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    Mea suring Hea lthy Da ysPopulation Assessment of Health-Related Quality of Life

    U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

    Centers for Disease Control and Prevention

    National Center for Chronic Disease Prevention and Health Promotion

    Division of Adult and Community Health

    November 2000

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    Mea suring Hea lthy Da ysPopulation Assessment of Health-Related Quality of Life

    U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

    Centers for Disease Control and Prevention

    National Center for Chronic Disease Prevention and Health Promotion

    Division of Adult and Community Health

    Atlanta, Georgia

    November 2000

    Suggested citation: Centers for Disease Control and Prevention. Measuring Healthy Days. Atlanta, Georgia:CDC, November 2000.

    For additional information: For general information about the Healthy Days measures, contact: Health Care andAging Studies Branch, Mailstop K-45, DACH, NCCDPHP, CDC, 4770 Buford Highway NE, Atlanta, Georgia

    30341 (Tel: 770-488-5464). For information about public-domain Behavioral Risk Factor Surveillance System(BRFSS) methods or data, see:http://www.cdc.gov/nccdphp/brfss/ or contact your State BRFSS Coordinator(contact information available on this website).

    Acknowledgments: Virginia Ross Taylor (writer-editor), Kerstin Weis (manuscript design), Behavioral RiskFactor Surveil lance System State Coordinators, CDC Health Care and Aging Studies Branch staff , reviewers of thedraft manuscript who provided comments and corrections, and developers, researchers, and users of the HealthyDays measures, who provided the expert guidance and technical material on which this report was based. Thecover design has been adapted from theMona Lisa by Leonardo da Vinci, which is in the permanent collectionof the Musee du Louvre in Paris, France.

    M e a s u r in g H e a l t h y D a y s 1

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    Mea suring Hea lthy Da ys

    EXECUTIVE SUMMARY. . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

    INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    Why quality of life? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    Wha t is q ua lity of life? . . . . . . . . . . . . . . . . . . . . . . . . . . 5

    What is health-related quality of life? . . . . . . . . . . . . . . . 6

    Why is it important to track HRQOL? . . . . . . . . . . . . . . . . 6

    How can HRQOL be m ea sured? . . . . . . . . . . . . . . . . . . . . 7

    HEALTHY DAYS METHODS. . . . . . . . . . . . . . . . . . . . . . . . .

    8

    How is the summary index of

    unhealthy d ays calcula t ed? . . . . . . . . . . . . . . . . . . . . . . . 8

    Why collect d ata ab out health pe rcept ions? . . . . . . . . . . .9

    What is the BRFSS? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

    What is the a dvanta ge o f having core

    HRQOL que stions o n t he BRFSS?. . . . . . . . . . . . . . . . . . . 10

    Why ask How m any da ys . . . w hen ot her quest ions

    like ra t ing your o verall health a re easier to answ er? . . . .10

    How can you mea sure HRQOL w ith only fo ur que stions? .10

    Why are most of the mea sures oriented tow ard

    the neg at ive side of health?. . . . . . . . . . . . . . . . . . . . . .

    11How do the Healthy Days measures dif fer

    f ro m QALYs, DALYs, a nd YHLs? . . . . . . . . . . . . . . . . . . . 12

    FINDINGS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

    What have been some of t he f indings from the

    Healthy Days core questions? (nationwide,

    sta t e compa risons , seasona l pat t erns, a nd t ime trend s) . .12

    VALIDATION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

    Do t hese q uestions accurately me asure HRQOL?. . . . . . .15

    What challeng es in mea surement ha ve been ident ified?. .18

    What is being done to address problems in accuracy?. . .19

    PRACTICAL APPLICATIONS. . . . . . . . . . . . . . . . . . . . . . . . 20

    Wha t a re som e of the cross-cultura l uses of t he

    Healthy Da ys measures? . . . . . . . . . . . . . . . . . . . . . . . . . 20

    How are the Healthy Days mea sures useful a t the

    state an d local levels? . . . . . . . . . . . . . . . . . . . . . . . . . . 20

    How are t he HRQOL mea sures being used to

    ident ify and ad dress the nee ds of specia l populat ions? . .21

    2 M e a s u r in g H e a l t h y D a y s

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    Measuring Healthy Days

    Exe

    cutive

    Summ

    ary EXECUTIVE SUMMARY World Health Organizations defi

    nition of health. The demonstratedvalue of these measures and the

    T

    his technical report,Measur ing Healthy Days,

    describes the origins, validi-ty, and value of a set of survey measures developed by the Centers forDisease Control and Prevention(CDC) and its partners for use intracking population health statusand health-related quality of life(HRQOL) in states and communities. The first four of these measures pertain to generalself-rated health and recent days of physical health,mental health, and activity limitation. These measureshave been part of the full sample Behavioral Risk FactorSurveillance System (BRFSS) core since 1993 and were

    added, beginning in 2000, to the examination compo

    continuous accumulation of public

    domain data have resulted in support from the CDC Disability,Womens Health, and ArthritisPrograms. The HRQOL measuresand data have also been used forresearch or program planning by

    Hea lth is a sta te o f complete physica l,

    ment a l, a nd socia l w ell-being no t merely

    the a bsence o f disea se, o r infirmity.

    -World Hea lth Org a niza tion , 1948

    nent of the National Health and Nutri tion ExaminationSurvey (NHANES). An additional five measures ofactivity limitation and five questions on recent days ofpain, depression, anxiety, sleeplessness, and vitality constitute an optional quality-of-life module added to theBRFSS in 1995.

    The primary target audiences for this report are public health professionals with a current stake or potentialinterest in HRQOL measurement. The report identifiesthe policy origins of the Healthy Days measures, discusses how HRQOL differs from other health and socialconstructs, and summarizes several studies designed totest the reliability, validity, and responsiveness of the

    measures. It also describes surveillance findings to dateand provides methods and population reference datafrom 199397 to assist states and others in the appropriate use and interpretation of their own Healthy Daysdata.

    In recent years, several organizations have foundthese Healthy Days measures useful at the national levelfor: 1) identifying health disparities, 2) tracking population trends, and 3) building broad coalitions around ameasure of population health compatible with the

    the CDC Cardiovascular Health,Nutr it ion and Physical Activity, and

    HIV/AIDS Programs as well as by the Public HealthFoundation, the Foundation for Accountability, theAmerican Cancer Society, and several other governmentand academic programs.

    One of the greatest anticipated uses of the BRFSS

    Healthy Days measures and data is at the state and locallevels in support of the two major goalsof Healthy People 2010: Improving theQuali ty and Years of Healthy Li fe andEliminating Health D isparit ies. HealthyPeople 2010 identifies the BRFSS as akey source for tracking several HRQOLmeasures. As knowledge builds aboutthe value of HRQOL surveillance andhow to use it, these validated measuresand accumulating data give states andcommunities a unique resource for

    tracking adult physical and mental health over time,identifying unmet health needs, and guiding broadcommunity efforts to improve population health.

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    INTRODUCTION

    This report is designed for use by public healthprofessionals who are involved or interested in

    health- related quality of life (HRQOL) surveillance or measurement. The report identifies the policyand conceptual origins of a set of Healthy Days HRQOLmeasures that were developed for use as public healthoutcome measures and summarizes the results of studies designed to test the accuracy and consistency of thesemeasures. It also describes surveillance findings to dateand provides analytical methods and population reference data from 19931997 to assist states and others inthe appropriate use and interpretation of the Healthy Days measures and data.

    This report is organized

    This reframed definition of health also consideredquality of life. As medical and public health advances ledto cures and better treatments of existing diseases anddelayed mortality, it seemed logical that those whomeasure health outcomes would begin to assess the populations health not only on the basis of saving lives, butalso in terms of improving them. The public, too,became aware that an impor tant dimension was missingfrom the traditional health paradigm: the dimension ofthe quality of a persons life. Although biochemicalmeasures and morbidity data may indicate the need fortreatment, they do not always correlate with the waypeople feel (Gi ll 1994, NIH 1993).

    around answers to questions peo- The w eb o f o ur life is of a ming ledple commonly ask about HRQOLand its measurement. yarng oo d a nd ill to g ether.

    Why quality of life? -Sha kespe a re, Alls Well Tha t Ends Well

    Although the World HealthOrganization (WHO)defined health very broad

    ly as long as a half century ago, health in the U.S. has traditionally been measured narrowly and in the negative.What is measured is ill health in its severe manifesta

    tions, those which are verifiable through physical examination and other objective procedures or tests. Thesemeasures have generally been done at the individuallevel, at clinics and hospitals.

    Such traditional measures of morbidity and mortality provide information about the lowest levels ofhealth, but they reveal little about other importantaspects of an individuals or a communitys level ofhealth, including dysfunction and disability associatedwith diseases, injuries, and other health problems.Developing a composite index of overall health by combining data about the presence or absence of variousdiseases and conditions is problematic.

    In the 1980s, the search began for additional measures to supplement traditional measures of morbidityand mortality. Health status is now seen by the publichealth community as a multidimensional construct(Patr ick 1993). Some of the variables generally considered to be in the domain of health include prematuremortality and life expectancy, various symptoms andphysiologic states, physical functions, emotional andcognitive functions, and perceptions about present andfuture health.

    What is quality of life?

    Quality of life (QOL) is a popular term that conveys an overall sense of well-being, includingaspects of happiness and satisfaction with life as

    a whole. It is broad and subjective rather than specificand objective. What makes it so challenging to measure isthat, although the term quali ty of l ife has meaning fornearly everyone and every academic discipline, what itactually means is somewhat different for each individualand group. How do you reach accord about a measure forquality of life?Perhaps the strongest area of a consensusis that quality of life is extraordinarily broad and conceptually complex, yet measures are most meaningfulwhen they measure key concepts in a logical way and areas precise as possible.

    Although health is an important domain of overallquality of life, there are other domains as wellforinstance, jobs, housing, schools, and the neighborhood.Aspects of culture, values, and spirituality are also keyaspects of overall quality of life that add to the complexity of its measurement. Nevertheless, researchers in thefields of psychology and sociology have developed usefultechniques that have helped to conceptualize and measure these multiple domains and how they relate to eachother.

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    Introduction What is health-related quality of life?

    The concept of health-related quality of life(HRQOL) and its determinants have evolved

    since the 1980s to encompass those aspects ofoverall quality of life that can be clearly shown to affecthealtheither physical or mental (M cHorney 1999). Onthe individual level, this includes physical and mentalhealth perceptions and their correlates, including healthrisks and conditions, functional status, social support,and socioeconomic status. However, some aspects ofhealth do not appear to have a direct bearing on qualityof life at the time of assessment. These include an illness,exposure, or genetic predisposition that is unknown tothe individual without symptoms.

    On the community level, HRQOL includesresources, conditions, pol icies, and practices that influence a populations health perceptions and functionalstatus. The construct of HRQOL broadens the traditional notion of health to meet the expressed physical andmental health needs of the population. It also enableshealth agencies to legitimately address broader areas ofhealthy public policy around a common theme in collaboration with a wider circle of health partners, including social service agencies, community planners, and

    commercial groups (Stokols 1992).HRQOL is rapidly gaining acceptance as a measura

    ble outcome. HRQOL questions about perceived physicaland mental health and function have become an impor

    tant component of health surveillance and are generallyconsidered valid indicators of service needs and intervention outcomes. Self-assessed health status has proveda more powerful predictor of mortality and morbiditythan many objective measures of health (I dler 1997).HRQOL measures make it possible to demonstrate scientifically the impact of quality of life on health, goingwell beyond the old paradigm that was limited to whatcan be seen under a microscope.

    Why is it important to track HRQOL?

    Researchers and practi tioners in fields outside public health are actively engaged in quality of lifemeasurement, especially those from sociology,

    psychology, social work, aging, disability, environmentalsustainability, economics, marketing, and urban/ruralplanning. Moreover, business and community leaders,the media, and the public are interested in communityquality of life and appear willing to grant health agencies

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    CDC Mission

    to promote hea lth and qual i ty of l i fe by preventing,a nd con trolling disea se, injury and disa bility

    a major responsibility for measuring and helping to sus

    tain it. Focusing on HRQOL as a national health standard can thereby bridge artificial boundaries betweendisciplines and between social, mental, and medical services(Pope 1991).

    Several recent federal policy changes underscore theneed for measuring HRQOL to supplement public

    healths traditional measures of morbidity and mortality.Healthy People 2000 and 2010 both identified quality oflife improvement as a central public health goal. In addition, increased awareness of the burden of chronic healthconditions and the links between quality of life and prevention led to a revision of the mission of the Centers forDisease Control and Prevention (CDC). Further, theCDC Chronic Disease, Disability, and Womens HealthPrograms have evolved to target quality of life as animportant health outcome.

    HRQOL is related to both self-reported chronic diseases (diabetes, breast cancer, arthritis, and hypertension),and their risk factors (body mass index, physical inactivity, and smoking status). Measuring HRQOL can helpdetermine the burden of preventable disease, injuries, anddisabilities, and it can provide valuable new insights intothe relationships between HRQOL and risk factors.

    Measuring HRQOL will help monitor progress inachieving the nations health objectives. Analysis ofHRQOL surveillance data can identify subgroups withrelatively poor perceived health andhelp to guide interventions to improve

    How can HRQOL be measured?

    Several measures have been used to assess HRQOLand related concepts of functional status. Amongthem are the Medical Outcomes Study Short Forms

    (SF-12 and SF-36), the Sickness Impact Profile, and theQuality of Well-Being Scale. The SF-36 measures are nowused by the Health Care Financing Administration(HCFA) and the National Committee for QualityAssurances Health Plan Employer Data and Information

    their situations and avert more serious Healthy People 2010 Goalsconsequences. Interpretation and publication of these data can garner sup- Increa se th e q ua lity a nd years of hea lthy life

    port for health policies and legislation,help to allocate resources based on Elimina te hea lth d ispa ritiesunmet needs, guide the development ofstrategic plans, and monitor the effectiveness of broad community interventions. HRQOLassessment is a particularly important public health toolfor the elderly in an era when life expectancy is increasing, with the goal of improving the extra years in spite ofthe cumulative health effects associated with normalaging and pathological disease processes.

    Set (HEDIS 3.0) to help evaluate the quality of care inmanaged care plans and other health care applications.While these measures have been widely used and extensively validated in clinical sett ings and special populationstudies, their length often makes them impractical to usein population surveillance.

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    Health

    yDaysM

    eth

    ods HEALTHY DAYS METHODS

    To meet the need for a standard set of validHRQOL measures that could be used in ournational health surveillance system, a collabora

    tive program was initiated in 1989 by the Division ofAdult and Community Health (DACH) in the CDCsNational Center for Chronic Disease Prevention andHealth Promotion (NCCDPHP). This HRQOL surveillance program received its initial direction and guidancefrom several planning meetings that included representatives of state and local chronic disease and health promotion programs, relevant academic disciplines, andsurvey researchers (CDC 1993-1, CDC 1993-2).

    During the next several years, the Division workedwith CDCs Disability Prevention Program, Womens

    Health Program, National Center for Health StatisticsQuestionnaire Development Research Lab, andEpidemiology Program Office to develop and validate acompact set of measures that states and communitiescould use to measure HRQOL (Hennessy 1994). Theseare the Healthy Days measures, an integrated set of

    Core Healthy Days Measures

    1. Would you say t hat in general your

    health is excel lent , very go od, go od,

    fair, or poor?

    2. Now thinking about your physical

    health, w hich includes ph ysical illne ss

    and injury, for how man y da ys during

    the p a st 30 da ys w as your physical

    hea lth no t g ood?

    3. Now thinking about your mental

    health, w hich includ es stre ss, dep res

    sion, and problems w ith emot ions, for

    how man y days during the pa st 30

    days wa s your mental heal th not

    good?

    4. During the pa st 30 da ys, for ab out

    how man y da ys did poo r physical or

    mental heal th keep you from doing

    your usual activities, such a s self-ca re,

    w ork, or recreat ion?

    De f i n i t i o n

    Health-related quality of life

    An individua ls or grou ps perceived

    physica l a nd m enta l hea lth over t ime

    broad questions about recent perceived health statusand activi ty limitation. On the basis of a synthesis of thescientific literature and advice from its public healthpartners, the CDC has defined HRQOL as an individuals or groups perceived physical and mental healthover t ime.

    The core Healthy Days measures assess a persons perceived sense of well-being through four questions on: 1)self-rated health, 2) number of recent days when physicalhealth was not good, 3) number of recent days whenmental health was not good, and 4) number of recentactivity limitation days because of poor physical or mental health (see BRFSS Health Status questions @http://www.cdc.gov/nccdphp/brfss/). For the Healthy Daysmeasures,recent is defined as during the past 30 days.

    The first item measures overall self-rated health on ascale from poor through excellent. Question #2 on physical health is a global measure of recent physical symptoms, and question #3 is a global measure of recent

    mental and emotional distress. Mental and physicalhealth are probed in separate questions in order to linkquality of life measurement to the medical, mentalhealth, and behavioral medicine fields. Question #4about recent activity limitation is a global indicator ofperceived disabil ity as well as an indicator of productivity and human capital.

    How is the summary index of unhealthy days

    calculated?

    Unhealthy days are an estimate of the overallnumber of days during the previous 30 dayswhen the respondent felt that either his or her

    physical or mental health was not good. To obtain anestimate of a persons overall unhealthy days, responsesto questions #2 and #3 are added together, with a logicalmaximum of 30 unhealthy days. For example, a personwho reports 4 physically unhealthy days and 2 mentallyunhealthy days is assigned a value of 6 unhealthy daysand someone who reports 30 physically unhealthy days

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    and 30 mentally unhealthy days is plementary form of unhealthy days.assigned the maximum of 30 Healthy days estimates the numberunhealthy days. of recent days when a persons

    This method for estimating physical and mental health was

    unhealthy days is supported by the good (or better) and is calculatedactual pattern of survey responses by subt racting the number ofto the two individual questions. unhealthy days from 30 daysThe large majority of individuals (Hennessy 1994). These summaryreport substantially different num measures are designed to assessbers of physically unhealthy days peoples overall perceptions aboutversus mentally unhealthy days, their health over time and to identie.g., in the 1998 BRFSS, 67.8% of fy groups in the general adult pop-the 68,619 adults who reported ulation with potentially unmet per-any unhealthy days, reported only ceived health needs.physically unhealthy days or onlymentally unhealthy days, whileonly 4.5% reported equal numbers Why collect data about healthfor each measure. Additional evi perceptions?dence indicates that other reported

    y

    y

    days do not overlap, e.g., 10.5% ofthe 256 persons who reported both15 physically unhealthy days and 15 mentally unhealthydays also reported more than 15 days of recent activitylimitation due to poor physical or mental health. Analternative calculation method that assumed a maximumamount of overlap in the two responses (e.g., a personwho reports 4 physically unhealthy days and 2 mentallyunhealthy days is assigned a value of 4 unhealthy days)was not as plausible from the overall response pattern.

    Furthermore, this latter method resulted in only a 0.4 dayoverall mean difference in unhealthy dayscompared withthe recommended method and showed similar demographic patterns and subgroup differences with aggregated population data.

    Unhealthy days provides asimple, yet comprehensive,HRQOL summary measure that isa valid and responsive index ofperceived physical and mentalhealth over time (Newschaffer1998, Moum 1999) and that isgenerally acceptable to public

    health and social scienceresearchers, policy makers, andpractitioners. Healthy daysaterm coined by columnist Jane E.Brody of the New York Times inan article describing the first published comparisons of stateHRQOL (NYT, March 29,1995)was formerly called goodhealth days and is a positive com

    Peoples self-perceptions abouttheir health are very important in the present as health

    outcomes and can serve as proxy measures for the perceived symptom burden of both acute and chronichealth conditions. Also, because people generally seekhealth care only when they feel unhealthy, self-perceptions are also predictive of the future burden on thehealth care delivery system (Idler 1997, Pij ls 1993). TheHealthy Days measures, then, work as both outcome

    measures and predictors. The core set of Healthy Daysmeasures has been used continuously by all states as thefirst four questions of the Behavioral Risk FactorSurveillance System (BRFSS) since 1993.

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    Health

    yDaysM

    eth

    ods What is the BRFSS?

    The BRFSS is a continuous, state-based, randomtelephone survey of community-dwelling U.S.

    adults aged 18 and older (see BRFSS website athttp://www.cdc.gov/nccdphp/brfss/). It is the largest, continuously conducted telephone health survey in theworld. It helps agencies monitor modifiable risk factorsfor chronic diseases and other leading causes of death. All50 states and the District of Columbia participate in theBRFSS, and many specialized national, state, and localsurveys use both i ts methods and its measures. Therefore,the BRFSS is an important public domain resource forcontinuous, comparable data about population health.

    What is the advantage of having core HRQOL

    questions on the BRFSS?

    The BRFSS is the primary source of state-basedinformation on risk behaviors among adult populations. Data collection is flexible, timely, and

    ongoing. CDC edits and processes data from each statesmonthly interviews, then returns prevalence informationand selected reports to all states for their use, allowing forstate-to-state and within-state comparisons. The BRFSSgathers information on age, gender, racial and ethnicbackground, education, marital and employment status,the county of residence, and other demographic factorsso that estimates can be made for specific population

    groups. These data can be used as a benchmark to determine how perceived health and activity limitations varyover time.

    More than 900,000 adults have responded to the coreHRQOL questions as part of the BRFSS since their introduction in 1993. Adding the core HRQOL question to the

    BRFSS has also stimulated interest in HRQOL as a public health outcome. Because the BRFSS is the survey thatmost closely tracks geographical and temporal differences, using the core questions on other special popula

    tion studies and assessments permits comparability withgeneral population data. For comparabili ty with national surveys, the core Healthy Days questions were added tothe examination component of the National Health andExamination Survey (NHANES) beginning in 2000.

    The BRFSS was chosen as a vehicle for questions onHRQOL because of its broad coverage that permitsstate- and locality-based estimates and its high visibilityas a surveillance mechanism within the public healthcommunity. The new annual survey format forNHANES offers additional opportunities for both surveillance and prevention research. Moreover, includingthe core questions in existing periodic surveys helps

    minimize the costs of HRQOL surveillance.

    Why ask How many days . . . when other

    questions like rating your overall health are easier

    to answer?

    First, there is a policy value of estimating the burden of disease or disability in days, months, oryears because it provides concrete measures that

    can be understood by legislators and policy makers andcan be used in prevention effectiveness studies to assesscost-effectiveness of alternative interventions. As they

    go about and plan their lives, people tend to think interms of monthly intervals. High BRFSS response ratesfor these questions show that most adults are able toestimate the number of dayseven if they are makingonly rough estimates, e.g., in 1998 there was a 98.6%response rate for recent physical health days, 98.5% forrecent mental health days, and 99.3% for recent activitylimitation days. In addition, quantifying estimates interms of days in the most recent month avoids the needto use complex weights in aggregating and comparingdata that are based on mul tiple choice questions. Mostimportant, HRQOL is inherently a time-related phenomenon that is best measured over, or with reference

    to, a specified period of time.

    How can you measure HRQOL with only fourquestions?

    Although the four basic questions may tell howpopulation subgroups rate next to the generalpopulation, they do not provide enough infor

    mation to identify specific public health interventionsbecause they only track general health needs.

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    Therefore, CDC and several state and communityhealth agencies began in January 1995 to collect dataon an additional 10-item set of health perception andactivity limitation questions. The additional set of

    10 questions comprises an optional quality-of-lifemodule that states and communities can choose toinclude in their surveys (see Quality of Life OptionalModule questions on the BRFSS questionnaire athttp://www.cdc.gov/nccdphp/brfss/). With support fromCDCs Arthritis Program and Disability and HealthProgram, about half of all states were using the additional 10-question set in 2000.

    These questions include measures for pain, depression, anxiety, sleeplessness, and vitality. Data in responseto these measures provide more information on specificpotentially remediable causes of poor HRQOL indicatedby the first four more global measures. The expanded

    HRQOL-14 questions measure the burden of bothshort-term and persistent physical and mental healthproblems in a manner that disease-specific health planners and legislators can use to allocate resources amongcompeting health programs and to guide health policyby tracking important short- and long-term effects ofhealth programs.

    The expanded set of questions will make it possibleto compare the perceived burdens of diseases and conditions as well as to differentiate health benefits thatalternative interventions yield. Use of the expanded setof questions may be one of the most cost-effective ways

    Additional Healthy Days Measures

    1. an y a ctivity

    limitation

    if yes

    of assessing the population need or susceptibility forhealth services, disease incidence, and death. HRQOLmay be a major determinant of many behavioral risksand may be easier to directly modify than the risks

    themselves. For example, treatment of anxiety anddepression among adults who smoke or are overweightmay reduce their risk of disease and death and leadthem to make and maintain healthy behavioral changes.

    Why are most of the measures oriented toward thenegative side of health?

    Unlike disease or death, HRQOL is a health concept that covers the ful l spectrum of health andis not inherently positive or negative in its ori

    entation. In representative communi ty populations

    most persons tend be at the healthy end of the spec-trumfor example, 85.6% of BRFSS adult respondentsreported that their overall health was good to excellent(Table 1). However, to guide public health and socialpolicy, it was important to have HRQOL measures thatbest identify and distinguish those at the lower end ofthe health spectrum who have health conditions thatcould most benefit from healthier environments, earlydiagnosis, and appropriate treatment. Therefore, moremeasures were developed that asked about negativeHRQOL qualities, such as pain, depression, and activitylimitation than about positive qualities such as feelingvery healthy and full of energy. Also, it was clear fromcognitive studies and field tests of the Healthy Daysmeasures thatbecause most respondents had fewerrecent days affected by these negative qualitiesit waseasier for them to estimate the number of unhealthy versus healthy days.

    y

    y

    2. ma jor cause

    3. how long

    4. routine care

    5. persona l care

    6. pain days

    7. depression days

    8. an xiety d ays

    9. sleepless days

    10. vitality days

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    Hea

    lthyDaysM

    ethods/Findings How do the Healthy Days measures differ from

    QALYs, DALYs, and YHLs?

    Quality-adjusted life years (QALYs) are esti

    mates of person-years lived at particular levelsof health. They are mostly used in cost-effec

    tiveness analysis and clinical trials involving healthconditions that consider the quality as well as thelength of life. Quality is typically measured on a scaleof zero (death) to 1.0 (perfect health) by assigningvarious weights to potential health states. There is alsoa group of somewhat related measures, includingDisability-Adjusted Life Years (DALYs) and Years ofHealthy Life (YHL), that adjust life expectancy estimates with weighted estimates of health and function(Murray 1998, Erickson 1995). On a population level,these latter types of estimates are most useful for guid

    ing health policy and for modeling what we know aboutdeath, disease, and their burden, especially at thenational and multi -national level.

    In contrast, the Healthy Days measures are directestimates of a populations health over time derivedfrom asking a representative sample of people whatproportion of their recent days were spent at particularlevels of health. Although they could potentially be usedfor estimating a populations healthy years of life andhealth-adjusted life expectancy, they were specificallydesigned as HRQOL surveillance measures capable ofidentifying disparities and trends and evaluatingchanges based on broad population interventions.Because they work well at the community and small-group level and also reflect population preferences forquality as well as length of life, the Healthy Days measures complement the other more complex and comprehensive population health measures.

    FINDINGS

    What have been some of the findings from theHealthy Days core questions?

    Na t i onw ide

    So far, adult survey respondents have said they have anaverage of 24.7 healthy days (or 5.3 unhealthy days) amonth, which means that 82.3% of all adult days arereported as healthy (Table 1). Although healthy daysdeclined only modestly with increasing age, an interesting finding was that young adults reported consistentlyworse mental health versus the oldest age groups,whereas older adults reported considerably more physical health problems than younger adults.

    Acquiring representative data about a populationcan help identify significant health differences amongsubgroups. For example, the highest average number ofhealthy days was reported by college graduates, AsianAmericans (English-speaking), and persons with annualhousehold incomes above $50,000 (CDC 1994). Theleast mean number of healthy dayswas reported in people who were unemployed, separated, aged 75 years orolder, or with less than a high school education. Fewerhealthy days were also reported by those smoking cigarettes or having a chronic health condition tracked bythe BRFSS (i.e., high blood pressure, diabetes, or breastcancer) (Table 1).

    Nearly one third of Americans say they suffer fromsome form of mental or emotional health problem everymonthincluding 11 percent who said their mentalhealth was not good more than seven days a month.Women had more poor mental health days than men(Borawski 1998). Younger Americans, aged 18 to 24years, suffered the most poor mental health days of alladult age groups. The lowest average was for people overage 65 years, with 1.9 poor mental health days a month.The unemployed also had a high average of poor mentalhealth days, at 5.2 days, but people unable to workbecause of disabilities fared worse at 8.9 poor mentalhealth days a month. People without health coveragewere considerably more likely to suffer poor mentalhealth days a month than people with health coverage(4.2 versus 2.6 days a month).

    Several factors seem to predict frequent mental distress, which is defined as 14 or more days during theprevious 30 days when mental health was not good.These factors include being unable to work, being previously married but now separated, having an annualhousehold income of less than $15,000, having less than

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    g

    Mean number of healthy days among adults with less than a high school education,*

    by stateUnited States, Behavioral Risk Factor Surveillance System, 1993-1996

    *Age -ad justed t o t he 1990 U.S. populat ion a ge d 18 years.

    a high school education, and being an American Indianor Alaska Native. Levels of stress and mental distress are

    predictive of medical diseases and health services utilization, and data based on the Healthy Days questionsallow examination of the reciprocal influences of bodyand mind.

    These data have also shown how reported health differs by place of residenceby state or by proximity to anurban center (CDC 1995). A benefi t of tracing perceivedhealth status over time is that it allows study of seasonalpatterns and the effects of health-related events overtime.

    Stat e com pari son s

    Comparisons of Healthy Days data at the state level and

    among socioeconomic and demographic subgroups havehelped to identify potentially remediable geographic anddemographic disparities in health status. After adjustingfor age differences, one such comparison found HRQOLdifferences among states for adults without a high-schooldegree, but more importantly found notable HRQOL differenceswithin each state (e.g., people with less educationtypically had lower HRQOL than those with more education) (CDC 1998-2).

    Percentage of adults reporting frequentmental distress (FMD) by selected

    sociodemographic group, 1997 BRFSS

    Men 7.3

    Women 10.5

    Whites 8.7

    African Amer. 10.2

    Asian/Pac. Is. 6.9

    Amer. Ind/Al. Natives 15.0

    Hispanic 11.0

    < H.S. Education 13.3

    H.S. Graduates 9.4

    College Graduates 5.8

    Health Plan = Yes 8.2

    Health Plan = No 13.7

    Disabled = No 6.0

    Disabled = Yes 20.1

    Frequent Mental Distress = mental health was not good for14 or more days in the past 30 daysSee also: Centers for Disease Control and Prevention.Self-Reported Frequent Mental Distress Among AdultsUnited States, 1993-1996. MMWR, 1998; 47:325-31 @http://www.cdc.gov/epo/mmwr/mmwr.html

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    Findings Season al p at t erns

    During the first 72 months of data collection with thefour core Healthy Days questions, a clear seasonal pattern was observed for each of the three days in the past30 days measures. This was most evident in theunhealthy dayssummary index.

    When the 72 months of data were combined andaggregated by calendar quarter, a striking 10% difference was noted between the winter months of January,February, and March, and the summer months of July,August, and September.

    Tim e trend s

    During the fi rst six years of data collection, for the period 19931998, several trends have been noted at boththe nati onal and state levels with the four Healthy Daysmeasures. The most striking nationwide trend has beena significant increase in Frequent Mental Distress(FMD) reported by women both younger (aged

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    VALIDATION

    Do these questions accurately measure HRQOL?

    Specifying HRQOL represents a unique effort on thepart of national policy makers to formally recognize quality of life as an important component of

    health. However, establishing valid and reliable measuresof a subjective self-report is challenging. Validity is thedegree to which a set of questions measures what it issupposed to measure. Validity can be assessed in severalways. Construct validi ty is the ability of the question tocorrelate with other measures that it should correlatewith. Criteri on validity compares the performance of ameasure with some other measure of the conditionunder studyideally a gold standard accepted in thefield. Concurrent cri teri on validity means the measures

    being evaluated are correlated with an established criterion measure, both of which are available at the sametime. Predicti ve cri terion validi ty refers to the usefulnessof the measure in predicting future health-related eventsand states (Streiner 1995).

    Validation has been identified as an essential prerequisite for a useful set of measures by leaders in both ofthe major international quality of life research societies:ISQOLS, the professional society that concentrates ongeneral QOL studies, and ISOQOL, the organizationdedicated to HRQOL research. Therefore, the CDCHRQOL measurement program has concentrated its initial effor ts on validation.

    Const ruc t val id i t y

    HRQOL, though fundamentally subjective, can be validated by statistically correlating self-reported survey datawith other more objective or established health outcomes and measurements. Some studies have examinedhow the Healthy Days HRQOL measures compare withother established measures like the Medical OutcomesStudy Short Form 36 (Newschaffer 1998, Andresen 19991). The SF-36, which is widely used in clinical studies ofHRQOL, was developed by the Rand Corporation dur ing

    the 1980s to measure the functional status and perceivedwell-being of representative U.S. patient populations.Analyses of the four core questions in representative surveys of adults found that the Healthy Days measures areinternally consistent and that they identify known or suspected population groups with unmet health-relatedneeds, including persons with reported chronic healthconditions, disabilities, and low socioeconomic status(D iwan 1995, Nanda 1998, Andresen 1999-3, Moriarty

    1999-2).

    Important HRQOL Validation issues

    Can HRQOL be clea rly defined ?

    Can HRQOL be a ccurat ely mea sured by

    survey?

    Will people a nswe r?

    Will their responses make sense?

    Are responses merely persona lity-ba sed?

    Do inte rview ers influen ce respon ses?

    Are responses consistent w ith ot her

    accepted data?

    Wha t d o results mea n in practical policy

    te rms (i.e., w hy is HRQOL mea suremen timportant)?

    Validation of BRFSS HRQOL Measures

    in a Statewide Sample

    St. Louis University School of Public Health

    C. Newschaffer, J. Jackson-Thompson, M. Counte

    Key HRQOL-14 Findings: N=588

    1. Good construct validity in a s ta tew ide

    adul t popula t i on

    demo gra phy &socioeconomic sta tus

    report ed chron ic diseases

    depression-screen positive

    2. Acceptable correlation w ith rela t ed

    SF-36 sca les

    depression .55

    pain .56vitality .50

    3. BRFSS items explain most variation in

    SF-36 summa ry score s

    4 Qs -- >59% of PCS (ph ysica l)

    3 Qs -- >64% of MCS (me nt a l)

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    Validation Concurrent val id i t y

    Several validation studies are being conducted to assessthe set of questions. A validation study performed by theSt. Louis University Prevention Research Center and theMissouri Department of Health featured a simultaneouscomparison of the 14 HRQOL questions on the BRFSSand the SF-36 in a statewide general population(Newschaffer 1998). Results for both sets of measuresvaried in similar fashion over sample characteristics.The researchers found that the HRQOL-14 has goodconstruct validity and should be considered for bothsurveillance and research applications. In addition, theydetermined that the HRQOL-14 has acceptable criterionand known-groups validity. In this study, the healthydays summary measure was found to be the most validmeasure of a quality-of-life deficit in a mixed popula

    tion with concurrent physical and mental health problems.

    The unhealthy days measure also shows good concurrent validity when compared with the categoricalresponses of the self-rated health measure for all adultsand for geographic and demographic subgroups. Whendata are adjusted for age, there is a tenfold difference inunhealthy days between adults reporting excellent versus poor general health (Table 1). This comparison alsoillustrates the value of using a continuous measure suchasunhealthy daysby clearly showing much larger differences in perceived mental and physical health at thepoor end versus the excellent end of the categorical

    self- rated health measure. Further, it shows that some ofthose who say their health is excellent still report someunhealthy days and those who report poor health alsoreport some healthy days.

    The unhealthy days measure also was found to bedirectly related to a global life satisfaction questionafrequently assessed construct in studies of overall (not

    just health-related) quali ty of li fe. This relationshipalthough not as strong as in the previous comparisonwith general self-rated healthnevertheless shows thatHRQOL is a major component of overall QOL.

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    Predic t ive val id i t y

    Studies are also underway to examine the ability of theHealthy Days measures to predict morbidity and mortality. The Pennsylvania State University Department ofBiobehavioral Health is now tracking 82,000 low-incomeelderly adults in a predictive validity study to link theHRQOL-14 with prescriptions, health care utilization,and mortality (Ahern 1999). This study has been fundedby the CDC Office on Womens Health because about 3/4of the respondents in this study are women and qualityof life is an important womens health issue. Early resultsof this study suggest that a mailed version of the questions has good construct validity and that self-ratedhealth and each of the days questions are valid predictors of short- term mortali ty.

    Acceptabi l i t y

    Another study involving persons with known disabil it iesin the community and in institutional settings, performed by the St. Louis University School of PublicHealth, concluded that the 14 HRQOL questions have

    Quality of Life, Medications, and

    Health Among the Elderly

    Penn State University Department

    of Biobehavioral Health

    College of Health and Human Development

    F. Ahern, C. Gold, K. Dominick,

    L. Markovitz, D. Heller

    Key HRQOL-14 Findings: N=82,853

    1. G o o d construct validity in a s ta tew ide

    population o f o lder low -income

    a d u lt s

    demo gra phy &socioeconomicstatus

    disease

    residential status

    prescription drug use

    2. The core Hea lthy Da ys mea sures predict

    mortality/hospitalization

    criterion validity with respect to the SF-36 and areacceptable for use with people with disabilities in bothsurveillance and research (Andresen 1999-1).

    Reliab i l i t y and respo nsiveness

    Reliability is the consistency or degree of dependabilityof a measuring instrument. Responsiveness is the degreeto which a measure is capable of reflecting changes overtime. The University of Oslo studied both of these characteristics in a nationwide study of Norwegian adultswith a follow-up survey and found that the Healthy Daysmeasures had good internal consistency reliability andthat response changes on the follow-up survey wereindicative of actual changes in respondent health status(M oum 1999). A telephone-based reliability study by St.Louis University School of Public Health in a populationof persons with known disabilities (N=52) found sub

    stantial re-test reliability after about one week for theeight days questions, but not as good reliability for thesix categorical response measures (Nanda 1998).

    Another longitudinal validation study with older,low-income, African American males conducted by

    Measuring Health and Disability

    with the CDCs BRFSS

    St. Louis University School of Public Health

    E. Andresen, B. Fouts, F. Wolinsky,C. Brownson, J. Romeis

    Key HRQOL-14 Findings: N=513

    1. G o o d construct validity in a po pulation

    of persons with disabilities

    2. Good respondent acceptability rat ings

    IADL 93%

    HRQOL-14 92%

    SF-36 90%

    QWB 87%

    3. Acceptable correlation w ith rela ted

    SF-36 sca les

    depression .71

    vitality .69

    anxiety .67

    pain .61

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    Validation Columbia University School of Public Health found thatchanges in respondents answers to the physical health

    days question were consistent with reported medicalcare utilization over a period of several months. In this

    study, the mental health days and depression days measures showed impressive correlations with the Center forEpidemiologic Studies Depression Scale (CES-D).

    What challenges in measurement have been

    identified?

    Some degree of response error is unavoidable whencomplex concepts are being measured. Responseerrors can occur if the respondent has difficulty

    interpreting either what the question is really asking orwhat a satisfactory response will be. Further confound

    ing this potential difficulty are issues unique to surveying older respondents, differences in how culturalgroups view their health (Larson 1998), and issuesinherent in administering surveys by telephone, in-person, or by mail (M oum 1998).

    Generally, the response format (in this case, numberof days) signals respondents about what sort of infor-

    Validation of BRFSS QOL Items:

    Harlem Prostate Screening Project

    Columbia University College

    of Physicians and Surgeons

    S. Albert

    Key HRQOL-14 Findings: N=239

    1. Acceptable construct validity in a popu

    lat ion of low -income older African

    America n ma les

    2. G o o d correlation w ith ot her scales

    pa in .60 SF-36 (pa in)

    da ys-men ta l .59 CESD

    de pre ssio n .58 CESD

    2. Unhea lthy physical d ays w ere responsive

    to changes in reported doctor appoint

    ments and hospita l izat ions

    mation is being requested and how to formulate ananswer. However, older people often provide narrativeanswers and are less likely to respond within the formatspecified by the question. A National Center for HealthStatistics (NCHS) cognitive study indicated that olderrespondents may have trouble translating frequencyinformation recalled from memory into required surveyresponse categories (Beatty 1996, Schechter 1998). Thelevel of their health and activity l imitations may not easily be described as occurring or not occurring for a givennumber of discrete days, and memory problems mayfurther compromise the accuracy of their answers. Many

    respondents appear to give a response that representstheir overall impression of their health over the recentpast versus an actual count of days.

    Good results on reliability, responsiveness, andvalidity studies, however, suggest that the responseerror rate is not too great. For instance, in a recentmixed-mode panel study of the reliability, responsiveness, and other measurement properties of the

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    Healthy Days measures in a nationwide sample of What is being done to address problems in2400 Norwegian working-aged adults, the measures accuracy?were found to have normal reliability and test-retestcorrelations (M oum 1999). Almost all items show

    Interviewers are trained to help respondents who

    responsiveness to change in respondent-defined have difficulty with numbers to provide a numericalhealth; the summary measure of healthy days was response of symptom days. For example, if someone

    the best predictor. answers a few days or several days, the interviewer

    The Norwegian-language study noted that there would then ask, Was that for 3 days, 4 days, 5 days, orwere some expected mode effects with persons report- more than that? Also, research that correlates non

    ing somewhat more impaired mental health on the self- response and inconsistent responses for persons withadministered mail version versus the telephone version diagnosed physical and mental conditions, including

    of the questions (M oum 1998). In the only U.S. study dementia, is being planned in longitudinal studies thatthat has examined mode effects, the St. Louis have incorporated the core Healthy Days measures.

    University study of persons with known disabilities Other studies are underway to examine statistical issues

    found generally better HRQOL reported by respon- of sampling, population weighting, and aggregation ofdents for the HRQOL-14 measures in the in-person BRFSS estimates(Schulman 1999).

    interviews versus the telephone interviews, with signif i

    cantly better HRQOL reported in-person for the activity limitation days, any current activity limitation, andneeding help with personal care measures (Andresen1999-1).

    Other Healthy Days Validation Studies

    Research Group Lead Scientist Key Features

    COMPLETED:

    St. Louis U. SPH C. Newschaffer SF-36, chron dis/depression

    NCHS Cog. Lab S. Schechter cognitive interviews (elders)

    Georgia State U. S. Diwan focus groups (elders)

    U. of Michigan L. Verbrugge activity limitations

    Case Western U. E. Borawski severe work disability

    IN PROGRESS:

    McMaster U. S. Ounpuu disease, demography

    U. Oslo T. Moum psychometrics, mode,

    reliability & responsiveness

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    foster a sense of community ownership and participation(Dever 1991, IOM 1997). CDC and state and local healthagencies benefit by learning about community indicators, concepts of sustainability, and the influences of the

    environment and the economy on population health.Adopting a quality of life approach to community

    health assessment can offer health agencies a popularand positive way to integrate diverse activities and contribute to the vitality of their communities (Moriarty1996, 1999-1). Impaired health days may reflect poorhealth days on the job and increased health care use aswell as diminished quality of life. These measures translate well to partners in public health such as the businessand education communities. Because data based on theHealthy Days measures reflect the combined effects ofmany groups actions in a community, successful interventions and healthy public policies require active partnerships with the communitys major players.

    COST-EFFECTIVENESS ANALYSIS

    An econom ic evaluat ion in w hich

    alternative programs, services, or

    interventions are compa red in terms of

    the cost per unit of clinical effect (forexample, cost per life saved, cost per

    millimeter of mercury of blood pressure

    low ered, or cost per q uality-ad justed

    life -yea r ga ined). The last f orm o f me a s

    uring outcom es (an d eq uivalent s such

    a s healthy days of life gained) gives

    rise to w ha t is also referred to as

    COST-UTILITY ANALYSIS.

    From : Glossary of Met ho do log ic Terms (American

    Medical Associat ion, Archives of Interna l Medicine).

    http://archinte.ama-assn.org/info/auinst_term.html

    How are the HRQOL measures being used to identify

    and address the needs of special populations?

    Uses in cl inical med icine

    Although the HRQOL-14 measures were designed forpublic health surveillance, they may also prove useful inhelping to measure the medium- and long-term effectsof medical care. Recently, the Foundation forAccountability (FACCT) in Portland, Oregon, has beendeveloping chronic disease outcome measures for diabetes, asthma, and coronary artery disease (SeeFACCT|ONE at http://www.facct.org/ ). The initial version of these measures includes both the SF-12 (anabbreviated form of the SF-36) and the core HealthyDays questions. Inclusion of the core Healthy Days questions in clinical assessments provides useful data on how

    patient populations differ from those in the broader geographic community.

    Disabi l i t y

    A study conducted by the St. Louis University School ofPublic Health concluded that the HRQOL-14 questionsare acceptable to use with people with disabilities(Nanda 1998). A study at Case Western ReserveUniversity studied the county-level prevalence of severework disability and found that the estimates of HRQOLfrom the BRFSS were highly correlated with U.S. Censusand Social Security figures (Borawski 1999, Jia 1999).

    Healthy Days measures are now used by all DisabilityPrevention States as part of a standard set of questions

    pp

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    Practi

    calApplications

    The Severe Work Disability Rate by County, 19951996 BRFSS

    that includes the HRQOL-14 questions and nine questions that pertain specifically to disability and relatedconcepts. Because it includes the HRQOL module, the

    Disability set of questions makes it possible to comparepersons with disability to the general population, andthis comparison clearly shows the large overall differences in HRQOL burden (CDC 1998-2). Informationcan be culled from the BRFSS about preventive healthbehaviors practiced by an important population at elevated risk for many adverse health outcomes. TheDisability measures are part of a 14-state program toincrease surveillance of disability.

    CDC and others are now studying potential uses ofthe HRQOL data in tracking disability in the adult pop

    ulation and in estimating state-level economic implications of reported activity limitation (Andresen 1999-2,Andresen 2000, Verbrugge 1999). Public health disabilityresearch has broadened to concentrate on outcomes ofdisability, especially on secondary conditions that arecommon and preventable. This surveillance will also behelpful in targeting programs to prevent secondary conditions associated with disability and to identify environmental determinants of disabil it y.

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    Mean symptom days for selected activity-limiting conditions

    1995-1997 BRFSS (13 states)

    MAIN CAUSE OF LIMITATION

    MEASURE NO LIMIT ARTHRITIS CANCER DEPR/ANX

    Unhealthy days 4 12 19 21*

    Low vitality 10 18 22 24*

    Pain 1 13* 12 7

    Depression 2 5 10 19*

    Anxiety 5 8 11 19*

    Sleeplessness 7 9 11 13*

    Limitation of 1 5 13* 13*

    usual activities

    * highest mean for sympt om

    Racial and et hn ic gro up s population data clearly show that persons who report a

    According to results from the core HRQOL questions, current activity limitation because of a chronic health

    Native Americans and Alaskan Natives reported the condition also report much more symptom burden than

    highest mean number of impairment days of any sub- those with no limitation (CDC 1998-2)( Table 2). The

    population (Table 1). Survey results may even be under- extent to which particular symptoms are reported tends

    reported because Native Americans have the highest per- to reflect the expectations for each diseasefor example,

    centage of phoneless households of any racial or ethnic high levels of pain for cancer and arthritis. In chronic

    group (an estimated 23% in 1990)(Gi lli land 1998). This disease programs, HRQOL is useful both as a health out-

    HRQOL disparity alerts program planners to the need to come and a risk factor.

    focus efforts on Native Americans and Alaskan Natives.Such findings of health deficits can be considered inplanning future Indian Health Service services (John1999).

    Puerto Ricans responding to a Spanish language version of the BRFSS also report high levels of HRQOLimpairment. These responses suggest the need for fur

    ther study of this population and the potential value oftranslating the Healthy Days questions into other languages.

    Chro nic disease epid emio log y

    HRQOL surveillance is particularly relevant to the fieldof chronic disease epidemiology. It provides direct evidence of the considerable population burden of long-term health conditions. The Healthy Days measures and

    pp

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    Practi

    calApplications Arthr i t is

    The Arthritis Program at CDC is interested in assessingquality of life in a nationally representative sample ofpersons with reported or diagnosed arthritis and relat

    ed conditionsincluding the extent to which HRQOLvaries by level of physical fitness and lower bodystrength. The National Arthritis Action Plan targetsHRQOL data as a key surveillance need (ArthritisFoundat ion 1999).

    National Arthritis Action PlanRecommendations on Quality of

    Life Surveillance, 1999

    Encoura g e sta tes to use the BRFSSmod ules on a rthrit is an d quality

    of life

    Encourag e the d evelopment and use

    of modules on arthri t is and quality of

    life in na tiona l da ta sets (e.g., NHIS,

    NHANES)

    Ana lyze da ta on a rthrit is and quality

    of life (e.g., from the BRFSS, NHIS, &

    NHANES) to q ua ntify t he impa ct of

    arthritis on quality of life

    Monitor chan ges in th e o ccurrence

    of arthri t is an d i ts impact (e.g. , on

    disab i li ty a nd quality of life)

    Surveillance forarthritis is criticalfor understandingthe epidemiology of

    this disease, targeting interventions,developing policy,and setting priorities for preventionresearch. Specificactivities to improve arthritis surveillance includeencouraging statesto use the full set ofHRQOL-14 measures. Analyzing these data should helpquantify the impact of arthritis on quality of life.

    Preliminary results from an analysis of 1996 1998BRFSS data showed that, compared with respondentswithout arthri ti s, persons with arthr it is (defined as having chronic joint symptoms or doctor-diagnosed arthritis) reported worse age-adjusted HRQOL for bothfemales and males on all four core BRFSS measures(CDC 2000). HRQOL measures will be useful to statesfor tracking arthritis- related Healthy People 2010objectives and for measuring progress toward the plansgoal of increasing quality and years of healthy life.

    Cardi ovascular health

    The Cardiovascular Health Branch of the CDC/NCCDPHP Division of Adult and Community Health hasrecently begun to study the use of the Healthy Daysmeasures in its research. In recent presentations of dataderived from the BRFSS, the measures were shown to beuseful in characterizing the excess symptom burden ofself-reported heart disease and stroke. The apparentassociation of HRQOL with cardiovascular disease riskand protective factors is a promising area of research thatoffers hope for new disease prevention and controlstrategies (Greenlund 2000).

    Ag ing

    The Healthy Days measures and population data are particularly useful for identifying disparities among vulnerable groups of older adults, because many of them havechronic health conditions that are not easily assessed byother available means. In a December 1999 MMWRSurveillance Summary analysis, the CDC Health Careand Aging Studies Branch reported notable state differences in mean unhealthy days reported by adults aged 75

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    PolicyImplications POLICY IMPLICATIONS

    What are the policy implications of HRQOL

    surveillance?

    The Healthy Days measures are beginning to showtheir value for population surveillance and program planning and evaluation. Because the

    Healthy Days measures consistently reflect populationdifferences in educational attainment, income, employment status, marital status, chronic diseases, and disability, and because they correlate with broader communityhealth status indicators such as the proportion of birthsto adolescents, they offer health agencies a useful tool forguiding healthy public policy and collaborating withpartners outside the health community (Institute ofMedicine 1997). These measures assess the burden of bothshort-term and persistent physical and mental healthproblems in a manner that is not disease-specific.Therefore, health planners and legislators can use themeasures and resulting data to help allocate resourcesamong competing health programs and to guide healthpolicy by tracking important short- and long-term effectsof health programs. Because of their sensitivity to broadinfluences such as seasonal patterns and time trends, theHealthy Days measures are also likely to be useful indetecting the impact of major population-based policy orinterventions.

    Why is HRQOL surveillance important in Healthy

    People 2010?

    Healthy People 2010, developed with leadership ofthe Department of Health and Human Services,is the nations prevention agenda with a score

    card to assess progress toward meeting goals (DHHS2000). It is a road map that can be used by states, communi ties, professional organizations, and others who areconcerned about increasing life expectancy and enhancing population health. Healthy People 2010 has two majoroverall goals: 1) to increase the quality and years of

    healthy life and 2) to eliminate health disparities. By continuously tracking population HRQOL in national andstate surveillance systems, the Healthy Days measures and

    To a f f e c t t h e q u a l it y o f t h e d a y t h a t

    is the h ig hes t o f a r t s. -Tho rea u

    data will help to directly monitor the nations and statesprogress toward meeting thefirst goal of improvedHRQOL. This will help toassure that the net progress inachieving targets set by theHealthy People 2010 objectivesin specific focus areas is notoffset by unanticipated newdiseases, barriers, or healthproblems.

    The second major goal of Healthy People 2010 is toeliminate health disparities among segments of the population. BRFSS and NHANES data obtained from socioeconomic and demographic questions and the Healthy

    Days measures will help to quantify perceived physicaland mental health disparities among population subgroups on the basis of characteristics such as gender, raceor ethnicity, education, income, place of residence, andsexual orientation. The Healthy Days population surveillance data also offer great promise as a tool to help identify more precisely which individual behaviors and community-level factorssuch as physical activity and safeneighborhoodscontribute to good health. Identifyingthese factors in turn helps program planners to focustheir resources on the health improvement interventionsmost likely to be effective in eliminating disparities.

    How do Healthy Days relate to the Healthy People

    2010 Leading Health Indicators?

    The leading health indicators are a set of 10 measures intended to make Healthy People 2010 moreuseful as a focus of national attention and as a tool

    for monitoring the health of Americans. Although thefull set of objectives for Healthy People 2010 will be usedby health professionals, the leading health indicators are

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    intended to engage the public and Respo nsible sexual b ehavio rother health partners. There is Although no such data are currentlygreat potential for using the

    available for analysis, the core HealthyHealthy Days measures and popu-

    Days and sexual behavior measures nowlation data as a unifying theme that being asked in the NHANES examinalinks the Healthy People 2010

    tion component will provide data for agoals, leading health indicators,

    study of potential connections betweenand objectives. For example,

    HRQOL and responsible sexual behav-Healthy Days data can provide

    ior. This is an important preventionvaluable insights on the individual

    y

    p

    and community determinants ofthe leading health indicators and can demonstratethe overall population effects of improvements in theindicators:

    Physical A ctivit y

    Cross-sectional analyses show that Healthy Days measures are correlated in expected ways with leisure-timephysical activity and inactivity (Table 1). Healthy Dayscould be useful outcome measures that change positivelyin response to exercise programs and might also help topredict whether persons will begin and maintain an exercise program.

    Overw eight and o besity

    Studies comparing unhealthy dayswith Body Mass Index(BMI) show that adults who are either underweight orobese report higher levels of impaired HRQOL (Ford

    2000)(Table 1). BMI is similarly associated with depression days and anxiety days (Table 2). This informationprovides valuable insights into the causes and effects ofobesity, a major U.S. public health problem.

    Tob acco use

    Compared with adults who have never smoked, those whoare former smokers and current smokers report higherlevels of unhealthy days (Table 1). Most of these unhealthydaysare attr ibutable to impaired mental rather than physical health, which should help focus exploration on potentially fruit ful areas of prevention or health promotion.

    Sub sta nce abu se

    Population data provide some support that HRQOL islower among those who report high levels of alcohol usein the past month. Although the accuracy of self-reported data may be especially problematic among this group,the collection of data about health perceptions of persons who use and abuse substances may yield newinsights into prevention and treatment approaches.

    research area that needs exploration.

    Men t a l h eal t h

    Population surveillance of perceived mental distressingeneral as well as symptoms of depression, anxiety, sleeplessness, and lack of vitalityis an integral aspect of theHealthy Days measures (Borawski 1998). Of all adults

    who report a current activity limitation, those who saythat the major cause is depression, anxiety, or some otheremotional problem report the highest levels of recentsleeplessness, the lowest levels of vitality, and the highestlevels of recent activity limitation (Table 2).

    In jury and v io lence

    The Healthy Days measures are potentially useful inmeasuring the perceived burden of injuries and disabilitiesincluding the effects of partner violence. For example, in one study involving 13 states, the 1.7% of adultswho reported a current activity limitation due mainly to

    a fracture, bone, or joint injury had these limitations foran average of 5.9 years and reported an average of 11.8recent pain days10 times as much as adults with nocurrent activity limitation, who averaged only 1.1 paindays (CDC 1998-1)( Table 2).

    Env i ronmenta l qua l i t y

    Although no analyses have yet been made of the relationships between unhealthy daysand environmental quali ty,community residents who have asthma or similar respiratory conditions would likely report more unhealthydays in periods of poor air quality than during periods of

    clean air. Poor water and other environmental contaminants are also likely to be associated with reports of lowHRQOL.

    Immun iza t ion

    Some BRFSS data are available for analysis of relationships between HRQOL and influenza and pneumoniaimmunization status. This is a prevention research areathat needs exploration.

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    PolicyImplications Access to care

    Adults who report having no health care coverage orinsurance also report higher levels of unhealthy dayscompared with those with coverage (Tables 1, 2), mostlybecause of the higher levels of perceived mental distressamong those with no coverage.

    How can the Healthy Days measures support

    epidemiologic and prevention research?

    The validity, brevity, and comparability of theHealthy Days measures make them ideal additions to existing and new survey instruments to

    enhance opportunities for epidemiologic and prevention research.

    The addition of the core Healthy Days measures tothe NHANES, beginning in 2000, supports public healthprevention goals. NHANES measures the national burden of preventable disease, injuries, and disabilities. Itwill provide valuable new insights into the relationshipbetween HRQOL and clinically-measured health characteristics and conditions such as blood pressure, physical strength and endurance, oral health, and mentalhealth (http://www.cdc.gov/nchs/nhanes.htm).

    Moreover, the addition of the HRQOL questions tothe NHANES survey is important because it is a nationally representative survey that is linked with othernati onal surveys and health outcomes. NHANES

    Healthy Days data will help validate peoples self-reportsin comparison with the NHANES objective measures ofphysical health and blood work for interviewed subjects.NHANES studies of the levels of reported unhealthydays and activity limitation days in relation to measuredbody mass index and physical endurance, as well as toreported nutritional and physical activity patterns, canprovide research-based messages to support relatedhealth communication objectives. Adding the Healthy

    Days questions to NHANES extends the HRQOL surveillance to adolescents as well as adults and will yield

    important information on the nature and extent ofhealth disparities among geographic and socio-demographic groups.

    How can an HRQOL focus support community

    mobilization?

    The Healthy Days measures have been used effectively in Boone County, Missouri since 1993 tohelp identify health problems of vulnerable

    groups and to justi fy addit ional funding for addressingthese disparities. The measures are also proving to be

    valuable for population health assessment in Hamilton,Ontario (Ounpuu 2000), and as community health indicators in King County, Washington (see CommunitiesCount 2000: Social and Health Indi cators Across King

    County at http://www.communitiescount.org). In addition, the utility of the core measures to identify healthneeds and changes in communities is currently beingtested by both the CDC Division of Adult andCommunity Health and the Urban Research CenterProgram of the CDC Epidemiology Program Office.

    The Healthy Days measures and data have attractedthe interest of the National Association of County andCity Health Officials (NACCHO), and their applicability to local health agencies has been described in articles in the NACCHO monthly newsletter (Moriarty1996, Cent ra 1998). More recently, with support fromthe Health Resources and Services Administration, thePublic Health Foundation and its partners, NACCHOand ASTHO, have included county-level BRFSS datafrom the four core Healthy Days measures in their July2000 Community Health Status Indicator (CHSI)reports (see: http://www.communityhealth.hrsa.gov/ ).

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    The PHF is also now collaborating with the CDC toidentify county-level indicators of HRQOLusingmean unhealthy days as a summary measure of perceived population physical and mental health (Kanarek

    2000). Initial findings from this study show that adultsresiding in counties with the largest (i.e., 1 million)and smallest (i.e.,

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    Conclusions What areas need future study and analysis?

    Areas in which future effort will extend the value of theHealthy Days measures include:

    1.Use of alternative weighting methods for aggregating multiple years of data and for estimating thesub-state prevalence of HRQOL; use of other analytic methods, such as multilevel analyses, todescribe relationships between aggregated BRFSSdata and potential community indicators of population HRQOL.

    2.Validation studies that simultaneously compare theHealthy Days measures with gold standard measures of mental illness, such as the DiagnosticInterview Schedule (DIS) for depression and anxi

    ety; additional validation studies for persons withknown major chronic health conditions, such asdiabetes, cardiovascular disease, asthma, and cancer.

    3.Measurement research, such as sensitivity/specificity analyses, to identify appropriate cutoff points foranalysis and population prevalence threshold levelsthat indicate policy-relevant HRQOL changes foreach Healthy Days variable.

    4.Studies to demonstrate that the Healthy Days measures are suitable for measuring the HRQOL effectsof public health interventions and are thereforesuitable for use on cost-effectiveness studies.

    5.Studies of mode effects (self-administered versustelephone versus in-person versus proxy) and feasibility in a variety of settingsincluding prisons,homeless shelters, clinics, and assisted-living andskilled nursing facilities.

    Lessons learned from HRQOL

    surveillance in the U.S.

    1. Consensus versus vision no one idea l se t of

    measures

    2. Clarity is critical e.g. , perceived good

    menta l and physical

    health over t ime

    3. Brevity is best four q uest ions are ea sy

    t o a d d

    4. Validity is essential comparisons w ith

    valida ted mea sures;

    prediction studies

    5. Continuously collected show group

    HRQOL data are useful differences, trends,

    &socio-environmental

    effects

    6.Direct measure-to-measure (crosswalk) and risk-adjustment studies that examine potential uses ofthe continuous population data from the coreHealthy Days measures to predict expected HRQOL

    results in other surveys that use both the HealthyDays and other HRQOL measures.

    7.Predictors of HRQOL in persons.

    8.Studies of HRQOL among the working-age population, including its effects on productivity and thecosts of unhealthy days to employers and society.

    9. Multi-variate analyses to quantify the associations ofspecific individual, group, and environmental characteristics with population HRQOL.

    Conclusion

    As knowledge builds about HRQOL surveillanceand its potential uses, the Healthy Days measuresand accumulating population data give states and

    communities a unique nationwide standard for identifying and tracking perceived unmet health needs and disparities. Focusing on HRQOL will help health agenciesbridge art if icial distinctions between physical and mentalhealth and spur collaboration with a wider circle ofhealth partners toward shared goals.

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