Defining and Measuring Chronic Conditions: Imperatives for Research, Policy, Program, and Practice

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1 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 1 of 16 SPECIAL TOPIC Volume 10 April 25, 2013 Defining nd Mesuring Chronic : Impertives for Reserch, Policy, Progrm, nd Prctice Richrd A. Goodmn, MD, MPH; Smuel F. Posner, PhD; Elert S. Hung, MD, MPH; Annd K. Prekh, MD, MPH; Howrd K. Koh, MD, MPH Suggested cittion for this rticle: Goodmn RA, Posner SF, Hung ES, Prekh AK, Koh HK. Defining nd Mesuring Chronic : Impertives for Reserch, Policy, Progrm, nd Prctice. Prev Chronic Dis 2013;10: DOI: PEER REVIEWED Astrct Current trends in US popultion growth, ge distriution, nd disese dynmics foretell rises in the prevlence of chronic diseses nd other chronic conditions. These trends include the rpidly growing popultion of older dults, the incresing life expectncy ssocited with dvnces in pulic helth nd clinicl medicine, the persistently high prevlence of some risk fctors, nd the emerging high prevlence of multiple chronic conditions. Although preventing nd mitigting the effect of chronic conditions requires sufficient mesurement cpcities, such mesurement hs een constrined y lck of consistency in definitions nd dignostic clssifiction schemes nd y heterogeneity in dt systems nd methods of dt collection. We outline conceptul model for improving understnding of nd stndrdizing pproches to defining, identifying, nd using informtion out chronic conditions in the United Sttes. We illustrte this model s opertion y pplying stndrd clssifiction scheme for chronic conditions to 5 ntionl-level dt systems. Although the literture does not support single uniform definition for chronic disese, recurrent themes include the non self-limited nture, the ssocition with persistent nd recurring helth prolems, nd durtion mesured in months nd yers, not dys nd weeks. Thrll (1) So fr, mny different pproches hve een used to mesure the prevlence nd consequences of chronic diseses nd helth conditions in children, resulting in wide vriility of prevlence estimtes tht cnnot e redily compred. vn der Lee et l (2) Introduction Current trends in popultion growth, ge distriution, nd disese dynmics foretell rises in the prevlence of chronic diseses, other chronic conditions, nd comintions of chronic conditions. Such trends threten oth the pulic nd finncil helth of the United Sttes nd include the rpidly growing popultion of older dults, the incresing life expectncy ssocited with dvnces in pulic helth nd clinicl medicine, nd the persistently high prevlence of some risk fctors (3). Trditionlly, medicl, pulic helth, nd socil progrms trgeting commonly defined chronic diseses hve focused on individul chronic diseses without considering the roder context of multiple risk fctors nd multiply occurring chronic conditions. Now, however, helth inititives hve egun to expnd to include not only chronic disese ut lso chronic conditions such s functionl limittions; ntomic prolems tht re not mnifesttions of physicl disese ut re permnent or long-stnding (eg, developmentl disorders, lim dysfunction, visul impirment); nd rod spectrum of ehviorl helth prolems, some of which hve trditionlly not een clssified s diseses (4 6). The ntion is recognizing the emerging high prevlence of multiple chronic conditions (MCC) nd relted implictions for prevention, tretment, pulic helth progrms, nd plnning (5 7). People who hve MCC my require incresed coordintion of cre from clinicins, pulic helth, nd socil progrms to improve their overll qulity of life. To coordinte ntionl response to issues relted to MCC, in 2010 the US Deprtment of Helth nd Humn Services

2 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 2 of 16 (HHS) unveiled strtegic frmework on MCC (6). Focus res include monitoring the helth of people who hve MCC nd fcilitting the incresed delivery of interventions, such s improved coordintion of cre to improve qulity of life. Preventing nd mitigting the effect of ny single chronic condition, or constelltion of conditions, requires improved mesurement. However, 2 mjor rriers exist. First is the lck of consistency in key definitions (eg, chronic disese, chronic illness, chronic condition) nd in dignostic clssifiction schemes (eg, self-report, Interntionl Clssifiction of Diseses [ICD] coding, Clinicl Clssifictions Softwre [CCS]) (1,2,8). Second re differences in dt collection methods nd in the design of dt sets tht confound efforts to chrcterize the epidemiology nd mngement of MCC in different popultion groups in different settings. To overcome these rriers, we need conceptul model tht includes stndrd cse definitions for individully or multiply occurring chronic conditions nd guidnce for pplying these definitions to systems tht provide dt on popultion helth. This model would ssist reserchers nd prctitioners in monitoring nd studying individul chronic conditions nd MCC. In this rticle, we outline such conceptul model for improving understnding of nd helping to stndrdize pproches to defining, identifying, nd using informtion out multiple chronic conditions in the US popultion. We first provide further context regrding the lck of consistency in pst definitionl pproches. We then descrie the conceptul model, developed y n MCC working group within the HHS Office of the Assistnt Secretry of Helth (OASH), nd detil the working group s development of list of selected chronic conditions. To demonstrte the opportunities nd chllenges ssocited with using this set of chronic conditions, we provide n overview of 5 dt systems mintined y HHS tht mesure chronic conditions nd illustrte the model s opertion y pplying stndrd clssifiction scheme for MCC to the HHS dt systems. We conclude y suggesting options for policy mkers, pulic helth officils, reserchers, prctitioners, helth plns, nd others to consider for improving the collection, nlysis, nd use of dt on chronic conditions. Vritions in Defining nd Clssifying Chronic Accurte cse definitions re integrl to pulic helth surveillnce efforts for monitoring popultion helth nd for conducting pulic helth nd clinicl investigtions (9). However, definitions for chronic conditions vry widely. Selected definitions (Tle 1), drwn from peer-reviewed literture nd other pulicly ville informtion sources, represent pproches used in cdemi, government, nd other settings (4 6,10 16). These definitions exhiit heterogeneity in severl chrcteristics, such s the durtion or ltency, need for medicl ttention, effect on function, pthology, deprture from well-eing, noncontgious nture, multiple risk fctors, nd nonmenility to cure. For exmple, most ddress durtion nd limittions in function, ut only one requires the ptient to hve specil trining for rehilittion (10). The heterogeneity of these definitions stnds in strk contrst to the process of mesuring infectious conditions using estlished cse definitions (17 19). As result, lists of chronic conditions vry, nd the ccurcy nd precision of estimting the mgnitude of chrcteristics such s occurrence, urden, nd ssocited costs re compromised. The clssifiction schemes currently used for identifying chronic conditions vry in origin, scope, nd composition (Tle 2 [which lso includes the newly developed OASH list]), nd few hve een pplied cross multiple dt systems. For exmple, 3 systems were developed through the comined use of expert opinion nd ICD codes: the Chronic Condition Indictor suggested y Hwng nd collegues identifies 185 conditions (4); the Chronic Condition Dt Wrehouse, developed y the Centers for Medicre nd Medicid Services (CMS), identifies 26 conditions (21); nd the Hierrchicl Condition Ctegory system identifies 70 conditions (22). In 1999, the Centers for Disese Control nd Prevention (CDC) nd the Council of Stte nd Territoril Epidemiologists developed set of 73 chronic disese indictors tht lter ws expnded to 97 cross-cutting indictors for use y jurisdictions t different levels to uniformly define, collect, nd report chronic disese dt tht re importnt to pulic helth prctice (20). These clssifiction schemes hve een pplied to specific dt systems for specific purposes, such s reporting stte-level dt for pulic helth gencies. However, vritions in the numer of conditions nd rry of conditions constrin comprisons of findings tht result from use of different clssifiction schemes. Conceptul Model for Stndrdizing the Anlysis of Helth Dt Sets for Selected Chronic To stndrdize the nlysis of helth-relted dt sets for chronic conditions, we propose conceptul model tht involves clssifiction scheme consisting of 2 relted dimensions: 1) identifying nd specifying conditions of interest, nd 2) understnding the structure of the dt system of interest. The intersection of these 2 dimensions (specificlly, pplying coding scheme for the conditions of interest to the elements of dt system) llows for the production of chronic condition indictors for progrm, reserch, nd policy purposes (Figure).

3 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 3 of 16 Figure. Conceptul model for developing nd pplying clssifiction schemes for chronic conditions to dt elements for studying nd monitoring helth conditions. [A text description of this figure is lso ville.] The first dimension (identifying nd specifying codes for conditions) cretes clssifiction scheme of coding rules tht enle set of specific individul conditions to e identified in dt records creted in given dt system. This process initilly requires the specifiction of criteri (eg, indictors for chronicity, need for ongoing medicl mngement, durtion of effect on function) for defining chronic conditions. These criteri my then e pplied to sets of helth conditions to select chronic conditions of interest. Finlly, the set of chronic conditions of interest must e mpped to mesures tht use stndrd coding rules nd lgorithms tht cn e systemticlly pplied cross different dt systems. The coding lgorithms cn e dt system-specific, ecuse they re function of the type of dt ville (eg, ICD, CCS, survey responses). The second dimension (understnding dt systems) is hierrchicl model tht genericlly descries mjor of dt systems. The highest level is dt system, such s surveillnce system or fmily of relted systems. Such systems, in turn, consist of component dt sets tht re discrete units tht cn e used for nlysis. In the exmple of surveillnce systems, dt set could e the dt collected for 1 yer. Then dt sets cn e deconstructed further into dt elements tht is, the individul tht form dt set, typiclly representing n individul person or encounter (eg, clinic visit, hospitl dischrge) s the unit of nlysis. The point t which the 2 dimensions intersect (ie, where the coding scheme is pplied to the dt elements) results in the output of n indictor of the numer of chronic conditions. This indictor llows reserchers nd others to exmine vriility in vriety of outcome, cost, nd use mesures, including mortlity, ssocited costs, helth cre use, nd other prmeters. Development of the OASH List of Selected Chronic Another key issue involves the decision sis on wht to include in sets of selected conditions. An exmple of the rmifictions is tht ptterns of key indictors, such s MCC prevlence, services utiliztion, nd cost indictors my vry directly s function of the type nd numer of conditions. The optiml list should comprise numer of conditions sufficient to e prcticlly useful ut not overly inclusive. To ddress the need for such list, nd recognizing the need for stndrd clssifiction scheme for chronic conditions, OASH used deliertive process involving its MCC working group suject mtter experts in clinicl medicine, epidemiology, nd pulic helth. The gol of this process ws to develop list tht would include conditions tht meet the definition for chronicity, re prevlent, nd re potentilly menle to pulic helth or clinicl interventions or oth. The criterion for chronicity ws ddressed y pplying the definition of chronic condition used in the HHS strtegic frmework on MCC (6). This definition, which is sed on pproches dpted from other sources, sttes tht chronic illnesses re conditions tht lst yer or more nd require ongoing medicl ttention nd/or limit ctivities of dily living (such s physicl medicl conditions, ehviorl helth prolems, nd developmentl disilities) (4 6). To produce the OASH list, the working group pplied this definition nd relted criteri to sets of conditions used in 3 sources: 1) the CMS Chronic Condition Dt Wrehouse (21); 2) the list of Priority identified y the Agency for Helthcre Reserch nd Qulity s Effective Helth Cre Progrm (23); nd 3) the Roert Wood Johnson Foundtion chrt ook, Chronic Cre: Mking the Cse for Ongoing Cre (5). The result of this process ws n ggregte set of 20 conditions (Tle 3) ech of which ws listed y t lest 1 of these sources nd the mjority of which were drwn from t lest 2 of the 3 sources tht represented prcticl

4 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 4 of 16 lnce of the ove criteri. Identifying mngele numer of conditions helps to ensure comprility cross dt systems tht encompss spectrum of popultions nd settings. In ddition, these conditions cn e identified using ICD codes nd pplied to vrious dt systems (Tle 3), lthough how the conditions re coded vries s function of dt vilility. Selected HHS Helth Dt s for Studying Chronic The component gencies of HHS mintin mny privcy-protected dt systems tht provide informtion on the helth nd well-eing of the US popultion. Mny of these dt systems include informtion out MCC nd use of relted helth resources. In consulttion with HHS gencies, the OASH working group selected 5 of these dt systems on the sis of key criteri, including sufficiency of smple size; suitility for providing ntionl-level, representtive dt; nd recentness of dt collection. These systems were the Ntionl Helth Interview Survey () (24,25); Ntionl Amultory Medicl Cre Survey () (26,27); Medicl Expenditure Pnel Survey (28); Ntionwide Inptient Smple of the Helthcre Cost nd Utiliztion Project (29 31); nd Medicre eneficiry enrollment nd clims dministrtive dt from CMS (21) (Appendix) (Tle 4). Detils on these 5 systems re ville elsewhere (21,24 31). Appliction of Common Conceptul Model to HHS Helth Dt s The OASH working group selected codes tht could e used to link the OASH list of 20 selected chronic conditions to mesures in the HHS dt systems. Although the CCS codes used y the Medicl Expenditure Pnel Survey nd Ntionl Inptient Smple dt systems re sed on ICD, the ICD codes used y CMS in the Chronic Condition Dt Wrehouse do not completely correspond with those in the CCS. For this reson, the OASH working group identified ICD codes insted of CCS codes for the CMS Beneficiry Clims Dt File. The complete list of CCS codes is mintined y the Agency for Helthcre Reserch nd Qulity (31). Three ptterns descrie the specificity of the mpping for the selected conditions. The first pttern is chrcterized y the presence of mesure for condition in ech dt system. For exmple, mesure for hypertension is in ll 5 dt systems. For this pttern, the dt elements reflect vrious sources: for exmple, in, respondents provide the self -reported dignosis for ech condition, wheres in, dt re collected for oth the reson for the current visit nd for checklist of ever existing conditions. However, not ll dt systems mesure ll 20 conditions: mesures 10, mesures 19, nd CMS mesures 15; oth the Ntionwide Inptient Smple nd the Medicl Expenditure Pnel Survey mesure ll 20. In the second pttern, lthough 1-to-1 mtch ws not found, relted conditions could e mpped onto the sme generl condition descried in the OASH list. For exmple, lthough does not hve specific question on chronic kidney disese, it does hve questions on wek or filing kidneys, which could e mpped to chronic kidney disese. For the third pttern, dt in given system could not e mpped to the condition identified in the OASH list. For exmple, dt on congestive hert filure, crdic rrhythmis, hyperlipidemi, dementi, nd depression re not collected y, lthough dt on these conditions re collected y the other 4 dt systems. Other conditions for which dt re not ville in include utism spectrum disorder, HIV, osteoporosis, schizophreni, nd sustnce use. For, dt re not ville for chronic kidney disese; nd for CMS, for utism spectrum disorder, heptitis, HIV, schizophreni, or sustnce use disorders. Although clims dt my e ville from CMS, they re not now ville in the nlytic dt sets. Summry As the prevlence of chronic conditions continues to increse in the US popultion, the United Sttes will fce even greter chllenges in delivering cre to people with MCC (32 35). Accurte, reproducile, nd understndle mesures of the occurrence nd impct of MCC will e n importnt prt of the solution for these chllenges. Such mesures cn help in improving surveillnce, progrm plnning, trgeting nd evluting interventions, nd other essentil ctivities. More ccurte nd relile dt on individul chronic conditions nd on MCC re lso foundtionl in enling helth systems nd providers to trget, mesure, nd ultimtely improve popultion outcomes. As this rticle hs shown, improvements in mesurement require tht we first improve methods for chrcterizing nd monitoring chronic conditions, including chieving common greement on the mening of the terms chronic condition nd multiple. Our review of existing definitions showed not only how existing definitions differ ut how these differences ffect reserch nd prctice, including difficulties in compring results of studies nd the prevlence of MCC cross vrious dt systems. Although some commenttors hve defined multiple s the presence of 2 or

5 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 5 of 16 more conditions in n individul (4,5), further study of the numer of conditions nd specific dignoses my e improved y setting thresholds tht re tilored to inform clinicl prctice, pulic helth progrms, nd policy strtegies. Although the sence of stndrd cse definitions for chronic conditions poses mjor chllenges for uses cross dt systems, existing definitions nd clssifiction schemes might e pplied more esily cross multiple popultion sugroups within given dt system. For exmple, noting in the erly 1990s the inherent limittions of conditionspecific pproches to clssifying chronic conditions mong children, commenttors ssocited with reserch consortium on chronic illness in childhood pointed to the need for widely pplicle, ut modifile, definition of chronic conditions for use in reserch, progrm development nd delivery, nd development of helth cre policies (36). This pproch, nd similr conclusions y other investigtors (2), lthough specific to children, ers relevnce lso to dults, even though the epidemiology of MCC vries y popultion group. Our conceptul model provides frmework for more consistently pplying lists of selected conditions to multiple dt systems. For the OASH list of selected chronic conditions, the model explicitly documented dt elements tht were used to identify the selected conditions nd how the dt were collected nd coded. This conceptul model cn e used to document coding decisions tht re pplied to dditionl dt sets, n especilly importnt need when multiple dt systems re used to exmine the urden of chronic conditions. Although this model my e useful for improving the consistency in reserch nd progrms tht ddress MCC, other opportunities llow for refining sets of conditions. For exmple, rigorous mesure development process tht pplied decision rules to dt from multiple systems on key prmeters (eg, the prevlence of different conditions nd their effect on functionl sttus, use of services, nd costs) could ssist in refining sets of conditions for nlysis. Additionl nlysis to determine the optiml numer of conditions lso could help in refining mesures of the impct of chronic conditions in the US popultion. Although this rticle focused on consistency in defining nd clssifying chronic conditions, n importnt relted issue is the coordintion etween essentil ctors involved in developing nd using dt, including coordintion on methods for estlishing clssifiction schemes (ie, who does this, y wht mens, nd how often). Deciding on the numer of chronic conditions to include in given list nd ddressing implictions for key prmeters (ie, mesured prevlence, use, nd cost) require comintion of clinicl cumen nd expertise in use of surveillnce dt. Thus, the gps identified in this rticle help to shrpen focus on the need for collortion mong different orgniztions, gencies, nd institutions t different levels (ie, ntionl, regionl, stte, nd locl) tht collect dt nd mintin dt systems nd tht my enefit from using common conceptul model nd clssifiction scheme. Beyond dt mngers, nlysts, nd reserchers, other stkeholders need to engge in the process, including prctitioners nd policy mkers, who cn provide vlule input to guide nlysis of the most pressing needs for dt on chronic conditions. Reserchers, prctitioners, nd policy mkers cn consider using the issues identified in this rticle s the sis for improving the collection, nlysis, nd use of dt on chronic conditions in the United Sttes. Foremost, the exmintion of different clssifiction schemes nd their ppliction to multiple dt systems suggest tht the terms chronic disese nd chronic illness might e supplnted y wider doption of functionlly more ccurte nd inclusive term, such s chronic conditions. Greter consistency in nd more complementry use of clssifiction schemes for chronic conditions hold the promise for improving reserch nd generting stronger knowledge se for policy mkers nd progrm mngers. Acknowledgments We thnk those who reviewed this rticle nd provided feedck: Peter Briss, Dniel Friedmn, R. Gison Prrish, nd the memers of n HHS multiple chronic conditions dt inititive work group (Jill Ashmn, Kimerly Lochner, Steven Mchlin, Jennine Schiller, Anit Soni, Cludi Steiner, nd Brin Wrd). Author Informtion Corresponding Author: Richrd A. Goodmn, MD, MPH, Centers for Disese Control nd Prevention, Milstop K-40, 4770 Buford Hwy NE, Atlnt, GA Telephone: E-mil: rg4@cdc.gov. Dr Goodmn is lso ffilited with the Office of the Assistnt Secretry for Helth, US Deprtment of Helth nd Humn Services, nd Emory University Division of Generl Medicine nd Geritrics, Atlnt, Georgi. Author Affilitions: Smuel F. Posner, Centers for Disese Control nd Prevention, Atlnt, Georgi; Elert S. Hung, University of Chicgo, Chicgo, Illinois; Annd K. Prekh, Howrd K. Koh, Office of the Assistnt Secretry for Helth, US Deprtment of Helth nd Humn Services, Wshington, DC.

6 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 6 of 16 References Thrll JH. Prevlence nd costs of chronic disese in helth cre system structured for tretment of cute illness. Rdiology 2005;235(1):9 12. CrossRef PuMed vn der Lee JH, Mokkink LB, Grootenhuis MA, Heymns HS, Offring M. s nd mesurements of chronic helth conditions in childhood: systemtic review. JAMA 2007;297(24): CrossRef PuMed Li C, Blluz LS, Okoro CA, Strine TW, Lin JM, Town M, et l. Surveillnce of certin helth ehviors nd conditions mong sttes nd selected locl res Behviorl Risk Fctor Surveillnce, United Sttes, MMWR Surveill Summ 2011;60(9): PuMed Hwng W, Weller W, Ireys H, Anderson G. Out-of-pocket medicl spending for cre of chronic conditions. Helth Aff (Millwood) 2001;20(6): CrossRef PuMed Anderson G. Chronic cre: mking the cse for ongoing cre. Princeton (NJ): Roert Wood Johnson Foundtion; Accessed Decemer 25, US Deprtment of Helth nd Humn Services. Multiple chronic conditions strtegic frmework: optimum helth nd qulity of life for individuls with multiple chronic conditions. Wshington (DC): Accessed Ferury 21, HHS inititive on multiple chronic conditions. Accessed Decemer 25, Stein REK, Bumn LJ, Westrook LE, Coupey SM, Ireys HT. Frmework for identifying children who hve chronic conditions: the cse for new definition. J Peditr 1993;122(3): CrossRef PuMed Centers for Disese Control nd Prevention. Cse definitions for pulic helth surveillnce. MMWR Mor Mortl Wkly Rep 1990;39(No. RR-13):1 45. Bernstein AB, Hing E, Moss AJ, Allen KF, Siller AB, Tiggle RB. Helth cre in Americ: trends in utiliztion. Hyttsville (MD): Ntionl Center for Helth Sttistics; Wrshw G. Introduction: dvnces nd chllenges in cre of older people with chronic illness. Genertions 2006;30(3):5 10. Friedmn B, Jing HJ, Elixhuser A. Costly hospitl redmissions nd complex chronic illness. Inquiry ;45(4): CrossRef PuMed US Deprtment of Helth nd Humn Services. Helth, United Sttes, 2010: with specil feture on deth nd dying. Hyttsville (MD): Centers for Disese Control nd Prevention, Ntionl Center for Helth Sttistics; Appendix, definition of condition, p McKenn M, Collins J. Current issues nd chllenges in chronic disese control. In: Remington PL, Brownson RC, Wegner MV, editors. Chronic disese epidemiology nd control. 2nd edition. Wshington (DC): Americn Pulic Helth Assocition; p World Helth Orgniztion. Chronic diseses. Accessed Decemer 25, Florid Deprtment of Helth. Chronic disese definition. Accessed Decemer 25, Centers for Disese Control nd Prevention. Cse definitions for infectious conditions under pulic helth surveillnce. Accessed Decemer 25, Centers for Disese Control nd Prevention. Ntionlly notifile infectious conditions. Accessed Decemer 25, Centers for Disese Control nd Prevention Cse definitions: ntionlly notifile conditions infectious nd non-infectious cse s.pdf#NonInfectious. Accessed Decemer 25, Centers for Disese Control nd Prevention. Chronic disese indictors. Accessed Decemer 25, Centers for Medicre nd Medicid Services. Chronic condition dt wrehouse. Accessed Decemer 25, Pope GC, Kutter J, Ellis RP, Ash AS, Aynin JZ, Iezzoni LI, et l. Risk djustment of Medicre cpittion pyments using the CMS HCC model. Helth Cre Finnc Rev 2004;25(4): PuMed

7 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 7 of Agency for Helthcre Reserch nd Qulity. Effective Helth Cre Progrm. Priority conditions. Accessed Decemer 25, Adms PE, Mrtinez ME, Vickerie JL, Kirzinger WK. Summry helth sttistics for the U.S. popultion: Ntionl Helth Interview Survey, Vitl Helth Stt ;10(251): PuMed Schiller JS, Lucs JW, Wrd BW, Peregoy JA. Summry helth sttistics for U.S. dults: Ntionl Helth Interview Survey, Vitl Helth Stt ;10(252): PuMed Ntionl Center for Helth Sttistics. Pulic use dt file documenttion, 2009 Ntionl Amultory Medicl Cre Survey. Hyttsville (MD): Ntionl Center for Helth Sttistics. Tenney JB, White KL, Willimson JW. Ntionl Amultory Medicl Cre Survey: ckground nd methodology. Ntionl Center for Helth Sttistics. Vitl Helth Stt 2(61); Cohen JW, Cohen SB, Bnthin JS. The Medicl Expenditure Pnel Survey: ntionl informtion resource to support helthcre cost reserch nd inform policy nd prctice. Med Cre 2009;47(7, Suppl 1):S CrossRef PuMed Overview of HCUP. Helthcre Cost nd Utiliztion Project (HCUP), Novemer Rockville (MD): Agency for Helthcre Reserch nd Qulity. Accessed Decemer 25, Dtses HCUP. Helthcre Cost nd Utiliztion Project (HCUP), Novemer Rockville (MD): Agency for Helthcre Reserch nd Qulity. Accessed Decemer 25, NIS dtse documenttion. Helthcre Cost nd Utiliztion Project (HCUP). Novemer Rockville (MD): Agency for Helthcre Reserch nd Qulity. Accessed Decemer 25, Tinetti ME, Bogrdus ST, Agostini JV. Potentil pitflls of disese-specific guidelines for ptients with multiple conditions. N Engl J Med 2004;351(27): CrossRef PuMed Centers for Disese Control nd Prevention. Arthritis s potentil rrier to physicl ctivity mong dults with hert disese United Sttes, 2005 nd MMWR Mor Mortl Wkly Rep 2009;58(7): PuMed Institute of Medicine. Living well with chronic illness: cll for pulic helth ction. Wshington (DC): Ntionl Acdemy of Sciences; Brody JE. Tckling cre s chronic ilments pile up. New York Times, Ferury 21, Accessed Decemer 25, Perrin EC, Newcheck P, Pless IB, Drotr D, Gortmker SL, Leventhl J, et l. Issues involved in the definition nd clssifiction of chronic helth conditions. Peditrics 1993;91(4): PuMed Tles Tle 1. Selected s for Chronic Disese nd Other Chronic y Source nd Yer Sources, s, nd Components Hwng et l, 2001 (4) We defined person s hving chronic condition if tht person s condition hd lsted or ws expected to lst 12 or more months nd resulted in functionl limittions nd/or the need for ongoing medicl cre. Durtion: 12 months Functionl limittion: yes Need for ongoing medicl cre: yes Authors noted tht they defined chronic condition rodly for severl resons, including the following: 1) high proportion of individuls who hve chronic condition hve more thn 1 chronic condition; 2) functionl limittions nd other consequences of helth prolems often re independent of specific diseses; nd 3) wheres dignoses re importnt for medicl mngement, dignosis lone my provide incomplete informtion on moridity ecuse of vritions in condition-specific severity. Bernstein et l, 2003 (10)

8 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 8 of 16 Sources, s, nd Components A chronic disese or condition hs 1 or more of the following chrcteristics: is permnent; leves residul disility; is cused y nonreversile pthologicl ltertion; requires specil trining of the ptient for rehilittion; or my e expected to require long period of supervision, oservtion, or cre. Durtion: permnent Functionl limittion: yes (residul disility) Need for ongoing medicl cre: yes Includes rod spectrum of fctors ffecting helth nd functionl sttus. Wrshw, 2006 (11) According to common definition, chronic illnesses re conditions tht lst yer or more nd require ongoing medicl ttention nd/or limit ctivities of dily living (4). Durtion: 1 yer Functionl limittion: yes Need for ongoing medicl cre: yes Authors used modified version of the definition in Hwng et l (4). Friedmn et l, 2008 (12) Chronic condition is defined s condition tht lsts 12 months or longer nd meets 1 or oth of the following tests: 1) it plces limittions on self-cre, independent living, nd socil interctions; nd 2) it results in the need for ongoing intervention with medicl products, services, nd specil equipment. Durtion: 12 months Functionl limittion: yes Need for ongoing medicl cre: yes comines minimum durtion with function nd needs for tretment. Anderson, 2010 (5) Chronic condition is generl term tht includes chronic illnesses nd impirments. It includes conditions tht re expected to lst yer or longer, limit wht one cn do, nd/or my require ongoing medicl cre. Serious chronic conditions re suset of chronic conditions tht require ongoing medicl cre nd limit wht person cn do. Durtion: 1 yer Functionl limittion: yes Need for ongoing medicl cre: yes further differentites level of severity of condition. Ntionl Center for Helth Sttistics, 2011 (13) A helth condition is deprture from stte of physicl or mentl well-eing. In the Ntionl Helth Interview Survey, ech condition reported s cuse of n individul s ctivity limittion hs een clssified s chronic, not chronic, or unknown if chronic, sed on the nture nd durtion of the condition. tht re not cured once cquired (such s hert disese, dietes, nd irth defects in the originl response ctegories, nd mputee nd old ge in the d hoc ctegories) re considered chronic, wheres conditions relted to pregnncy re not considered chronic. Other conditions must hve een present for 3 months or longer to e considered chronic. An exception is mde for children ged less thn 1 yer who hve hd condition since irth: such conditions re lwys considered chronic. Durtion: not cured once cquired or lsts 3 months Functionl limittion: no Need for ongoing medicl cre: no Comines multiple fctors, including durtion, nonmenility of condition to cure, nd others.

9 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives fo... Pge 9 of 16 Sources, s, nd Components US Deprtment of Helth nd Humn Services (HHS), 2010 (6) Chronic illnesses re conditions tht lst yer or more nd require ongoing medicl ttention nd/or limit ctivities of dily living. Durtion: 1 yer Functionl limittion: yes Need for ongoing medicl cre: yes This definition, dpted from other sources (4,11), incorportes elements of durtion, medicl requirements, nd functionl sttus. It lso hs the dvntge of eing compct. The HHS Strtegic Frmework (6) lso dopts the definition of multiple used in nother source (5) s 2 or more concurrent chronic conditions. McKenn nd Collins, 2010 (14) They re generlly chrcterized y uncertin etiology, multiple risk fctors, long ltency period, prolonged course of illness, noncontgious origin, functionl impirment or disility, nd incurility. Durtion: prolonged course of illness or incurility Functionl limittion: yes ( functionl impirment or disility ) Need for ongoing medicl cre: no The most recent definition in this well known, prctice-oriented guide evolved from the definition in the guide s first edition in 1993: those tht hve prolonged course, tht do not resolve spontneously, nd for which complete cure is rrely chieved. World Helth Orgniztion, 2011 (15) Chronic diseses re diseses of long durtion nd generlly slow progression. Durtion: long durtion Functionl limittion: no Need for ongoing medicl cre: no Generic, highlighting progression. Florid Deprtment of Helth, 2011 (16) Chronic diseses hve long course of illness. They rrely resolve spontneously, nd they re generlly not cured y mediction or prevented y vccine. Durtion: long course Functionl limittion: no Need for ongoing medicl cre: no The definition of chronic disese includes n element on tretment. Tle 2. Clssifiction Schemes for Chronic, y Source, Developmentl Approch, nd Numer of Identified Clssifiction Scheme Chrcteristic Chronic Disese Indictors Chronic Condition Indictor Chronic Condition Dt Wrehouse Hierrchicl Condition Ctegory OASH List of Selected Chronic Source Centers for Disese Control nd Prevention (20) Hwng et l (4) Centers for Medicre nd Medicid Services (21) Pope et l (22) OASH/HHS

10 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 10 of 16 Clssifiction Scheme Chrcteristic Chronic Disese Indictors Chronic Condition Indictor Chronic Condition Dt Wrehouse Hierrchicl Condition Ctegory OASH List of Selected Chronic First yer pulished Method for identifying conditions nd developing clssifiction scheme Consensus pnel 3-digit ICD-9 code lgorithm; consensus process, physicin pnel ICD-9 code lgorithm 2-tier system of ggregting ICD-9-CM codes; forml development nd clirtion y cdemics Suject mtter expert review of existing schemes Numer of chronic conditions identified Originlly 21, now Arevitions: OASH, Office of the Assistnt Secretry for Helth; HHS, US Deprtment of Helth nd Humn Services; ICD, Interntionl Clssifiction of Diseses; ICD-9-CM, Interntionl Clssifiction of Diseses, 9th Revision, Clinicl Modifiction. The Council of Stte nd Territoril Epidemiologists originlly worked with epidemiologists nd chronic disese progrm directors t the stte nd federl level to select, prioritize, nd define 73 chronic disese indictors in 1999 (20). Tle 3. Twenty Chronic Selected y OASH for Stndrd Clssifiction Scheme nd Their Corresponding Codes in 5 HHS Dt s OASH List of Chronic Nme of Condition in Dt Collection Dt Collection Term or Code Used Hypertension Hypertension/high lood pressure Checkox 98, 99 98, , 401.1, 401.9, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Congestive hert filure Congestive hert filure Checkox , , , , , , , , , , 428.0, 428.1, , , , , , , , , , , , , Coronry rtery disese Coronry rtery disese Included in ischemic hert disese 100, , , , , , , , , , , , , , , ,

11 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 11 of 16 OASH List of Chronic Nme of Condition in Dt Collection Dt Collection Term or Code Used , , , , , , , , , , , , , , , , 411.0, 411.1, , , 412, 413.0, 413.1, 413.9, , , , , , , , , , 414.2, 414.3, 414.8, Coronry hert disese Included in ischemic hert disese MEPS c Included in coronry rtery disese NIS d Included in coronry rtery disese CMS e Included in coronry rtery disese Ischemic hert disese Checkox MEPS c Included in coronry rtery disese NIS d Included in coronry rtery disese CMS e Included in coronry rtery disese Crdic rrhythmis Crdic rrhythmis Hyperlipidemi Hyperlipidemi Checkox , 272.1, 272.2, 272.3, Stroke Stroke CMS e Cererovsculr disese (stroke or trnsient ischemic ttck) MEPS c Checkox Included in stroke NIS d Included in stroke Arthritis Arthritis 430, 431, , , , , , , , ,434.10, , , , 435.0, 435.1, 435.3, 435.8, 435.9, 436, Checkox 202, 203

12 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 12 of 16 OASH List of Chronic Nme of Condition in Dt Collection Dt Collection Term or Code Used 202, 203 Asthm Asthm 714.0, 714.1, 714.2, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 720.0, 721.0, 721.1, 721.2, 721.3, , Checkox , , , , , , , , , , , , , Autism spectrum disorder Autism 29900, , CMS e Cncer Cncer (ll except nonmelnom skin) Checkox Femle rest cncer: 174.0, 174.1, 174.2, 174.3, 174.4, 174.5, 174.6, 174.8, 174.9, 175.0, 175.9, 233.0, V10.3. Colorectl cncer: 154.0, 154.1, 153.0, 153.1, 153.2, 153.3, 153.4, 153.5, 153.6, 153.7, 153.8, 153.9, 230.3, 230.4, V Prostte cncer: 185, 233.4, V Lung cncer: 162.2, 162.3, 162.4, 162.5, 162.8, 162.9, 231.2, V Chronic kidney disese Chronic kidney disese Checkox for chronic renl filure , , , , , , , 095.4, 189.0, 189.9, 223.0, , , , , , , , 271.4, , , , , , , , , , , , 440.1, 442.1, 572.4, 580.0, 580.4, , , 580.9, 581.0, 581.1, 581.2, 581.3, , , 581.9, 582.0, 582.1, 582.2, 582.4, , , 582.9, 583.0, 583.1, 583.2, 583.4, 583.6, 583.7, , , 583.9, 584.5, 584.6, 584.7, 584.8, 584.9, 585, 585.1, 585.2, 585.3, 585.4, 585.5, 585.6, 585.9, 586, 587, 588.0, 588.1, , , 588.9, 591, , , , , , , , , , , , , 794.4

13 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 13 of 16 OASH List of Chronic Nme of Condition in Dt Collection Dt Collection Term or Code Used Chronic ostructive pulmonry disese Chronic ostructive pulmonry disese Checkox , 491.0, 491.1, , , , 491.8, 491.9, 492.0, 492.8, 494.0, 494.1, 496 Dementi (including Alzheimer s nd other senile dementis) Dementi Depression Depression 331.0, 331.1, , , 331.2, 331.7, 290.0, , , , , , , 290.3, , , , , 294.0, , , 294.8, 797 Checkox , , , , , , , , , , , , , , , , , , , , , , , , , , , , 298.0, 300.4, 309.1, 311 Dietes Dietes (ll nongesttionl) Checkox 49,50 49,50 Heptitis Heptitis , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 357.2, , , CMS e Humn immunodeficiency virus (HIV) HIV 5

14 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 14 of 16 OASH List of Chronic Nme of Condition in Dt Collection Dt Collection Term or Code Used 5 CMS e Osteoporosis Osteoporosis Checkox , , , , Schizophreni Schizophreni CMS e Sustnce use disorders (drug nd lcohol) Sustnce use CMS e Arevitions: OASH, Office of the Secretry of Helth, HHS, US Deprtment of Helth nd Humn Services;, Ntionl Helth Interview Survey;, Ntionl Amultory Medicl Cre Survey; MEPS, Medicl Expenditure Pnel Survey; NIS, Ntionwide Inptient Smple; CMS, Centers for Medicre nd Medicid Services; CCS, Clinicl Clssifiction Softwre; ICD, Interntionl Clssifiction of Diseses. The Ntionl Helth Informtion Survey is sed on self-report (24,25). The Ntionl Amultory Medicl Cre Survey uses checkox on medicl chrt strction checklist, which indictes tht the ptient hs the condition, regrdless of the reson for the visit (26,27). c Dt elements identified re from the household component of the Medicl Expenditure Pnel Survey, which uses CCS codes (28). d The Ntionwide Inptient Smple uses CCS codes from hospitl dischrge records (29 31). e The CMS Beneficiry Clims Dt File uses vlid ICD codes from Medicre clims dt (21). The complete coding lgorithm, including reference period, numer nd type of clims used, nd exclusions, is ville from Tle 4. Chrcteristics of Selected US Deprtment of Helth nd Humn Services Dt s Used for Studying nd Monitoring Chronic Chrcteristic Ntionl Amultory Medicl Cre Survey (26,27) Ntionl Helth Interview Survey () (24,25) Medicl Expenditure Pnel Survey Household Component (28) Ntionwide Inptient Smple (29 31) Centers for Medicre nd Medicid Services Beneficiry Clims Dt File (21) Opertor/owner Centers for Disese Control nd Prevention/Ntionl Center for Helth Sttistics Centers for Disese Control nd Prevention/Ntionl Center for Helth Sttistics Agency for Helthcre Reserch nd Qulity Agency for Helthcre Reserch nd Qulity Centers for Medicre nd Medicid Services

15 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 15 of 16 Chrcteristic Ntionl Amultory Medicl Cre Survey (26,27) Ntionl Helth Interview Survey () (24,25) Medicl Expenditure Pnel Survey Household Component (28) Ntionwide Inptient Smple (29 31) Centers for Medicre nd Medicid Services Beneficiry Clims Dt File (21) Smpling frme Primry cre providers Noninstitutionlized civilin popultion Households responding to Nonfederl shortterm sty hospitls Medicre eneficiries Smpling design Multistge proility of providers nd systemtic rndom smple of visits Multistge proility selection of households with 1 eligile (ge >17 y) respondent Susmple of prior yer households responding to with oversmpling of selected popultion sugroups Strtified rndom smple of hospitls in prticipting sttes, ll hospitliztions included from smpled hospitls NA Unit of nlysis Outptient visit Individul Individul Hospitliztion Individul Dt source Medicl chrt Self-report Household report of treted medicl conditions Condition dt ICD code/chrt notes Self-report ICD/CCS codes sed on recorded responses Dischrge summry ICD/CCS Clims ICD Other core dt elements Demogrphic chrcteristics, utiliztion, provider chrcteristics, economic Demogrphic chrcteristics, helth ehviors, disility, helth insurnce coverge, utiliztion Economic, utiliztion Economic, fcility, demogrphic, pyer Demogrphic chrcteristics, utiliztion Most recent yer dt ville Arevitions: NA, not pplicle; ICD, Interntionl Clssifiction of Diseses; CCS, Clinicl Clssifiction Softwre. Appendix. Selected HHS Helth Dt s for Studying Chronic Ntionl Helth Interview Survey (): Operted since 1957 nd now mintined y the Centers for Disese Control nd Prevention s (CDC s) Ntionl Center for Helth Sttistics, uses computer-ssisted personl household interviews to collect dt on rod rnge of helth topics (24,25). The is cross-sectionl household interview survey system tht uses multistge re proility smpling design. Eligile sujects re civilin noninstitutionlized persons residing in the United Sttes t the time of the interview. Dt collected include demogrphic chrcteristics, use of helth services, helth conditions nd moility limittions, self-reported helth sttus, nd ehviors (24,25). Ntionl Amultory Medicl Cre Survey (): Also operted nd mintined y CDC s Ntionl Center for Helth Sttistics, is designed to provide ntionl-level dt on the provision nd use of multory medicl cre services. The survey multistge proility design tht involves proility smples of primry smpling units (PSUs), physicin prctices within PSUs, nd ptient visits within prctices collects dt from smple of physicins who provide primry ptient cre in nonfederl, office-sed settings. For ech smpled physicin, systemtic rndom smple of visits during 1-week period is selected for systemtic strction; dt collected include demogrphic chrcteristics, dignoses (current nd existing), procedures, nd tretment plns (26,27).

16 Preventing Chronic Disese Defining nd Mesuring Chronic : Impertives... Pge 16 of 16 Medicl Expenditure Pnel Survey Household Component (MEPS-HC): MEPS-HC is n ongoing federl survey sponsored y the Agency for Helthcre Reserch nd Qulity tht cn e used to produce ntionl estimtes for the US civilin noninstitutionlized popultion. The survey collects dt from ntionlly representtive smple on helth sttus, demogrphic chrcteristics, employment, helthcre ccess, helthcre use, medicl expenditures, sources of pyment, nd insurnce coverge. The MEPS-HC uses n overlpping pnel design in which new smple pnel of households is selected ech yer from respondents to the previous yer s, nd dt from 2 concurrent pnels re comined to produce nnul dt. Five interviews re conducted with ech household t pproximtely 5-month intervls to gther 2 yers of longitudinl dt per pnel. Ech interview is conducted in person with 1 representtive from the household usully responding for ll fmily memers. Detiled dt re collected from the household respondent on helth cre events nd ssocited medicl conditions nd expenditures for ll household memers. Medicl condition dt re recorded vertim y interviewers nd professionlly coded into Interntionl Clssifiction of Diseses, 9th Revision, Clinicl Modifiction codes y certified stff (28). Ntionwide Inptient Smple (NIS): NIS is prt of the Helthcre Cost nd Utiliztion Project (HCUP) sponsored y the Agency for Helthcre Reserch nd Qulity. HCUP comprises group of helth cre dtses nd relted softwre tools tht were developed through prtnership with privte nd pulic stte-level dt collection orgniztions. The NIS is the lrgest pulicly ville ll-pyer inptient cre dtse. For ech yer, the NIS is designed to pproximte 20%-strtified smple of community hospitls nd contins dischrge dt for out 8 million hospitl stys from more thn 1,000 hospitls. Dt elements in this system include dignostic nd procedure codes, pyer informtion, ptient nd hospitl chrcteristics, chrges, nd length of sty. The dt re weighted to produce ntionl nd regionl estimtes of cre in US community hospitls (29 31). CMS Medicre dministrtive dt: This dt system, which is ville through the Centers for Medicre nd Medicid Services Chronic Condition Dt Wrehouse, includes 100% Medicre files for fee-for-service institutionl nd noninstitutionl clims, s well s enrollment nd eligiility dt. Informtion in this dt system includes demogrphic chrcteristics, chronic conditions, clim pyments, dignostic codes, nd procedure codes (21). The opinions expressed y uthors contriuting to this journl do not necessrily reflect the opinions of the U.S. Deprtment of Helth nd Humn Services, the Pulic Helth Service, the Centers for Disese Control nd Prevention, or the uthors' ffilited institutions. The RIS file formt is text file contining iliogrphic cittions. These files re est suited for import into iliogrphic mngement pplictions such s EndNote, Reference Mnger, nd ProCite. A free tril downlod is ville t ech ppliction s we site. For Questions Aout This Article Contct pcdeditor@cdc.gov Pge lst reviewed: April 25, 2013 Pge lst updted: April 25, 2013 Content source: Ntionl Center for Chronic Disese Prevention nd Helth Promotion Centers for Disese Control nd Prevention 1600 Clifton Rd. Atlnt, GA 30333, USA 800-CDC-INFO ( ) TTY: (888) Contct CDC INFO