Patient Centered Research for the Complex Patient: Older adults with multiple and complex conditions. Mary Tinetti ECRI November, 2014

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1 Patient Centered Research for the Complex Patient: Older adults with multiple and complex conditions Mary Tinetti ECRI November, 2014

2 Objectives Describe current care for persons with multiple and complex conditions Describe current state of research for persons with multiple and complex conditions Suggest where we need to go in research for persons with multiple and complex conditions

3 Mr. T 83 year old man who complains of fatigue, decreased appetite, and weakness; feels burdened by his health care tasks

4 Mr. T: Multiple conditions requiring 14 guidelinerecommended medications Prior MI Diabetes Hypertension Depression Heart failure Atrial fibrillation Osteoporosis Chronic kidney disease COPD Peptic ulcer disease

5 Mr. T s Evidence-based Guideline Treatments Cardiologist: Increase β blocker, warfarin, diuretic, statin get a defibrillator Endocrinologist: Start insulin Nephrologist: start dialysis soon Psychiatrist: Decrease β blocker, add another antidepressant Gastroenterologist:Stop warfarin Disease outcomes Monitor BP and HR; avoid stroke, MI, re hospitalization for heart failure, GI bleed; improve depression

6 Mr. T now complains of: fatigue, appetite, weakness, AND confusion, frustration

7 Mr. T complains of fatigue, appetite, and weakness to his primary care provider Diagnosis: Too many medications, procedures (and doctors) What s good for each of his diseases may not be good for him What does Mr. T want and how do we help him get it?

8 Is Mr T an outlier? 18,500,000 (37%) Medicare beneficiaries with 4+ chronic conditions consume 74% of Medicare budget (CMS, 2012) All adults: Majority of health care used by those with 2 conditions (Anderson G, RWJF.org) Multiple conditions is the norm; single disease is the outlier

9 What is the problem/situation? Older adults with multiple and complex conditions receive a lot of care fragmented across providers and settings each clinician focuses on subset of patient s conditions often of unclear benefit not always targeted at what matters to patients

10 The care is fragmented For patients: see average of 7 MDs /year, focus on individual conditions For providers: Typical 1 care clinician coordinates care with 229 providers. Pham, Ann Inter Med, 2009

11 The care is of uncertain benefit Excluded from RCTs: Medicare beneficiaries vs. participants 74.7 years vs years old 42 % vs. 75% male 0% vs. 60% non-us residents Participants healthier than clinical Dhruva, Arch Intern Med, 2008 With multiple conditions: what outcome defines benefit?

12 The care is of potential harm 20% receive 1 guideline medication that may harm coexisting condition Lorgunpai, Tinetti, PLoS ONE,2014 Risk of adverse drug effect 10% per drug; ~100% with 10+ drugs Gandhi, NEJM, 2003

13 Care may not align with what matters most to patients Disease specific outcomes may not measure what matters most Agree on set of important (universal, cross disease) health outcomes Vary in their health outcome goals and treatment preferences (acceptable care burden) Fried TR, Arch Intern Med, 2011; Patient Educ Couns, 2010; J Am Geriatr Soc, 2008

14 Older adults with multiple conditions vary in what matters most when faced with tradeoff Maintain function: 42% Relief of pain or other symptoms: 32% Keep alive: 27% Fried TR, Arch Intern Med, 2011; Patient Educ Couns, 2010; J Am Geriatr Soc, 2008

15 Who s fault is it? Patients who demand ineffective care? Specialists who offer unnecessary care Health systems and payers who don t support time to discuss options & coordinate care Government that imposes disease-specific quality metrics Researchers don t study complex populations or questions

16 This fragmented care burdensome, costly and frustrating For patients and caregivers For clinicians For health systems For payers

17 Where to we need to go in research and practice

18 CaRe Align Collaboration (Hartford Foundation & PCORI) Patients, caregivers, clinicians, national organizations (e.g. ACP, AAFP, ACC, ASCO, AAN, AANP, CAN, PFCCpartners), health systems, payers

19 What patients & caregivers said re research & practice Patient defines what is a bad outcome Care based on their health outcome goals and acceptable care burden Single point of contact; who should I call Everybody needs a somebody to coordinate their care Open access to EHR Goal driven EHR and care

20 What PCPs & specialists said re research & practice Incentives (financial and nonfinancial) that support complex care Embedded care manager Primary/Specialty compacts (clear roles and responsibilities; framework for communication) Smaller networks of providers Quality metrics that are patient, not disease oriented Evidence of what works in this population

21 What health systems leaders said re research & practice Need to learn how to provide care more efficiently and cost effectively Don t know how to do that for this population Do not want to add staff, rather change what staff do

22 Two moves toward aligning research to meet needs of patients with complex conditions

23 A Move from Disease outcome centered research TO Patient outcome centered research

24 Universal health outcomes meaningful to patients Functional as possible (physical, cognitive, psychological, social) Free of symptoms/ impairments as possible (e.g. pain, fatigue) Live as long as possible (survival)

25 Association between chronic conditions and universal health outcomes Condition Function Universal Health Outcome Symptom burden Survival Arthritis COPD Dementia Depression Heart failure Tinetti et al. J Am Geriatr Soc, 2011

26 Research for persons with multiple & complex conditions Patient Goals, Preferences Life context Evidence & Guidelines Clinical decisions & research should be based on intersect. K. Stange et al. AnnFamMed, 2014

27 Where we need to go in research for persons with multiple and complex conditions Multiple stakeholders (patients, caregivers, clinicians) members of research team Universal outcomes, especially patient-reported Incorporate patient goals, preferences, context into the research Measure burden of intervention as well as benefit Sufficient sample size to look at key subgroups

28 Promising movement in the right direction NIH: HMO Research Network OAICs AGING ; PROMIS- universal health outcome porfolio AHRQ- Multiple Chronic conditions research portfolio PCORI patient-centeredness, patient-reported outcomes, CaRE-Align Collaboration planning grant CMS, NCQA, NQF- moving away from disease- to patient-based metrics

29 Mr T. Patient Goal-directed Care Ascertain his goals & preferences: Fewer symptoms & better function not life prolongation Goal directed care: Reduce or stop several medications Eliminate dietary restrictions No defibrillator Try dialysis but stop if symptoms & function don t improve Integrate decision making across his physicians with 1 in charge