Cost-Benefit Analysis of Providing Non-Emergency Medical Transportation (2005)

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Appendix A: Glossary of Technical Terms Acquired Immune Deficiency Syndrome (AIDS) – A diagnosis of AIDS is made when a person with HIV antibodies has either a CD4 cell count below 200 or one of a list of diseases that are unusual in a person with a healthy immune system. acute condition – A short term medical condition that resolves usually in less than 3 weeks. ADA – See Americans with Disabilities Act. ADHD (ADHD) – See Attention Deficit Hyperactivity Disorder. adverse drug reaction – A term to describe the unwanted, negative consequences associated with the use of medications. Agency for Healthcare Research and Quality (AHRQ) – Part of the US DHHS, the AHRQ supports research designed to improve the outcomes and quality of healthcare, reduce its costs, address patient safety and medical errors, and broaden access to effective services. aggregate – A collection of units; also the whole or sum total. AHRQ – See Agency for Healthcare Research and Quality. AIDS – See Acquired Immune Deficiency Syndrome. Altarum Institute – A family of business groups, each using policy, research, and technology tools to understand a problem and deliver a solution that promotes the sustainable well-being of society and a better way of life. American Public Transportation Association (APTA) – A Washington, DC based, non-profit organization that serves as an advocate for the advancement of public transportation programs and initiatives. Americans with Disabilities Act (ADA) – Federal legislation enacted in the U.S. 1990 to ensure disabled Americans civil rights, including access to public transit services. anemia – A lack of red blood cells and/or hemoglobin. This results in a reduced ability of blood to transfer oxygen to the tissues. APTA – See American Public Transportation Association. arthritis – A group of conditions that affect the health of the bone joints in the body. asthma – An immunological disease which causes difficulty in breathing. It is a form of Type I hypersensitivity in which the bronchioles in the lungs are narrowed by inflammation and spasm of the lining of the airway wall. A person with asthma may experience wheezing and shortness of breath, particularly after exercise or when emotional. Sudden attacks of breathlessness may require hospitalization. Attention Deficit Hyperactivity Disorder (ADHD) – A mental disorder that affects children and adults producing predominantly inattentive, predominantly hyperactive, or a combination of these in the behavior. autism – A neurodevelopmental disorder that causes marked problems with social relatedness, communication, interest, and behavior. benefit – In economics, the utility of people considered in aggregate. bias – In statistics, the word bias means that an estimator for some reason, on average, over- or under-estimates what is being estimated. binomial distribution – The discrete probability distribution of the number of successes in a sequence of n independent yes/no experiments, each of which yields success with probability p. The binomial distribution is the basis for the popular binomial test of statistical significance. BTS – See Bureau of Transportation Statistics. Bureau of Transportation Statistics (BTS) – A part of the U.S. Department of Transportation that compiles, analyzes, and makes accessible information on the nation's transportation systems; collects information on intermodal transportation and other areas as needed; and enhances the quality and effectiveness of DOT's statistical programs through research, development of guidelines, and promotion of improvements in data acquisition and use. cancer – The group of diseases characterized by uncontrolled cell division and the ability of these cells to invade other tissues and spread to other areas of the body where the cells are not normally located (metastasis). Final Report A-1

cardiovascular disease – The class of diseases that involve the heart and/or blood vessels (arteries and veins). These problems are most commonly due to consequences of arterial disease, atherosclerosis, but also can be related to infection, valvular, and clotting problems. CBA – See cost benefit analysis. CDC – See Centers of Disease Control and Prevention. CEA – See cost-effectiveness analysis. Centers of Disease Control and Prevention (CDC) – The federal agency charged with protecting the public health and safety of people by providing credible information to enhance health decisions, and promoting health through strong partnerships with state health departments and other organizations. cerebral palsy – A group of permanent disorders associated with developmental brain injuries that occur during fetal development, birth, or shortly after birth. Characterized by a disruption of motor skills with symptoms such as spasticity, paralysis, or seizures. CHF – See congestive heart failure. chronic condition – A prolonged disease state, e.g. Congestive heart failure, diabetes, asthma. chronic obstructive pulmonary disease (COPD) – A group of diseases of the respiratory tract that are characterized by airflow obstruction or limitation. Usually caused by smoking. clinical guideline – A collection of practical information for use by doctors and other medical professionals, often gleaned from systematic review of medical journals and other published material. clinician – A professional in the healthcare industry that is involved in the direct care of individuals’ physical and/or mental health. Also called a healthcare provider. Community Transportation Association of America (CTAA) – A trade association that strives to build communities through transportation access and enhanced mobility. co-morbid condition – The presence of one or more disorders (or diseases) in addition to a primary disease or disorder. co-morbidity - The effect of all other diseases an individual patient might have other than the primary disease of interest. congestive heart failure (CHF) – The inability of the heart to pump a sufficient amount of blood throughout the body. Also called congestive cardiac failure and heart failure. COPD – See chronic obstructive pulmonary disease. coronary heart disease – The end result of the accumulation of atheromatous plaques within the walls of the arteries that supply the myocardium (the muscle of the heart). Also called coronary artery disease (CAD) and atherosclerotic heart disease. cost – A price paid, or otherwise associated with, a commercial event or economic transaction. cost benefit analysis (CBA) – The process of weighing the total expected costs vs. the total expected benefits of one or more actions in order to choose the most profitable option. Cost-effectiveness analysis (CEA) – The comparison of the relative expenditure (costs) and outcomes (effects) associated with two or more courses of action. Cost-effectiveness is typically expressed as an incremental cost-effectiveness ratio (ICER) the ratio of change in costs to the change in effects. In health economics a figure of US$50,000 per quality-adjusted life year (QALY) is often suggested as the upper limit of an acceptable ICER. cost estimation model – A set of mathematical algorithms used to estimate the costs of a product or project. The results of the models are typically necessary to obtain approval to proceed, and are factored into business plans, budgets, and other financial planning and tracking mechanisms. cost-minimization analysis – When relevant effects of the given healthcare interventions are observed to be similar, cost-minimization analysis is used to compare net costs. In principle, this analysis requires clinical evidence to support the notion that differences in health effects between alternatives are minimal or not important. cost-of-illness study – A cost of illness study is used to determine the overall cost to society of a particular disease or condition. These studies are generally conducted at national level, making use of surveys of health professionals in addition to published epidemiological and other data. Cost of illness studies highlight the impact of a particular disease on society, particularly the extra resources that are required to manage the disease or the productivity lost as a result of the disease. Final Report A-2

CTAA – See Community Transportation Association of America. demand – The quantity of a good that consumers are not only willing to buy but also have the capacity to buy at the given price. demographic factors – Characteristics that segment the population into groups, e.g. age; gender; nationality. depression – A medical condition with symptoms that last two weeks or more, and are so severe that they interfere with daily living. diabetes – A medical disorder characterized by varying or persistent hyperglycemia (elevated blood sugar levels), especially after eating. All types of diabetes mellitus share similar symptoms and complications at advanced stages, which can include cardiovascular disease, chronic renal failure, retinal damage with eventual blindness, nerve damage and eventual gangrene with risk of amputation of toes, feet, and even legs. dialysis – A method for removing waste such as urea from the blood when the kidneys are incapable of this. direct cost – See variable cost. disability – Having a condition that impedes the completion of daily tasks using traditional methods including physical impairments affecting movement, such as post-polio syndrome, spina bifida and cerebral palsy; sensory impairments, such as visual or hearing impairments; cognitive impairments such as Autism or Down Syndrome.; or psychiatric conditions such as Depression and Schizophrenia. disease incidence – A measure of occurrences of a disease in a specified time interval. disease management – A system of coordinated healthcare interventions and communications for populations with conditions in which patient self- care efforts are significant. Disease Management Association of America (DMAA) – The non-profit, voluntary membership organization, founded in March of 1999, which represents all aspects of the disease management community. disease prevalence – The prevalence of a disease in a statistical population is defined as the ratio of the number of cases of a disease present in a statistical population at a specified time and the number of individuals in the population at that specified time. DMAA – See Disease Management Association of America. dominance – A method for comparing alternative interventions in a cost-effectiveness analysis. Strong dominance favors a strategy that is both more effective and less costly. Strong dominance occurs only when the innovation is very good (it works better and saves cost) or very bad (its works worse and costs more). dummy variable – A binary (off-on) variable designed to take account of exogenous shifts or changes of slope in an econometric relationship. eczema – A skin irritation characterized by red, flaky skin, sometimes with cracks or tiny blisters. emergency room (ER) – A room, or group of rooms, within a hospital that is designed for the treatment of urgent and medical emergencies. End Stage Renal Disease (ESRD) – A slowly progressive loss of renal function over a period of months or years that leads to ESRF. End Stage Renal Failure (ESRF) – The ultimate consequence of renal disease. Dialysis is generally required although renal transplant can be an option. ER – See emergency room. ESRD – See End Stage Renal Disease. ESRF – See End Stage Renal Failure. EuroQol 5D – A standardized instrument for use as a measure of health outcome. Applicable to a wide range of health conditions and treatments, it provides a simple descriptive profile and a single index value for health status. Federal Highway Administration (FHWA) – A division of the U.S. Department of Transportation that specializes in highway transportation funding, standards, and research. Federal Transit Administration (FTA) – A division of the U.S. Department of Transportation that specializes in public transportation funding, standards, and research. FHWA – See Federal Highway Administration. fixed cost – Costs that do not vary with output, e.g., rent. In the long run, all costs can be considered variable. fixed route – A predetermined destination, or set of destinations. FTA – See Federal Transit Administration. Final Report A-3

functional limitation – A condition that limits a function of daily living, often the result of a disability. GAO – See Government Accountability Office. gap analysis – A process to map the difference between a desired and existing state. General Accounting Office – See Government Accountability Office. geographic factors – The location and spatial characteristics of residence, e.g., urban, rural. Government Accountability Office (GAO) – An independent and nonpartisan agency that studies the programs and expenditures of the federal government as requested by Congress. Prior to 2004, this agency was called the General Accounting Office. health economics – A branch of economics concerned with the formal analysis of costs, benefits, management and consequences of healthcare. Health economics often uses mathematical models to synthesize data from biostatistics and epidemiology for support of medical decision-making, both for individuals and for wider health policy. healthcare provider – A professional that provides service related to: the preservation or improvement of the health of individuals, or the treatment or care of individuals who are injured, sick, disabled or infirm. It includes medical doctor (physician), nurse-practitioner, physician assistant, nurse, or dentist. Also called a clinician. Can also be spelled health-care provider. heart disease – An umbrella term that includes the following conditions: coronary heart disease; ischaemic heart disease; hemorrhagic heart disease; cardiovascular disease. health-related quality of life – A construct that refers to the impact of the health aspects of an individual’s life on that person’s quality of life, or overall well-being. Also used to refer to the value of a health state to an individual, e.g., living with a chronic disease or a particular disability. HIV – See Human Immunodeficiency Virus. home health care – The limited part-time or intermittent skilled nursing care and home health aide services, physical therapy, occupational therapy, speech-language therapy, medical social services, durable medical equipment (such as wheelchairs, hospital beds, oxygen, and walkers), medical supplies, and other services provided in the patient’s home. HRQL – See health-related quality of life. HTN – See hypertension. Human Immunodeficiency Virus (HIV) – A retrovirus that infects cells of the human immune system. Infection with HIV has been established as the underlying cause of AIDS. hypertension – Abnormally high blood pressure. ICD – See International Classification of Diseases. immunization – The process by which an individual is exposed to a material that is designed to prime his or her immune system against that material. Immunizations differ from vaccines in that no viral agent is used. incremental cost – The increase in total cost that arises when the quantity produced (or purchased) increases by one unit. inpatient stay – Hospital care delivered to a patient for a time period longer than 24 hours. insomnia – A sleep disorder characterized by an inability to sleep and/or to remain asleep for a reasonable period during the night. International Classification of Diseases (ICD) – An internationally recognized coding system for medical conditions. Irritable Bowel Syndrome – A group of functional bowel disorders with symptoms of abdominal pain or discomfort associated with changes in bowel habits. ischaemic heart disease – A disease characterized by reduced blood supply to the heart. It is the most common cause of death in most western countries. labor – The work done by human employees. margin of error – The 99 percent confidence interval for a reported percentage of 50 percent. It represents an upper bound to the uncertainty; one is at least 99 percent certain that the "true" percentage is within a margin of error of a reported percentage for any reported percentage. marginal cost – See incremental cost. mean – The sum of all the observations divided by the number of observations. Also called average. median – A number that separates the highest half of a sample, population, or probability distribution from the lowest half. More precisely, 1/2 of the population will have values less than or equal to Final Report A-4

the median and 1/2 of the population will have values equal to or greater than the median. Medicaid – State and federal health insurance program for low-income Americans. Medical Expenditure Panel Survey (MEPS) – The third (and most recent) in a series of national probability surveys conducted by AHRQ on the financing and utilization of medical care in the United States. Medicare – Federally funded health insurance program for elderly and disabled persons. mental health – The absence of a mental illness such as depression that limits the capacity to live a full life. MEPS – See Medical Expenditure Panel Survey. Metropolitan Statistical Area (MSA) – Formal definition of a metropolitan area that is organized around county boundaries. mode – The type of transportation used for travel, e.g., bus, car, bike. Mode choice has been analyzed in transit studies to determine travel behavior and preference for modes, e.g., red bus, blue bus. monitoring – A planned, systematic, and ongoing process to gather and organize data, and aggregate results in order to evaluate a patient’s disease status. morbidity – Illness. mortality – Death. MSA – See Metropolitan Statistical Area. multiple linear regression – The method of estimating the conditional expected value of one variable y given the values of some other variable or variables x. Multiple Sclerosis – A non-contagious chronic autoimmune disorder of the central nervous system which can present with a variety of neurological symptoms occurring in attacks or slowly progressing over time. Due to its effects of the nervous system, it can lead to long-term impaired mobility and disability in the more severe cases. muscular dystrophy – A group of genetic and hereditary muscle diseases; characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. National Center for Health Statistics (NCHS) – One of the Centers of Disease Control and Prevention, the NCHS is the United States' principal health statistics agency. It designs, develops, and maintains a number of systems that produce data related to demographic and health concerns. National Health Interview Survey (NHIS) – A nationally representative, longitudinal survey coordinated by the NCHS, on the health of the United States civilian non-institutionalized population. National Household Travel Survey (NHTS) – A survey conducted by the Bureau of Transportation Statistics and the Federal Highway Administration to collect data on both long-distance and local travel by the American public (formerly known as the National Personal Transportation Survey, or NPTS) National Transit Database (NTD) – A database collected and maintained by the Federal Transit Authority on the state of public transportation in the U.S. NCHS – See National Center for Health Statistics. NEMT – See non-emergency medical transportation. neuropathy – A disease of the peripheral nervous system. NHIS – See National Health Interview Survey. NHTS – See National Household Travel Survey. noncompliance – Can refer to either patient or provider behavior that does not adhere to recommended standards of care. non-emergency medical transportation (NEMT) – Transit for healthcare purposes, excluding emergency transit, e.g. Routine medical appointments, dental care, preventive services. NTD – See National Transit Database. office-based visit – A visit to a healthcare provider that operates outside of a hospital. opportunity cost – The value of the best alternative that was not chosen in order to pursue the current endeavor, e.g., what could have been accomplished with the resources expended in the undertaking. It represents opportunities forgone. outpatient visit – A visit to a hospital-based healthcare provider that does not include an overnight stay. parameter – A measurement or value on which something else depends. In probability theory, one may describe the distribution of a random variable Final Report A-5

as belonging to a family of probability distributions, distinguished from each other by the values of a finite number of parameters. Statistical analysis attempts to estimate the parameters of a distribution based on observed data. paratransit – A passenger transportation service primarily intended for mobility-impaired, mentally- impaired, and senior citizens (elderly persons). The trips may be provided by public, non-profit, or other organizations and are often subsidized for the rider and require advance scheduling. Pareto rule – An observation generally borne out in analyses of a wide variety of distributions that states that 20% of cases will account for 80% of the outcomes under study. For example, 20% of patients will account for 80% of healthcare expenditures in a given population. It is also labeled the “80-20” rule. Parkinson’s disease – A neurodegenerative disease affecting the part of the brain that controls and adjusts communication between neurons in the brain and muscles in the body. per capita – A Latin phrase meaning “for each head” that is usually used to indicate the average per person of any given statistic. poorly managed patients – Patients whose disease or diseases are not managed according to current clinical guidelines. prenatal care – Medical care recommended for women before and during pregnancy. The aim of good prenatal care is to detect any potential problems early, to prevent them if possible (through recommendations on adequate nutrition, exercise, vitamin intake etc), and to direct the woman to appropriate specialists, hospitals, etc. if necessary. prescription – An order by a medical doctor to a pharmacist for a drug to be provided to the doctor's patient. prescriptive analysis – A measurement of whether actual data meets an ideal standard. present value – The present value of a future cash flow is the nominal amount of money to change hands at some future date, discounted to account for the time value of money. A given amount of money is always more valuable sooner than later since this enables one to take advantage of investment opportunities. preventive medicine – Health services aimed at preventing the contraction or progression of disease, e.g. screening or vaccinations. primary care – A term used for a healthcare provider who acts as a first point of consultation for all patients. Generally, primary care physicians are based in the community, as opposed to the hospital. probability – A number expressing the likelihood that a specific event will occur, expressed as the ratio of the number of actual occurrences to the number of possible occurrences. Prospective Payment System – A method of reimbursement in which Medicare payment is made based on a predetermined, fixed amount. public transit – Comprises all transport systems in which the passengers do not travel in their own vehicles. While it is generally taken to mean rail and bus services, wider definitions would include scheduled airline services, ferries, and taxicab services. Also called public transport or mass transit. QALY – See quality-adjusted life year. quality health outcomes – Health outcomes that affect quality of life issues, e.g. illness or disability. quality-adjusted life year (QALY) – A measure of the benefit of a medical intervention based on the number of years of life that would be added by the intervention. If the extra years would not be lived in full health, for example if the patient would be blind, then the extra life-years are adjusted by a factor to account for this. quantity health outcomes – Health outcomes that can be quantified in a benefit cost analysis or cost- effectiveness analysis, e.g., life expectancy or mortality. race and ethnicity– A social construct that distinguishes populations who are identified by themselves or others as biologically or culturally similar. randomized controlled trial – A form of clinical trial, or scientific procedure, used in the testing of the efficacy of medicine because of its record of reliability. A randomized controlled study is one in which there are two groups- one treatment group and one control group. The treatment group receives the treatment under investigation, and the control group receives either no treatment or some standard default treatment; and patients are randomly assigned to all groups. renal disease – Any acute or chronic condition of the kidneys that lead to failure or improper functioning. Final Report A-6

Resource Based Relative Value System – The system designed to compensate Medicare providers that assigns every action a doctor makes (e.g. procedures, referrals, etc.) a relative value. This is multiplied by a conversion factor (in dollars) to find what the doctor should be paid. rural – Sparsely settled places away from the influence of large cities and towns. Rx – See prescription. safety net providers – Healthcare providers or facilities that ensure Americans without adequate health insurance can access medical care, e.g. hospital emergency rooms, and migrant health centers. sampling – The analysis of a group by determining the characteristics of a significant percentage of its members chosen at random. screening – Preventive health service to detect the early onset of disease, e.g. certain types of cancer; or depression. SF-12 – See Short Form 12. Short Form 12 (SF-12) – A survey designed to assess health profiles as well as summary measures of health-related quality of life. sickle cell anemia – A genetic disease in which red blood cells may change shape under certain circumstances causing the cells to become stuck in capillaries. This deprives the downstream tissues of oxygen and causes periodic painful attacks, eventually leading to damage of internal organs. sinusitis – An inflammation, either bacterial, viral, allergic or autoimmune, of the paranasal sinuses that can be acute or chronic. socioeconomic factors – The social and economic characteristics that affect a population, e.g., education levels; or annual income. specialty care – Medical care delivered by providers who specialize in a type of medicine, e.g. obstetrics, or gerontology. statistical significance – In statistics, a result is significant if it is unlikely to have occurred by chance, given that a presumed null hypothesis is true. stroke – A stroke occurs when the blood supply to a part of the brain is suddenly interrupted by occlusion or by hemorrhage. It is a medical emergency and a significant cause of disability and death. substance abuse – A pattern of continued harmful use of a mood altering substance, which results in adverse social consequences. Substance abuse may lead to addiction or substance dependence. survey – A gathering of a sample of data or opinions considered to be representative of a whole. Target Population – In survey research, the target population is the ideal population to be surveyed to meet the objectives of the survey. Similarly, in this report, we use "target population" to refer to the precise population that this research attempts to describe and study: individuals who miss non- emergency medical care and who are transportation disadvantaged (see the Venn diagram shown in Chapter 3 of the report). There is an intrinsic ambiguity in counting this target population for a given time period. First, on the transportation side, one can be distinctly transportation disadvantaged (do not own a vehicle, unable to drive, have barriers to use of public transportation, etc.), and yet find transportation in a given instance for a specific purpose (rely on a relative or neighbor, pay for a taxi, etc.). Second, on the health side, by definition, one cannot miss a health care visit that one believes is unnecessary or does not even attempt to schedule for some non-transportation- related reason (e.g., lack of health insurance, inability to pay). In addition, a transportation- disadvantaged individual may, by good fortune, be healthy over the measurement period. If this person becomes ill, then he or she would transition into the target population. This study labels this phenomenon persistence. Alternately, a visit may be perceived as unnecessary because of its preventive nature, or it may be a monitoring or follow-up visit that has a high value after the fact if it is productive (could have prevented serious disease), but that appears superfluous prior to the visit. For these reasons and others, the target population at risk of missing non-emergency care due to transportation barriers is larger than the one that we can measure using nationally representative data sources. transit – Local area common carrier passenger transportation configured to provide scheduled service on fixed routes on a non-reservation basis. transportation barriers – An impediment to accessing transportation, e.g., no car, bus route is unavailable; or cannot find a ride. transportation disadvantaged – Those who, due to low income, physical or mental disability, inability to drive, geographic isolation, or some Final Report A-7

other transportation barrier, cannot transport themselves or are unable to purchase available transportation services. Transportation Research Board (TRB) – A division of the National Research Council that serves as an independent adviser to the federal government and others on scientific and technical questions of national importance. Transportation Research Information Services (TRIS) – A bibliographic database funded by sponsors of the Transportation Research Board primarily the state departments of transportation and selected federal transportation agencies. travel behavior – The study of what people do over space and how people use transport. The questions studied in travel behavior are broad and very much related to activity analysis and time use studies. travel-affecting medical condition – A medical condition that impacts mobility and access to transportation. TRB – See Transportation Research Board. triangulation – A method in social science, also called "cross examination", that relies on multiple methods to confirm a conclusion. TRIS – See Transportation Research Information Service. United States Congressional Budget Office (US CBO) – A federal agency within the legislative branch of the United States government. The main goal of this office is to provide Congress with objective, timely, nonpartisan analyses needed for economic and budget decisions and with the information and estimates required for the Congressional budget process. United States Department of Health and Human Services (US DHHS) – A Cabinet department of the United States government with the goal of protecting the health of all Americans and providing essential human services. United States Department of Transportation (US DOT) – Federal agency responsible for public transportation, road and highway safety, and more, including funding for highways and public transportation. urban – Cities or towns with increased population density, size, and, often, incorporated legal status. US CBO – See United States Congressional Budget Office. US DHHS – See United States Department of Health and Human Services. US DOT – See United States Department of Transportation. vaccine – An antigenic preparation used to produce active immunity to a disease, in order to prevent or ameliorate the effects of infection by any natural or 'wild' strain of the organism. variable cost – Costs that vary directly with the rate of output, e.g., labor, fuel, power, or cost of raw material. Also known as operating costs, prime costs, or direct costs. vehicle – A non-living means of transport, most often made by humans, e.g., cars, motorcycles, trains, ships, aircraft, buses. weight – In statistics, a coefficient assigned to elements of a frequency distribution in order to represent their relative importance. weighted function – A mathematical device used when performing a sum, integral, or average in order to give some elements more of a "weight" than others. Weighted means are commonly used in statistics to compensate for the presence of bias. well-managed patients - Patients whose disease or diseases are managed according to current clinical guidelines. Final Report A-8