Appendix B

New Models of Comprehensive Health
Care for People with Chronic Conditions

Chad Boult, M.D., M.P.H., M.B.A.1
Erin K. Murphy, M.P.P.2

SUMMARY

This paper focuses on one of this report’s primary goals: “identifying which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability” for adults who have chronic illnesses. It has several goals:

• Identify new models of comprehensive health care that have been reported to improve the functional autonomy or overall quality of chronically ill people’s lives.

• Describe the goals, target populations, and operational features of these models.

• Recommend public health initiatives that would support the refinement and spread of the identified new models of comprehensive health care for chronically ill persons.

In composing this manuscript, we completed:

• Electronic searches of the scientific literature (1987–2011) to identify models of comprehensive health care that have produced significant

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1Professor of Public Health, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland.

2Doctoral Student, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland.



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Appendix B New Models of Comprehensive Health Care for People with Chronic Conditions Chad Boult, M.D., M.P.H., M.B.A.1 Erin K. Murphy, M.P.P.2 SUMMARY This paper focuses on one of this report’s primary goals: “identify- ing which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability” for adults who have chronic illnesses. It has several goals: • Identify new models of comprehensive health care that have been reported to improve the functional autonomy or overall quality of chronically ill people’s lives. • Describe the goals, target populations, and operational features of these models. • Recommend public health initiatives that would support the refine- ment and spread of the identified new models of comprehensive health care for chronically ill persons. In composing this manuscript, we completed: • Electronic searches of the scientific literature (1987–2011) to iden- tify models of comprehensive health care that have produced sig- 1 Professor of Public Health, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland. 2 Doctoral Student, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland. 285

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286 LIVING WELL WITH CHRONIC ILLNESS nificant improvements in the functional autonomy or quality of life of chronically ill persons. • Tabulation of the statistically significant findings of these studies and the models’ relationships to community-based services, such as whether medical and community-based services were coordinated or not. • Internet searches for reports posted between June 1, 2008, and June 30, 2011, to obtain information about other promising mod- els of chronic care, research about which has not yet been peer- reviewed or published in scientific journals. From among 15 models of comprehensive care that have been shown to improve life significantly for chronically ill persons, we identified 6 that integrate medical and community-based care: • Transitional care • Caregiver education and support • Chronic disease self-management • Interdisciplinary primary care • Care/case management • Geriatric evaluation and management In the future, other new models of comprehensive care may also be shown to improve functional autonomy and quality of life. Public health initiatives that seek to improve the functional autonomy and quality of life of persons with chronic conditions should: • Explore opportunities to collaborate with organizations that pay for (i.e., insurers) or participate in (i.e., providers) these six suc- cessful new models of comprehensive chronic care. • Use mass media to communicate public messages to chronically ill persons, their families, their health care providers and their local community agencies about the importance of integrating medical and community-based care. • Evaluate longitudinally the effects of collaborations between medical and community-based care providers on the functional autonomy and quality of life of Americans living with chronic conditions. INTRODUCTION Throughout 2011, the American baby boom generation began reaching age 65. The population ages 65 and older will swell to 40 million in 2011,

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287 APPENDIX B nearly 55 million by 2020, and more than 70 million by 2030 (CMS, 2009; IOM, 1978, 1987, 2001; Salsberg and Grover, 2006; Shea et al., 2008; U.S. Census Bureau, 2004; Wenger et al., 2003; Wolff et al., 2002). Many older persons, especially the “oldest old,” have chronic conditions and disability, so as the population of older Americans expands, the absolute number with chronic conditions and disability will also rise. Unless scientists make unprecedented breakthroughs in preventing or curing chronic conditions soon, the United States will face growing pandemics of chronic disease and disability throughout the next several decades. America’s providers of health care and supportive services have not yet developed the capacity to provide high-quality, comprehensive chronic care. Its hospitals, nursing homes, physicians, clinics, and community-based service agencies still operate as uncoordinated “silos” (IOM, 2001), much of the physician workforce is inadequately trained in chronic care (Salsberg and Grover, 2006), and the quality and efficiency of chronic care remain “far from optimal” (IOM, 2001; Salsberg and Grover, 2006; Wenger et al., 2003). In a recent study of health care in seven developed nations, the United States was first (by far) in health care spending but sixth in the qual- ity of care and last in care efficiency, equity, and access (tie). The United States was also last in enabling long, healthy, productive lives for its citizens (Davis et al., 2010). A successful, long-term, population-based approach to reducing the prevalence and the consequences of chronic illness in the United States would include (a) the primary prevention of chronic diseases, (b) secondary prevention by screening and treatment of preclinical chronic conditions, and (c) tertiary prevention of disability and suffering by effectively treating chronic conditions that are already clinically manifest. Primary preven- tive initiatives might seek to reduce the incidence of chronic conditions by altering social, cultural, and environmental influences on the population’s diet, physical activity, and exposure to toxins (e.g., tobacco) and infection (e.g., HIV/AIDS). Secondary and tertiary preventive initiatives would seek to treat chronic diseases promptly and effectively through the coordinated efforts of multiple health care providers and community-based supportive services. The ultimate goal of this paper is to identify opportunities for public health agencies to promote such coordination of “medical” and “social” resources to limit the functional and quality of life consequences often borne by Americans with chronic conditions. Two overlapping conceptual models help to explicate the complex interacting factors that must be addressed to control the effects of chronic disease in the U.S. population. Not only does the Chronic Care Model (Bodenheimer et al., 2002) focus mostly on improving the ability of the health care delivery system (and its patients and families) to treat chronic illnesses, but it also acknowledges the importance of integrating the deliv-

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288 LIVING WELL WITH CHRONIC ILLNESS Community Health System Health Care Organization Resources and Policies Clinical Self- Delivery Decision Information Management System Support Systems Support Design Informed, Productive Prepared, Activated Interactions Proactive Patients and Practice Team Families Improved Outcomes FIGURE B-1 Chronic Care Model. SOURCE: Reproduced with permission of Wolters Kluwer Law & Business from B-1.eps Wagner, E.H., et al. A survey of leading chronic disease management programs: Are they consistent with the literature? Managed Care Quarterly 7(3):58, 1999. ery system with community-based resources and policies. The Expanded Chronic Care Model (Barr et al., 2003) subsumes the Chronic Care Model, but it has a broader perspective. It illuminates the importance of reducing the occurrence of chronic conditions by addressing societal influences on diet, exercise, and other determinants of health. The original, more nar- rowly focused, Chronic Care Model is better aligned with the secondary and tertiary preventive orientation of this paper (Figure B-1). Methods To identify promising new models of comprehensive chronic care, we completed three processes: • MEDLINE searches of the scientific literature (1987–2011) to identify comprehensive models that have, in high-quality studies, produced significant improvements in the functional autonomy or quality of life of chronically ill persons. We considered a model to be comprehensive if it addresses multiple health-related needs of adults, that is, the model provides care for several chronic condi- tions, for several aspects of one condition, or for persons receiving care from several health care providers. We excluded models that

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289 APPENDIX B addressed a single treatment for one condition, such as innovations in conducting cataract surgery or managing one medication. We rated study designs as of high quality if they were clinical trials, randomized controlled trials, controlled clinical trials, systematic reviews, or meta-analyses. To cover this 24-year span, we extended two literature searches that we had conducted previously. The first, conducted in 2007, had identified promising models to help inform the Institute of Medicine’s 2008 recommendations for reshaping the U.S. workforce of health professionals to better care for the aging American population (IOM, 2008). The second, conducted in mid-2008, was an update of the 2007 search (Boult et al., 2009). For purposes of this report, we extended our previous searches to include information available through June 2011. • Tabulation of the statistically significant findings of these studies and the models’ relationships to community-based services (i.e., whether medical and community-based services were coordinated or not). Because of the considerable heterogeneity of target popula- tions and care processes included in the identified models—and the methods used to study them—we were not able to conduct meta- analyses or systematic reviews of the models’ positive and negative effects. • Internet searches for reports posted between June 1, 2008, and June 30, 2011, to obtain information about other promising mod- els of chronic care, research about which has not yet been peer- reviewed or published in scientific journals. PROMISING MODELS OF COMPREHENSIVE CHRONIC CARE Numerous new models of care for people with chronic conditions have been proposed, created, tested, and promoted in recent years. Some are primarily innovations in paying for care—such as capitated models, like Medicare Advantage and Special Needs Plans; shared savings mod- els, like accountable care organizations; and pay-for-performance models. Such financial models are designed to drive improvements in the delivery, quality, and outcomes of care, but they do not specify how care should be provided. Other new models are primarily innovations in the provision of care, many of which also require changes in payment in order to be finan- cially sustainable. Our searches and this report focus on the latter, that is, on new models of providing care for people with chronic health conditions, emphasizing those that credible scientific evidence suggests can improve patients’ qual- ity of life or functional autonomy. The following two sections describe 17 new models that address some or all components of the Chronic Care

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290 LIVING WELL WITH CHRONIC ILLNESS Model and appear promising. A brief description of each model outlines its goals, target population, methods of operation, and the currently available evidence of its effectiveness in improving quality of life and functional au- tonomy—as well as in reducing the use and cost of health services. Innova- tive models that reduce the cost of health care (or at least do not increase it) are inherently more likely than those that incur additional costs to be adopted widely in today’s cost-conscious environment. When appropriate, we note how these models incorporate community-based services. The first section (A) describes 15 new models in which credible scien- tific evidence published in peer-reviewed journals has shown statistically significant improvements in chronically ill patients’ functional autonomy or quality of life. A table that summarizes this evidence follows section A. The second section (B) describes new two new models that may improve functional autonomy or quality of life, but peer-reviewed evaluations of these outcomes are lacking. Section A: Comprehensive models of health care reported in peer-reviewed journals to produce statistically significant improvements in the quality of life or the functional autonomy of persons with chronic conditions. MEDLINE reviews of the scientific literature from January 1987 through June 2011 identified 15 successful models of comprehensive care for persons with chronic conditions (Models A-O in Table B-1). Nine of these models are based on either interdisciplinary primary care teams (Model A) or community-based supplemental health-related services that enhance traditional primary care (Models B-I). Three successful models address the challenges that accompany care transitions, including one that facilitates transitions from hospital to home (Model J) and two that provide acute care in patients’ homes, either in lieu of hospital care (Model K) or following brief hospital care (Model L). Three institution-based models have improved care for residents of nursing homes (Model M) and for patients in acute care hospitals (Models N and O). Note: Aside from meta-analyses and reviews, this paper summarizes only peer-reviewed studies that found that new models improved outcomes; it excludes “negative” studies. Thus, the evidence reported here should be construed primarily as preliminary findings, not as complete summaries of positive and negative studies of the models of care. Below we summarize the models’ goals, target populations, operations, and evidence of effectiveness in improving quality of life and functional autonomy—as well as in reducing the use and cost of health services. When appropriate, we note how these models incorporate community- based services.

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291 APPENDIX B Interdisciplinary Primary Care Models (Model A) Each of these models (e.g., IMPACT, Guided Care, GRACE, PACE and others) strives to enhance chronically ill patients’ functional autonomy and quality of life. In each, comprehensive care is provided by interdisciplin- ary teams composed of a primary care physician and one or more other co-located health care professionals, such as nurses, social workers, nurse practitioners, or rehabilitation therapists, who communicate regularly with each other. Many of these models coordinate medical care with supportive services provided by community-based agencies. A related, recently popularized model is the patient-centered medical home (PCMH), which targets all patients in a primary care practice, in- cluding those with and those without chronic conditions (Berenson et al., 2011). Using interdisciplinary teams and electronic information technology, medical homes provide: • Empanelment—each patient is assigned to a primary care provider who is responsible for that patient’s care over time. • Access—patients have access to health care 24/7/365 through same-day office visits and communication by telephone, email, and Internet. • Diagnostic, therapeutic, and preventive services for addressing most of its patients’ needs for acute and chronic health care. • Coordination of all providers of care, especially through transitions between sites of care. • Support for patient self-management of their health-related conditions. • Clinical decision making that incorporates patients’ goals, values, preferences, and culture. • Periodic review of patient records to identify patients at high risk and those with gaps in their care. • For high-risk patients, team-based comprehensive health assess- ment, evidence-based comprehensive care planning, proactive monitoring, transitional care, coordination of health care and com- munity services, and support for family caregivers. Although processes are available through which practices can be recognized as medical homes (e.g., the National Committee for Quality Assurance’s PPC-PCMH recognition, levels 1-3), there is considerable het- erogeneity among medical homes. For example, some medical homes are self-contained, that is, all staff members are co-located at the primary care practice, whereas others involve collaboration between practice and staff members who are located in community-based agencies. Two empirical

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292 LIVING WELL WITH CHRONIC ILLNESS studies of medical homes have undergone peer review and have been pub- lished in credible scientific journals; both were conducted in medical homes in which the health care teams were co-located in primary care practices. Obviously, studies of the effects of one type of medical homes may not ap- ply to other types. As shown in the table, most interdisciplinary primary care models have improved patients’ quality of life and functional autonomy. Some types of teams have significantly reduced patients’ use of selected health services. For most of these models, however, the available evidence of success is limited to a single randomized trial. Only teams focused on heart failure have improved patients’ survival and have been evaluated in enough studies to allow a meta-analysis, which reported significant reductions in hospital admissions and total health care cost (Arean et al., 2005; Battersby et al., 2007; Beck et al., 1997; Bernabei et al., 1998; Boult et al., 2008, 2011; Boyd et al., 2008, 2010; Callahan et al., 2006; Chavannes et al., 2009; Counsell et al., 2007, 2009; Fann et al., 2009; Gilfillan et al., 2010; Hughes et al., 2000; Kane et al., 2006; Khunti et al., 2007; McAlister et al., 2004; Rabow et al., 2004; Reid et al., 2010; Rosemann et al., 2007; Sylvia et al., 2008; Unützer et al., 2002, 2008; van Orden et al., 2009; Windham et al., 2003; Yu et al., 2006). Care/Case Management (Model B) The overarching goal of care management (CM) programs is to im- prove the efficiency of health care by optimizing chronically ill patients’ use of medical services. In most CM programs, a nurse or a social worker works as a care manager to help chronically ill patients and their families assess problems, communicate with health care providers, and navigate the health care system. The degree to which care managers coordinate patients’ medical care with community-based supportive services varies from pro- gram to program. Care managers are usually employees of health insurers or capitated health care provider organizations. CM has been shown fairly consistently to improve patients’ quality of life, less so their functional au- tonomy. Its effects on the use and cost of health services are mixed (Alkema et al., 2007; Anttila et al., 2000; de la Porte et al., 2007; Ducharme et al., 2005; Gagnon et al., 1999; Inglis et al., 2006; Kane et al., 2004b; Markle- Reid et al., 2006; Martin et al., 2004; Ojeda et al., 2005; Peters-Klimm et al., 2010; Rea et al., 2004; Vickrey et al., 2006). Disease Management (Model C) Disease management (DM) programs attempt to improve the qual- ity and outcomes of health care for people who have a particular chronic

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293 APPENDIX B condition (e.g., diabetes, heart failure). DM programs (now often called population management programs) supplement primary care by provid- ing patients with support and information about their chronic conditions, either in writing or by telephone. Health insurers or capitated provider organizations contract with DM companies that employ nurses or other trained technicians to provide patients with health education and instruc- tions for self-monitoring, following treatment guidelines, and participating in medical encounters. Few DM programs engage community-based ser- vices. One review that examined DM for heart failure, coronary disease, and diabetes reported no significant effect on any of the relevant outcomes. A meta-analysis of heart failure programs, however, reported that DM was associated with significantly fewer hospital admissions. A subsequent randomized controlled trial (RCT) found that DM for chronic obstructive pulmonary disease (COPD) patients was associated with better quality of care, better quality of life, improved COPD-related survival, and a shift from unscheduled to scheduled visits to physicians. Another RCT showed significant improvements in the quality of life and functional autonomy, as well as reduced use of hospitals by patients with angina (Holtz-Eakin, 2004; Sridhar et al., 2008; Whellan et al., 2005; Woodend et al., 2008). Preventive Home Visits (Model D) Preventive home visits are multidimensional, in-home assessments of older people performed by nurses, physicians, or other visitors that generate recommendations to primary care providers. Their goals are to improve the treatment of existing health problems, to prevent new ones, and thereby to enhance patients’ quality of life and functional autonomy. Some of these programs integrate community-based supportive services with medical ser- vices, whereas others focus entirely on medical care. Meta-analyses have found that these programs can reduce disability, mortality, and nursing home admissions, especially when they target relatively healthy “young- old” persons, include a clinical examination with the initial assessment, or offer extended follow-up. The heterogeneity of the programs and popula- tions studied creates considerable uncertainty about the generalizability of these results (Elkan et al., 2001; Huss et al., 2008; Stuck et al., 2002). Outpatient Comprehensive Geriatric Assessment (CGA) and Geriatric Evaluation and Management (GEM) (Model E) Outpatient CGA and GEM are supplemental services designed to im- prove the quality of life and functional autonomy of high-risk older persons. CGA and GEM programs are usually staffed by interdisciplinary teams of physicians, nurses, social workers, and, in some programs, also by reha-

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294 LIVING WELL WITH CHRONIC ILLNESS bilitation therapists, pharmacists, dieticians, psychologists, or clergy. Most programs are sponsored by hospitals, academic health centers, or capitated health care provider organizations, such as the Veterans Administration. The programs identify the patient’s health conditions, develop treatment plans for those conditions, and (in GEM) implement the treatment plans over weeks to months. They obtain information from and communicate their findings and recommendations to their patients’ established primary care providers, and they include community-based supportive services in their plans and recommendations. In about half the RCTs that measured patients’ quality of life and functional autonomy, outpatient GEM im- proved these outcomes. However, outpatient GEM does not consistently reduce the use or the cost of health care services (Boult et al., 2001; Burns et al., 2000; Caplan et al., 2004; Cohen et al., 2002; Epstein et al., 1990; Keeler et al., 1999; Nikolaus et al., 1999; Phibbs et al., 2006; Reuben et al., 1999a; Rubenstein et al., 2007; Rubin et al., 1993; Silverman et al., 1995; Toseland et al., 1996). Pharmaceutical Care (Model F) Pharmaceutical care is advice about medications provided by phar- macists to patients or interdisciplinary care teams. Pharmaceutical care programs aim to improve the use of medications and thereby to improve patients’ health. Depending on the program, pharmacists’ recommendations may be focused on a site of care (e.g., nursing home, patient’s home), on a specific disease (e.g., heart failure, hypertension), or on specific patient profiles (e.g., patients receiving GEM, patients taking several medications). Such programs have been shown to improve appropriate prescribing, medi- cation adherence, disease-specific outcomes, and, in some cases, survival. Quality of life has not been improved consistently, but some programs have reduced the use of hospitals (Crotty et al., 2004; Gattis et al., 1999; Lee et al., 2006; López et al., 2006; Spinewine et al., 2007; Wu et al., 2006) Chronic Disease Self-Management (Model G) Chronic disease self-management (CDSM) programs are structured, time-limited interventions designed to provide health information and em- power patients to assume an active role in managing their chronic condi- tions, often through the use of community-based services. Their ultimate goal is to improve patients’ quality of life and functional independence. Some programs, led by health professionals, focus on managing a specific condition, such as stroke, whereas others, led by trained lay persons, are aimed at addressing chronic conditions more generically. Most are spon- sored by health insurers or community agencies; they communicate with

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295 APPENDIX B primary care providers primarily through their clients. Numerous random- ized controlled trials and a meta-analysis report that CDSM leads to better quality of life and greater functional autonomy. Several studies also report that CDSM reduces the use and cost of health services (Chodosh et al., 2005; Clark et al., 1992, 2000; Fu et al., 2003; Hughes et al., 2004; Janz et al., 1999; Leveille et al., 1998; Lorig et al., 1999; Maly et al., 1999; Swerissen et al., 2006; Wheeler et al., 2003). Proactive Rehabilitation (Model H) Proactive rehabilitation is a relatively new supplement to primary care in which rehabilitation therapists provide outpatient assessments and in- terventions designed to help physically disabled older persons to maximize their functional autonomy, quality of life, and safety at home. The few stud- ies that have evaluated this intervention have consistently shown beneficial effects on physical function. In a quasi-experimental study, subjects receiv- ing home restorative care had a significantly greater likelihood of remaining at home. Reductions in hospital, emergency department, or home care use have occurred less consistently (Gill et al., 2002; Gitlin et al., 2006a, 2006b; Griffiths et al., 2000; Mann et al., 1999; Tinetti et al., 2002). Caregiver Education and Support (Model I) Caregiver education and support programs are designed to help infor- mal/family caregivers to enhance the well-being of their loved ones with chronic conditions. Led by psychologists, social workers, or rehabilitation therapists, these programs provide varying combinations of health informa- tion, training, access to professional and community resources, emotional support, counseling, and information about coping strategies. There is strong evidence, both in randomized studies and in two meta-analyses, that programs that support the caregivers of patients with dementia de- lay nursing home placement significantly, particularly programs that are structured and intensive. Similarly, all three studies, including one meta- analysis, that examined the effect of caregiver programs on patients’ quality of life showed significant benefit (Brodaty et al., 2003; Kalra et al., 2004; Mittelman et al., 2006; Patel et al., 2004; Pinquart and Sörensen, 2006; Teri et al., 2003). Transitional Care (Model J) Most transitional care programs are designed to facilitate smoother and safer patient transitions from a hospital to another site of care (e.g., another health care setting, home), ultimately resulting in fewer readmissions to

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