Chronic Care, Chronic Disease Care, and Primary Care: One and the Same, or Different?

1. Chronic Care, Chronic Disease Care, and Primary Care: One and the Same, or Different? Barbara Starfield, MD, MPH Bellagio, Italy April 2008

2. The purpose of this presentation is to explore the concepts of “disease” and “chronic disease” and to show why a more appropriate focus is on a continuum of care (“primary care”) for all people and populations rather than on care for targeted diseases. Starfield 03/08 D 3978

3. The IOM report, Crossing the Quality Chasm, urges selecting priority conditions for attention to the quality of care. The list from which they should be chosen includes cancer, diabetes, emphysema, high cholesterol, HIV/AIDS, hypertension, ischemic heart disease, stroke, and perhaps also arthritis, asthma, gall bladder disease, stomach ulcers, back problems, Alzheimers, depression, anxiety disorders. Why aren’t undernutrition, occupational diseases, osteoporosis, low birth weight and prematurity, or virtually any childhood disorder (except asthma) considered high priority? Who should decide what a priority disease is? The disease experts? Starfield 02/08 D 3948

4. Diseases are professional constructs can be and are artificially created to suit special interests; the sum of deaths attributed to diseases exceeds the number of deaths do not exist in isolation from other diseases and are, therefore, not an independent representation of illness are but one manifestation of ill health Sources: Chin. The AIDS Pandemic: the Collision of Epidemiology with Political Correctness. Radcliffe Publishing, 2007. De Maeseneer et al. Primary Health Care as a Strategy for Achieving Equitable Care: a Literature Review Commissioned by the Health Systems Knowledge Network. WHO Health Systems Knowledge Network, 2007. Available at: http://www.wits.ac.za/chp/kn/De%20Maeseneer%202007%20PHC%20as%20strategy.pdf. Mangin et al, BMJ 2007; 335:285-7. Murray et al, BMJ 2004; 329:1096-1100. Tinetti & Fried, Am J Med 2004; 116:179-85. Walker et al, Lancet 2007; 369:956-63. Starfield 08/07 D 3831

5. Are diseases really discrete categorizations of pathology? Starfield 03/08 D 3979

6. There appear to be many disorders included under the rubric of diabetes: insulin secretion; insulin transport; zinc-binding to insulin; and pancreatic islet beta cell development. IS DIABETES A DISEASE? DOES IT MAKE SENSE TO ASSUME THAT GUIDELINES FOR THE IDENTIFICATION AND MANAGEMENT OF DIABETES APPLY TO ALL “DIABETICS”? Starfield 03/08 D 3980 Source: Topol et al, JAMA 2007; 298:218-21.

7. In a relatively small-scale study, diabetics who have weight loss are five times more likely to have their diabetes disappear than diabetics who have standard diabetes care. Questions:  Is diabetes a “chronic disease”? Is it a disease? Starfield 02/08 D 3940 Source: Dixon et al, JAMA 2008; 299:316-23.

8. If the association between obesity and diabetes is absent in people with low concentrations of persistent organic pollutants, and the association becomes stronger as the concentration of these pollutants rises, is obesity a risk factor for diabetes? Is diabetes a single disease? Starfield 02/08 D 3944 Source: Jones et al, Lancet 2008; 371:287-8.

9. If three diabetics per one thousand per year die from the implementation of supposedly evidence-based treatment, is diabetes a single disease? Source: Kolata G. Diabetes study partially halted after deaths. Seattle, WA: University of Washington press release, February 2, 2008. Starfield 02/08 D 3946

10. There is broad variation in breast cancer risk among carriers of BRCA1 and BRCA2 mutations. Question: Is BRCA1 and BRCA2-related breast cancer a disease? Source: Begg CB, Haile RW, Borg A et al. Variation of breast cancer risk among BRCA1/2 carriers. JAMA 2008; 299(2):194-201. Starfield 02/08 D 3939

11. If a 90-year-old woman dies two months following hip fracture, did she die from an acute disease or a chronic disease? What is the “cause of death” likely to be coded as? Starfield 02/08 D 3943

12. If oral contraceptives are protective on epithelial and non-epithelial cervical cancer but not on mucinous cervical cancer, is cervical cancer a single disease? Starfield 02/08 D 3945 Source: Franco & Duarte-Franco, Lancet 2008; 371:277-8.

13. COPD is a chronic systemic inflammatory syndrome with complex chronic co-morbidities. Patients with COPD mainly die of non-respiratory disorders such as cardiovascular disease or cancer. COPD is a heterogeneous disease process. Although exacerbations of COPD, especially those defined as being infectious, are quite frequent, the number of randomized placebo-controlled trials of antibiotics is surprisingly small. Starfield 10/07 D 3907 Sources: Fabbri & Rabe, Lancet 2007; 370:797-9. Calverley & Rennard, Lancet 2007; 370:774-85.

14. When occurring in the same individual, BMI greater than 30, systolic blood pressure greater than 140, and blood cholesterol greater that 250 mg/dL are associated with a six-fold increased odds of Alzheimers disease. What type of disease is Alzheimers? What is the disease? Starfield 03/08 D 3981 Source: Michel et al, JAMA 2008; 299:688-90.

15. Hypothyroidism is three times more likely in women with rheumatoid arthritis than in the general population. Women with both conditions have a fourfold higher risk of cardiovascular disease than euthyroid women with arthritis, independent of conventional risk factors. Inflammation and autoimmunity are implicated in vulnerability to a wide variety of “chronic” diseases – and they may well be “acute”. Starfield 03/08 D 3982 Source: Raterman et al, Ann Rheum Dis 2008; 67:229-32.

16. What Is a Chronic Disease? Generally defined as persistence or recurrence, usually beyond one year Starfield 10/06 D 3459

17. Chronic Disease: Expanded Definition Incurable Complex “causation” Multiple risk factors Long latency Prolonged course Associated with functional impairment or disability Starfield 05/07 D 3710 Source: Australian Institute of Health and Welfare. Indicators for Chronic Diseases and Their Determinants, 2008. Canberra, Australia: AIHW, 2008.

18. How “chronic” are chronic diseases? Starfield 10/07 D 3888

19. Persistence of Diagnoses* *per 1000, not adjusted for age Starfield 04/02 02-067 Starfield 09/07 D 3860 n

20. Persistence of Diagnoses* *per 1000, not adjusted for age Starfield 04/02 02-066 Starfield 09/07 D 3861 n

21. Persistence of Diagnoses* *per 1000, not adjusted for age Starfield 04/02 02-065 Starfield 09/07 D 3862 n

22. Not all chronic diseases are manifested year to year. Acute diseases sometimes behave as if they were chronic, recurring year to year. Only a minority of common chronic diseases or conditions are currently candidates for the vast majority of chronic disease management programs. Acute and chronic conditions share a characteristic: inflammation. Starfield 08/06 D 3435

23. People and populations differ in their overall vulnerability and resistance to threats to health. Some have more than their share of illness, and some have less. Morbidity mix (sometimes called case-mix) describes this clustering of ill health in patients and populations. Starfield 03/06 CM 3372

24. Influences on the Health of Individuals PHYSIOLOGICAL STATE MATERIAL RESOURCES SOCIAL RESOURCES BEHAVIORS CHRONIC STRESS HEALTH SERVICES RECEIVED OCCUPATIONAL & ENVIRONMENTAL EXPOSURES SOCIODEMOGRAPHIC CHARACTERISTICS DEVELOPMENTAL HEALTH DISADVANTAGE WEALTH: LEVEL & DISTRIBUTION** POLITICAL AND POLICY CONTEXT HEALTH* POWER RELATIONSHIPS BEHAVIORAL & CULTURAL CHARACTERISTICS GENETIC & BIOLOGICAL CHARACTERISTICS HEALTH SYSTEM CHARACTERISTICS *“Health” has two aspects: occurrence (incidence) and intensity (severity). **Including income inequality For influences at the community level, there is a spectrum from those that are aggregations from individual-level data to those that are ecological in nature. Source: Starfield, Soc Sci Med 2007; 64:1355-62. Starfield 04/07 IH 3637

25. Influences on Health Equity EQUITY IN HEALTH* AVERAGE HEALTH* ENVIRONMENTAL CHARACTERISTICS OCCUPATIONAL & ENVIRONMENTAL POLICY WEALTH: LEVEL & DISTRIBUTION** HISTORICAL HEALTH DISADVANTAGE SOCIAL POLICY ECONOMIC POLICY POWER RELATIONSHIPS*** POLITICAL CONTEXT BEHAVIORAL & CULTURAL CHARACTERISTICS HEALTH POLICY DEMOGRAPHIC STRUCTURE HEALTH SYSTEM CHARACTERISTICS Dashed lines indicate the existence of pathways through individual-level characteristics that most proximally influence health. For influences at the community level, there is a spectrum from those that are aggregations from individual-level data to those that are ecological in nature. *“Health” has two aspects: occurrence (incidence) and intensity (severity). **Including income inequality Starfield 04/07 IH 3638 ***Including social cohesion Source: Starfield, Soc Sci Med 2007; 64:1355-62.

26. IH 3789 n Penetrance Cause A Cause B Cause C No Dis-ease Pleiotropism Cause A Dis-ease 1 Dis-ease 2 Dis-ease 3 Etiologic Heterogeneity Cause A Cause B Cause C Dis-ease 1 Starfield 07/07 IH 3789 n

27. Etiologic Heterogeneity # of different conventional risk factors Starfield 03/08 IH 3983 Source: Australian Institute of Health and Welfare. Indicators for Chronic Diseases and Their Determinants, 2008. Canberra, Australia: AIHW, 2008.

28. Pleiotropism # of specific diseases associated with selected risk factors Starfield 03/08 IH 3984 Source: Australian Institute of Health and Welfare. Indicators for Chronic Diseases and Their Determinants, 2008. Canberra, Australia: AIHW, 2008.

29. There is more variability in disease manifestations and persistence within diseases than across diseases because: diseases are not necessarily unique pathophysiological entities variability in diagnostic styles and practices presence of co-morbidity Starfield 10/01 D 3887

30. Co- and Multi-morbidity(Morbidity Burden) Starfield 09/07 CM 3864 n

31. Co-morbidity is the concurrent existence of one or more unrelated conditions in an individual with any given condition. Multi-morbidity is the co-occurrence of biologically unrelated illnesses. For convenience and by common terminology, we use co-morbidity to represent both co- and multi-morbidity. Starfield 03/06 CM 3375

32. Distribution of Morbidity in a Non-Elderly Insured Population: 1 Year Experience (US) Starfield 09/00 00-058 Starfield 09/07 CM 3865 n Source: HMO health plan with 500K members.

33. Morbidity Burdens of Socially Disadvantaged and Socially Advantaged People Starfield 09/07 CM 3866 n

34. The high frequency of Co-morbidity Multi-morbidity Morbidity burden makes it inappropriate to focus on single diseases Starfield 03/08 CM 3985

35. Co-morbidity, Inpatient Hospitalization, Avoidable Events, and Costs* Source: Wolff et al, Arch Intern Med 2002; 162:2269-76. Starfield 11/06 CM 3503 n *ages 65+, chronic conditions only

36. The greater the morbidity burden, the greater the persistence of any given diagnosis. That is, with high co-morbidity, even acute diseases are more likely to persist. Starfield 08/06 CM 3439

37. Odds Ratios and Confidence Intervals for Persistence* by Degree of Co-morbidity: Urinary Tract Infection Degree of co-morbidity Starfield 10/03 03-346 Starfield 09/07 D 3863 n C Statistic .633 *controlled for age and sex

38. Expected Resource Use (Relative to Adult Population Average) by Level of Co-Morbidity, British Columbia, 1997-98 Thus, it is co-morbidity, rather than presence or impact of chronic conditions, that generates resource use. Source: Broemeling et al. Chronic Conditions and Co-morbidity among Residents of British Columbia. Vancouver, BC: University of British Columbia, 2005. Starfield 09/07 CM 3867 n

39. Increase in Treated Prevalence: Selected Conditions, US, People with Private Insurance, 1987-2002 Treated Prevalence Percentage Change, 1987-2002 Hyperlipidemia 437 (Heart disease 9) Bone disorders 227 Upper GI problems 169 Cerebrovascular disease 161 Mental problems 136 Diabetes 64 Endocrine disorders 24 Hypertension 17 Bronchitis 13 Starfield 09/06 D 3858 Source: Thorp et al, Health Affairs 2005; W5:317-25, 2005.

40. As thresholds for diagnosing disease are lowered over time, the variability within “diseases” will increase even further, as will the prevalence of multiple simultaneous or sequential diseases. Starfield 03/08 D 3986

41. What is needed is person-focused care over time, NOT disease-focused care. Starfield 10/06 PC 3462

42. Top Ten Health Conditions and Impact on Costs Starfield 03/08 D 3994 Source: Loeppke et al, J Occup Environ Med 2007; 49:712-21.

43. When people (not diseases) are the focus of attention Outcomes are better Side effects are fewer Costs are lower Population health is greater Starfield 09/07 PC 3868 n Source: Starfield et al, Health Aff 2005; W5:97-107.

44. What Is the Appropriate Care Model? Primary care that meets primary care (not disease-specific) standards* Specialty referrals that are appropriate, i.e., evidence-based** Specialty care that meets specialty care standards** *exist **do not exist Starfield 03/06 PC 3377

45. Primary care “works” because it has defined functions that include structural and process features of health services that are known to improve outcomes of care. Starfield 03/08 PC 3987

46. The Health Services System Personnel Facilities and equipment Range of services Organization Management and amenities Continuity/information systems Accessibility Financing Population eligible Governance CAPACITY Cultural and behavioral characteristics Provision of care Problem recognition Diagnosis Management Reassessment PERFORMANCE People/practitioner interface Receipt of care Utilization Acceptance and satisfaction Understanding Concordance Social, political, economic, and physical environments HEALTH STATUS (outcome) Longevity Comfort Perceived well-being Disease Achievement Risks Resilience Biologic endowment and prior health Source: Starfield. Primary Care: Balancing Health Needs, Services, and Technology. Oxford U. Press, 1998. Starfield 1997 HS 1064 Starfield 1997 97-103

47. Primary Care Starfield 02/08 EVAL 3968

48. Structural and Process Elements of the Essential Features of Primary Care Capacity Essential Features Performance First-contact Accessibility Eligible population Range of services Continuity Utilization Person-focused relationship Longitudinality Comprehensiveness Problem recognition Coordination Starfield 04/97 EVAL 1108 Starfield 1997 97-194

49. Primary Care Oriented Health Services Systems Personnel Facilities and equipment Range of services Organization Management and amenities Continuity/information systems Accessibility Financing Population eligible Governance CAPACITY Cultural and behavioral characteristics Provision of care Problem recognition Diagnosis Management Reassessment PERFORMANCE People/practitioner interface Receipt of care Utilization Acceptance and satisfaction Understanding Concordance Social, political, economic, and physical environments HEALTH STATUS (outcome) Longevity Comfort Perceived well-being Morbidity burden Achievement Risks Resilience Biologic endowment and prior health Source: Starfield. Primary Care: Balancing Health Needs, Services, and Technology. Oxford U. Press, 1998. Starfield 10/07 HS 3890

50. There is no formal quality assessment approach that includes the critical feature of problem-recognition, despite the evidence that patients are more likely to improve when they and their practitioner agree on what their problem is. Sources: Starfield et al, JAMA 1979; 242:344-46. Starfield et al, Am J Public Health 1981; 71:127-31. Starfield 03/08 Q 3988