Family Medicine Grand Rounds Rose Medical Center May 6, 2009 Elizabeth A. Bayliss, MD, MSPH

1. “I have…what is it called? Arthritis in the knees…I’m a diabetic and I take my warfarin, because I’m supposed to have a blood problem. …And since I had the double mastectomy I’ve ended up with … stomach problems, leg problems and everything else. I use a cane a good part of the time…because I never know when this silly knee might go out. I’ve had the cataract surgery and that just turned out beautifully. The first time I went out after I got them done I was absolutely flabbergasted by the beautiful colors that we have outdoors. I’m still working 40 hours a week. I love it. I love people and I can sit at a computer and I greet people… “I don’t like taking pills, but I’d rather take pills and stick around for awhile...as well as I am not bashful at all about coming to the doctors when I think I’ve got a problem…I’ve noticed that some things they tell me I cannot eat…The salads, which I dearly love, would be better for the diabetes but worse for the warfarin…if you’re going to live you have to learn to make exceptions to what you would prefer to do, which is eat chocolate covered donuts and that kind of stuff…I need to do exercises and even taking my dog for a walk is difficult because the knees hurt so bad …..So I get no exercise, which I know is important, but how can you do it when you can’t walk? “Whatever hurts the most is what is taken care of……the squeaky wheel gets the oil, so whatever…right now the knees are needing the oil. If the stomach starts acting up then it will get some attention. When the eyes get to where I have to have glasses changed they get the attention. But you just go with the flow, because when you reach this age you know lots of things are going to fall apart.”

2. Informing new models of care for persons with multiple chronic conditions: the patient's perspective Family Medicine Grand Rounds Rose Medical Center May 6, 2009 Elizabeth A. Bayliss, MD, MSPH Clinician Investigator, KPCO Assistant Clinical Professor, University of Colorado Denver School of Medicine

3. Acknowledgements Funding agencies: Agency for Healthcare Research and Quality 5 K08 HS015476-03 National Institute on Aging: 1 R2 1AG027064-01 AAFP Foundation NRSA Primary Care Research Fellowship Collaborators: John Steiner, Jennifer Ellis, Debbi Main, and others….

4. Objectives Recognize biopsychosocial factors that affect processes of care for persons with multiple chronic illnesses. Discuss care management strategies for this patient population. Discuss measuring morbidity with regard to different health outcomes

5. Outline Background Multimorbidity: the extent of the problem Traditional disease management model Studying patients’ perspectives: how they may change the model Barriers to self-management Preferred processes of care Quantifying morbidity Ideas for implementing change Recognizing complex patient populations Assessing priorities Integrating care

6. Multimorbidity: the extent of the problem Co-prevalence and/or shared pathophysiology 65% of those aged 65+ 85% of those aged 85+ By 2020 estimated to be 81 million 75% of health care spending (chronic dz)

7. Multimorbidity: ‘negative’ effects on quality of care • Competing demands: • COPD + comorbidities = fewer lipid-lowering meds • Schizophrenia + comorbidities = fewer antipsychotics • Each additional chronic disease = 17% lower chance of timely mammography • Decreased treatment intensification for hypertension and for diabetes (separately)

8. Multimorbidity: ‘positive’ effects on quality of care • Increased clinical contacts: • Cancer survivors + other conditions = more preventive services • Increased numbers of conditions = more disease-specific quality indicators

9. What constitutes high quality care for persons with multiple morbidities? • Traditional measures: disease-specific and quantifiable • New measures? • Patient-centered • Process-oriented • Currently poorly defined

10. Using patient-centered information to add to the traditional disease management model: Traditional disease management Single chronic conditions Disease-specific outcomes Patient-centered outcomes Multiple chronic conditions Alternate management strategies Process outcomes Which management strategies may improve care? How do we identify the patients? Which outcomes matter?

11. Outline Background Multimorbidity: the extent of the problem Traditional disease management model Studying patients’ perspectives: how they may change the model Assessing barriers to self-management Preferred processes of care Quantifying morbidity Ideas for implementing change Recognizing complex patient populations Assessing priorities Integrating care

12. Assessing barriers to self-care: How barriers may affect health outcomes: Patient with multiple medical conditions Health outcomes Self-management process + Patient resources and barriers Which barriers/ resources affect this process?

13. Assessing barriers to self-care: Initial qualitative interviews 16 respondents with 2+ chronic conditions Health status very good - poor ‘List everything that you can think of that affects your ability to care for your medical conditions.’ Sorting and categorization of responses

14. Interview results: reported barriers

15. Interview results: additional barriers Burden (schedule, number) and side effects of medications Lack of knowledge about conditions Financial constraints Low self-efficacy Inadequate provider communication Insufficient social support Logistical issues

16. Quantitative assessment of potential barriers: Research questions Do barriers to self-care affect: Self-reported health status? Physical well-being? Does total disease burden affect these same outcomes?

17. Telephone survey: • 352 seniors with diabetes, osteoarthritis, depression, + other conditions • Questions to quantify importance of domains elicited from interviews: • E.g. Health care expenses have made it difficult to pay for rent or utilities ( 1 – 5 likert scale: agree - disagree) • E.g. Having one condition makes it easier to care for another condition (negative scale)

18. Barriers associated with lower health status (adjusted, linear regression):

19. Barriers associated with lower physical well-being (adjusted, linear regression):

20. Barriers to self-care that independently affect quality of life for seniors with multiple morbidities: Physical functioning Financial constraints Adequate knowledge about conditions Social support/activity Depression Patient-clinician communication Compound effects of conditions

21. Adding to the traditional disease management model: Single chronic conditions Traditional disease management Disease-specific outcomes Patient-centered outcomes Multiple chronic conditions Alternate management strategies Process outcomes - Resource assessment - Depression screening - Functional abilities - Knowledge assessment - Others

22. Outline Background Multimorbidity: the extent of the problem Traditional disease management model Studying patients’ perspectives: how they may change the model Assessing barriers to self-management Preferred processes of care Quantifying morbidity Ideas for implementing change Recognizing complex patient populations Assessing priorities Integrating care

23. Exploring outcomes: processes of care desired by patients with multiple morbidities: • More interviews (when in doubt, talk to the patients…) • 26 seniors with 4 – 16 chronic conditions • Questions to explore preferred processes of care • E.g. If you could design the perfect system for patients with lots of medical problems, what would it look like?

24. Processes of care preferred by (these) patients:

25. Are some ‘processes’ really ‘outcomes’ for complex patients? Continuity of care Coordination of care Communication of care plans

26. Adding to the traditional disease management model: Single chronic conditions Traditional disease management Disease-specific outcomes Multiple chronic conditions Patient-centered outcomes Alternate management strategies Process outcomes • - Resource assessment • Depression screening • - Functional abilities • - Knowledge assessment • - Others • - Access • Continuity • - Communication • - Individualized care

27. Outline Background Multimorbidity: the extent of the problem Traditional disease management model Studying patients’ perspectives: how they may change the model Assessing barriers to self-management Preferred processes of care Quantifying morbidity Ideas for implementing change Recognizing complex patient populations Assessing priorities Integrating care

28. Describing disease burden: what are patients talking about? • Potential ways to measure an individual’s disease burden: • Problem list • Billing diagnoses (e.g. ICD-9 claims data) • Medication list • Ask them • subjective list—including severity

29. Different measurement methods will measure different components of outcomes Subjective outcomes, e.g. QOL Objective outcomes, e.g. cost effectiveness Both subjective and objective, e.g. disability, hospitalization Subjective measures Objective measures

30. Exploring self-reported morbidity: Disease Burden What are the biopsychosocial constructs expressed in self-report of morbidity? Are any of these also captured by other morbidity measures? (I.e. does self-report measure a unique aspect of morbidity?)

31. ‘Disease burden’: What it might measure Medical diagnoses Perceived severity of conditions Disease Burden Biopsychosocial constructs: E.g. Physical function, social support, mood Demographics

32. Disease burden instrument: Scoring: Sum of all responses—no ceiling—continuous outcome variable * 21 conditions listed

33. Analysis: Which factors ‘predict’ disease burden? Dataset from “barriers” study N = 352; persons with multiple morbidities Biopsychosocial factors (barriers and resources) as predictors of disease burden Do two other morbidity measures ‘add anything’ to biopsychosocial factors in predicting disease burden?

34. Distribution of disease burden scores 25 20 15 Number of People 10 5 0 1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 41 43 45 47 49 51 53 55 57 59 Disease burden score

35. Factors significantly associated with disease burden • Physical functioning • Financial constraints • Compound effects of conditions • Self-efficacy • Age group (65 – 74 vs. 75+) - - - - - - - - - - - - - - - - - - - - - - - - - - • Other measures • ICD-9 measure: not significant • Medication list measure: minimally significant

36. Self-reported disease burden consists of: • A complex amalgamation of • Functional capabilities • Social considerations • Medical conditions (and the interactions between them) • Not captured by two data-based morbidity indices

37. Adding to the traditional disease management model: Single chronic conditions Traditional disease management Disease-specific outcomes Patient-centered outcomes Multiple chronic conditions Alternate management strategies Process outcomes • - Resource assessment • Depression screening • - Functional abilities • - Knowledge assessment • - Others • Disease Burden • Diagnoses • - Access • Continuity • - Communication • - Individualized care

38. Summary: Informing care processes through patients’ perspectives Interpret morbidity: subjective vs. objective Assess potential barriers and resources as part of self-management support Pursue outcomes that matter to patients

39. Outline Background Multimorbidity: the extent of the problem Traditional disease management model Studying patients’ perspectives: how they may change the model Assessing barriers to self-management Preferred processes of care Quantifying morbidity Ideas for implementing change Recognizing complex patient populations Assessing priorities Integrating care

40. Using these perspectives to inform new processes of care: • Identification of populations with specific care needs (or lack of them) • Identify priorities (for patients, clinicians, systems) • Integrating care • Who needs what support? When? From whom?

41. Identifying subpopulations of complex patients Historically lumped as ‘high utilizers’ Likely require different approaches to care Not previously defined

42. Preliminary results: ‘High morbidity’ sub-populations in a 2-year historical cohort: Diabetes + anything Depression + comorbidities CHF Dialysis Recent cancer

43. Who needs which support when? Care management received by complex patients Listed in 2+ of 5 chronic disease registries (N=23,385) Outreach-based care management How much and which types of care management received?

44. Receipt of types of care management 2+ Encounters: 14,669 1 type of encounter 4,942 (34%) 3+ types of encounters 4,279 (29%) 2 types of encounters 5,448 (37%)

45. Adding to the traditional disease management model: Single chronic conditions Traditional disease management Disease-specific outcomes Patient-centered outcomes Multiple chronic conditions Alternate management strategies Process outcomes • - Resource assessment • Depression screening • - Functional abilities • - Knowledge assessment • Avoid duplication • Appropriate outreach Disease Burden Diagnoses : Diabetes, depression, renal disease, others • - Access • Continuity • - Communication • - Individualized care

46. Integrating care for complex patients Identify specific populations and specific needs Coordinate outreach efforts (if any) Assess subjective and objective burden Prioritize (jointly) Assess potential burdens and resources Define meaningful outcomes

48. Thank you