Disease management is defined as "a system of coordinated healthcare interventions and communications for populations with conditions in which patient self-care efforts are significant." [1] [2] [3]
For people who can access health care practitioners or peer support it is the process whereby persons with long-term conditions (and often family/friend/carer) share knowledge, responsibility and care plans with healthcare practitioners and/or peers. To be effective it requires whole system implementation with community social support networks, a range of satisfying occupations and activities relevant to the context, clinical professionals willing to act as partners or coaches and on-line resources which are verified and relevant to the country and context. Knowledge sharing, knowledge building and a learning community are integral to the concept of disease management. It is a population health strategy as well as an approach to personal health. It may reduce healthcare costs and/or improve quality of life for individuals by preventing or minimizing the effects of disease, usually a chronic condition, through knowledge, skills, enabling a sense of control over life (despite symptoms of disease) and integrative care. On the other hand, it may increase health care costs by causing high implementation costs and promoting the use of costly health care interventions. [4]
Disease management has evolved from managed care, specialty capitation, and health service demand management, and refers to the processes and people concerned with improving or maintaining health in large populations. It is concerned with common chronic illnesses, and the reduction of future complications associated with those diseases.
Illnesses that disease management would concern itself with would include: coronary heart disease, chronic obstructive pulmonary disease (COPD), kidney failure, hypertension, heart failure, obesity, diabetes mellitus, asthma, cancer, arthritis, clinical depression, sleep apnea, osteoporosis, and other common ailments.
In the United States, disease management is a large industry with many vendors. Major disease management organizations based on revenues and other criteria [5] [6] include Accordant (a subsidiary of Caremark), Alere (now including ParadigmHealth and Matria Healthcare), [7] Caremark (excluding its Accordant subsidiary), Evercare, Health Dialog, Healthways, LifeMasters (now part of StayWell), LifeSynch (formerly Corphealth), [8] Magellan, McKesson Health Solutions, and MedAssurant.
Disease management is of particular importance to health plans, agencies, trusts, associations and employers that offer health insurance. A 2002 survey found that 99.5% of enrollees of Health Maintenance Organization/Point Of Service (HMO/POS) plans are in plans that cover at least one disease management program. [9] A Mercer Consulting study indicated that the percentage of employer-sponsored health plans offering disease management programs grew to 58% in 2003, up from 41% in 2002. [10]
It was reported that $85 million was spent on disease management in the United States in 1997, and $600 million in 2002. [11] Between 2000 and 2005, the compound annual growth rate of revenues for disease management organizations was 28%. [6] In 2000, the Boston Consulting Group estimated that the U.S. market for outsourced disease management could be $20 billion by 2010; [6] however, in 2008 the Disease Management Purchasing Consortium estimated that disease management organization revenues would be $2.8 billion by 2010. [5] As of 2010, a study using National Ambulatory Medical Care Survey data estimated that 21.3% of patients in the U.S. with at least one chronic condition use disease management programs. [12] Yet, management of chronic conditions is responsible for more than 75% of all health care spending. [13]
During the 2000s, payers have then embraced disease management in many other world regions. [6] In Europe, notable examples include Germany and France. In Germany, the first national disease management program for diabetes enrolled patients in 2003. They are funded and operated by individual sickness funds that in turn contract with regular health care providers. In France, the program Sophia for diabetic patients was introduced in 2008. It is financed and operated as a single national program by statutory health insurance, which has contracted with a private provider for support services. The introduction of these programs was in part facilitated by support from international organizations or firms and study trips or other forms of exchange with Anglo-Saxon countries. [14]
The underlying premise of disease management is that when the right tools, experts, and equipment are applied to a population, labor costs (specifically: absenteeism, presenteeism, and direct insurance expenses) can be minimized in the near term, or resources can be provided more efficiently. The general idea is to ease the disease path, rather than cure the disease. Improving quality and activities for daily living are first and foremost. Improving cost, in some programs, is a necessary component, as well. However, some disease management systems believe that reductions in longer-term problems may not be measureable today, but may warrant continuation of disease management programs until better data is available in 10–20 years. Most disease management vendors offer return on investment (ROI) for their programs, although over the years there have been dozens of ways to measure ROI. Responding to this inconsistency, an industry trade association, the Care Continuum Alliance, convened industry leaders to develop consensus guidelines for measuring clinical and financial outcomes in disease management, wellness and other population-based programs. Contributing to the work were public and private health and quality organizations, including the federal Agency for Healthcare Research and Quality, the National Committee for Quality Assurance, URAC, and the Joint Commission. The project produced the first volume of a now four-volume Outcomes Guidelines Report, which details industry-consensus approaches to measuring outcomes.
Tools include web-based assessment tools, clinical guidelines, health risk assessments, outbound and inbound call-center-based triage, best practices, formularies, and numerous other devices, systems and protocols.
Experts include actuaries, physicians, pharmacists, medical economists, nurses, nutritionists, physical therapists, statisticians, epidemiologists, and human resources professionals. Equipment can include mailing systems, web-based applications (with or without interactive modes), monitoring devices, or telephonic systems.
When disease management programs are voluntary, studies of their effectiveness may be affected by a self-selection bias; that is, a program may "attract enrollees who were [already] highly motivated to succeed". [15] At least two studies have found that people who enroll in disease management programs differ significantly from those who do not on baseline clinical, demographic, cost, utilization and quality parameters. [16] [17] To minimize any bias in estimates of the effectiveness of disease management due to differences in baseline characteristics, randomized controlled trials are better than observational studies. [18]
Even if a particular study is a randomized trial, it may not provide strong evidence for the effectiveness of disease management. A 2009 review paper examined randomized trials and meta-analyses of disease management programs for heart failure and asserted that many failed the PICO process and Consolidated Standards of Reporting Trials: "interventions and comparisons are not sufficiently well described; that complex programs have been excessively oversimplified; and that potentially salient differences in programs, populations, and settings are not incorporated into analyses." [19]
Section 721 of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 authorized the Centers for Medicare and Medicaid Services (CMS) to conduct what became the "Medicare Health Support" project to examine disease management. [20] Phase I of the project involved disease management companies (such as Aetna Health Management, CIGNA Health Support, Health Dialog Services Corp., Healthways, and McKesson Health Solutions) chosen by a competitive process in eight states and the District of Columbia. [20] The project focused on people with diabetes or heart failure who had relatively high Medicare payments; in each location, approximately 20,000 such people were randomly assigned to an intervention group and 10,000 were randomly assigned to a control group. [21] CMS set goals in the areas of clinical quality and beneficiary satisfaction, and negotiated with the disease management programs for a target of 5% savings in Medicare costs. [22] The programs started between August 2005 and January 2006. [20] What is now the Care Continuum Alliance praised the project as "the first-ever national pilot integrating sophisticated care management techniques into the Medicare fee-for-service program". [23]
An initial evaluation of Phase I of the project by RTI International appeared in June 2007 which had "three key participation and financial findings": [21]
DMAA focused on another finding of the initial evaluation, the "high levels of satisfaction with chronic disease management services among beneficiaries and physicians". [24] One commentary noted that the project "can only be observational" since "equivalence was not achieved at baseline". [25] Another commentary claimed that the project was "in big trouble". [26] A paper on the six-month evaluation, published in fall 2008, concluded that "Results to date indicate limited success in achieving Medicare cost savings or reducing acute care utilization". [27]
In December 2007, CMS changed the financial threshold from 5% savings to budget neutrality, a change that DMAA "hailed". [22] [28] In January 2008, however, CMS decided to end Phase I because it claimed that the statutory authority had run out. [29] Four U.S. senators wrote a letter to CMS to reverse its decision. [30] DMAA decried the termination of Phase I and called upon CMS to start Phase II as soon as possible. [31] [32] Among other criticisms of the project, the disease management companies claimed that Medicare "signed up patients who were much sicker than they had expected," failed to transmit information on patients' prescriptions and laboratory results to them in a timely fashion, and disallowed the companies from selecting patients most likely to benefit from disease management. [33]
By April 2008, CMS had spent $360 million on the project. [33] The individual programs ended between December 2006 and August 2008. [20]
The results of the program were published in The New England Journal of Medicine in November 2011. [34] Comparing the 163,107 patients randomized to the intervention group with the 79,310 patients randomized to the control group, the researchers found that "disease-management programs did not reduce hospital admissions or emergency room visits, as compared with usual care." [34] Furthermore, there was "no demonstrable savings in Medicare expenditures," with the net fees for disease management ranging from 3.8% to 10.9% per patient per month. [34] The researchers suggested that the findings might be explained by the severity of chronic disease among the patients studied, delays in patients' receiving disease management after hospitalizations, and lack of integration between health coaches and the patients' primary care providers. [34] [35] [36]
Studies that have reviewed other studies on the effectiveness of disease management include the following:
Studies not reviewed in the aforementioned papers include the following:
Asthma is a long-term inflammatory disease of the airways of the lungs. It is characterized by variable and recurring symptoms, reversible airflow obstruction, and easily triggered bronchospasms. Symptoms include episodes of wheezing, coughing, chest tightness, and shortness of breath. These may occur a few times a day or a few times per week. Depending on the person, asthma symptoms may become worse at night or with exercise.
Heart failure (HF), also known as congestive heart failure (CHF), is a syndrome, a group of signs and symptoms, caused by an impairment of the heart's blood pumping function. Symptoms typically include shortness of breath, excessive fatigue, and leg swelling. The shortness of breath may occur with exertion or while lying down, and may wake people up during the night. Chest pain, including angina, is not usually caused by heart failure, but may occur if the heart failure was caused by a heart attack. The severity of the heart failure is mainly decided based on ejection fraction and also measured by the severity of symptoms. Other conditions that may have symptoms similar to heart failure include obesity, kidney failure, liver disease, anemia, and thyroid disease.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
Chronic kidney disease (CKD) is a type of kidney disease in which a gradual loss of kidney function occurs over a period of months to years. Initially generally no symptoms are seen, but later symptoms may include leg swelling, feeling tired, vomiting, loss of appetite, and confusion. Complications can relate to hormonal dysfunction of the kidneys and include high blood pressure, bone disease, and anemia. Additionally CKD patients have markedly increased cardiovascular complications with increased risks of death and hospitalization.
Non-invasive ventilation (NIV) is the use of breathing support administered through a face mask, nasal mask, or a helmet. Air, usually with added oxygen, is given through the mask under positive pressure; generally the amount of pressure is alternated depending on whether someone is breathing in or out. It is termed "non-invasive" because it is delivered with a mask that is tightly fitted to the face or around the head, but without a need for tracheal intubation. While there are similarities with regard to the interface, NIV is not the same as continuous positive airway pressure (CPAP), which applies a single level of positive airway pressure throughout the whole respiratory cycle; CPAP does not deliver ventilation but is occasionally used in conditions also treated with NIV.
In the healthcare industry, pay for performance (P4P), also known as "value-based purchasing", is a payment model that offers financial incentives to physicians, hospitals, medical groups, and other healthcare providers for meeting certain performance measures. Clinical outcomes, such as longer survival, are difficult to measure, so pay for performance systems usually evaluate process quality and efficiency, such as measuring blood pressure, lowering blood pressure, or counseling patients to stop smoking. This model also penalizes health care providers for poor outcomes, medical errors, or increased costs. Integrated delivery systems where insurers and providers share in the cost are intended to help align incentives for value-based care.
In medicine, patient compliance describes the degree to which a patient correctly follows medical advice. Most commonly, it refers to medication or drug compliance, but it can also apply to other situations such as medical device use, self care, self-directed exercises, or therapy sessions. Both patient and health-care provider affect compliance, and a positive physician-patient relationship is the most important factor in improving compliance. Access to care plays a role in patient adherence, whereby greater wait times to access care contributing to greater absenteeism. The cost of prescription medication also plays a major role.
A chronic condition is a health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include diabetes, functional gastrointestinal disorder, eczema, arthritis, asthma, chronic obstructive pulmonary disease, autoimmune diseases, genetic disorders and some viral diseases such as hepatitis C and acquired immunodeficiency syndrome. An illness which is lifelong because it ends in death is a terminal illness. It is possible and not unexpected for an illness to change in definition from terminal to chronic. Diabetes and HIV for example were once terminal yet are now considered chronic due to the availability of insulin for diabetics and daily drug treatment for individuals with HIV which allow these individuals to live while managing symptoms.
Self-care has been defined as the process of establishing behaviors to ensure holistic well-being of oneself, to promote health, and actively manage illness when it occurs. Individuals engage in some form of self-care daily with food choices, exercise, sleep, and hygiene. Self-care is not only a solo activity, as the community—a group that supports the person performing self-care—overall plays a role in access to, implementation of, and success of self-care activities.
Dr. Kate Lorig, Dr.P.H., is an American professor at the Stanford University School of Medicine. She is also the director of the Stanford Patient Education Research Center. She is known for her work on chronic disease and patient education, has published several books and peer-reviewed journal articles in those fields, and developed a peer-led self-management course for patients with chronic diseases. Lorig is herself a chronic disease patient, having been diagnosed with Gaucher's disease at the age of three.
Chronic care management encompasses the oversight and education activities conducted by health care professionals to help patients with chronic diseases and health conditions such as diabetes, high blood pressure, systemic lupus erythematosus, multiple sclerosis, and sleep apnea learn to understand their condition and live successfully with it. This term is equivalent to disease management for chronic conditions. The work involves motivating patients to persist in necessary therapies and interventions and helping them to achieve an ongoing, reasonable quality of life.
Unwarranted variation in health care service delivery refers to medical practice pattern variation that cannot be explained by illness, medical need, or the dictates of evidence-based medicine. It is one of the causes of low value care often ignored by health systems.
Disease or patient registries are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in post marketing surveillance of pharmaceuticals. Registries are different from indexes in that they contain more extensive data.
The Care Continuum Alliance is an industry trade group of corporations and individuals that "promotes the role of population health improvement in raising the quality of care, improving health outcomes and reducing preventable health care costs for individuals with chronic conditions and those at risk for developing chronic conditions". It supports "care continuum services" such as "health and wellness promotion, disease management, and care coordination" by means of "advocacy, research, and the promotion of best practices in care management".
Pulmonary rehabilitation, also known as respiratory rehabilitation, is an important part of the management and health maintenance of people with chronic respiratory disease who remain symptomatic or continue to have decreased function despite standard medical treatment. It is a broad therapeutic concept. It is defined by the American Thoracic Society and the European Respiratory Society as an evidence-based, multidisciplinary, and comprehensive intervention for patients with chronic respiratory diseases who are symptomatic and often have decreased daily life activities. In general, pulmonary rehabilitation refers to a series of services that are administered to patients of respiratory disease and their families, typically to attempt to improve the quality of life for the patient. Pulmonary rehabilitation may be carried out in a variety of settings, depending on the patient's needs, and may or may not include pharmacologic intervention.
Remote patient monitoring (RPM) is a technology to enable monitoring of patients outside of conventional clinical settings, such as in the home or in a remote area, which may increase access to care and decrease healthcare delivery costs. RPM involves the constant remote care of patients by their physicians, often to track physical symptoms, chronic conditions, or post-hospitalization rehab.
Childhood chronic illness refers to conditions in pediatric patients that are usually prolonged in duration, do not resolve on their own, and are associated with impairment or disability. The duration required for an illness to be defined as chronic is generally greater than 12 months, but this can vary, and some organizations define it by limitation of function rather than a length of time. Regardless of the exact length of duration, these types of conditions are different than acute, or short-lived, illnesses which resolve or can be cured. There are many definitions for what counts as a chronic condition. However, children with chronic illnesses will typically experience at least one of the following: limitation of functions relative to their age, disfigurement, dependency on medical technologies or medications, increased medical attention, and a need for modified educational arrangements.
Value-based insurance design is a demand-side approach to health policy reform. V-BID generally refers to health insurers' efforts to structure enrollee cost-sharing and other health plan design elements to encourage enrollees to consume high-value clinical services – those that have the greatest potential to positively impact enrollee health. V-BID also discourages the use of low-value clinical services – when benefits do not justify the cost. V-BID aims to increase health care quality and decrease costs by using financial incentives to promote cost efficient health care services and consumer choices. V-BID health insurance plans are designed with the tenets of "clinical nuance" in mind. These tenets recognize that medical services differ in the amount of health produced, and the clinical benefit derived from a specific service depends on the consumer using it, as well as when and where the service is provided.
Digital therapeutics, a subset of digital health, are evidence-based therapeutic interventions driven by high quality software programs to prevent, manage, or treat a medical disorder or disease. Digital therapeutic companies should publish trial results inclusive of clinically meaningful outcomes in peer-reviewed journals. The treatment relies on behavioral and lifestyle changes usually spurred by a collection of digital impetuses. Because of the digital nature of the methodology, data can be collected and analyzed as both a progress report and a preventative measure. Treatments are being developed for the prevention and management of a wide variety of diseases and conditions, including type 1 & type II diabetes, congestive heart failure, obesity, Alzheimer's disease, dementia, asthma, substance abuse, ADHD, hypertension, anxiety, depression, and several others. Digital therapeutics often employ strategies rooted in cognitive behavioral therapy.
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