4849the cvdspecific health status surveys listed table 2 range 10 60 questions emphasize symptoms referable given disease eg angina patients cad physical functional limitations related symptoms questions wellbeingquality life include questions topics selfefficacy mental health statusanxiety treatment concerns satisfaction sexual functioning administration times generally range 5 15 minutes standard guidelines choosing one instruments another choice often driven primary condition interest eg heart failure may influenced factors length content individual surveys familiarity instrument often general diseasespecific health status surveys administered simultaneously studiesalthough surveys designed patient selfadministration paper studies using surveys also used modalities interview administration eg nurse interview patient phone webbased administration general evidence supports differential modes administration lead systematic differences bias results50 however surveys validated written 2 issues must considered first survey administered eg read aloud patient important questions answer choices read precisely written second surveys listed table 2 developed validated use formal psychometric testing perturbation content potentially threatens underlying validity reliability instruments administered scored way validated generally acceptable alter content order existing standardized surveys without psychometric clinical validation work support alterations understanding addressing potential language cultural health literacy