Abbreviations

AAPCC Adjusted average per capita cost CKD-EPI chronic kidney disease epidemiology calculation ACEI angiotensin-converting enzyme inhibitor CKO cytokinin oxidase ACR albumin/creatinine ratio CMS Centers for Medicare & Medicaid Services ADL activities of daily living CMV cytomegalovirus (antibody status) ADR annual data report COPD chronic obstructive pulmonary disease AF atrial fibrillation CORR Canadian Organ Replacement Register AFIB atrial fibrillation CPM clinical performance measures AFS Annual Facility Survey (CMS 2744) CPRA calculated panel reactive bodies AJKD American Journal of Kidney Disease CPT current procedure and terminology AKI acute kidney injury CrCl creatinine rate AKI-D acute kidney injury with CROWNWeb Consolidated Renal Operations in a Web- AMI acute myocardial infarction Enabled Network (CROWN) Data — data collection system for ESRD dialysis ANZDATA Australia & New Zealand ESRD database facilities mandated by CMS

ARB angiotensin receptor blocker CRT cardiac resynchronization

ASHD atherosclerotic heart disease CVA cerebrovascular accident

AV arteriovenous CVD cardiovascular disease

BMI body mass index CVVHD continuous venous-to-venous BUN blood nitrogen CWF common working file CABG coronary artery bypass grafting DCD donation after circulatory death CAPD continuous ambulatory peritoneal dialysis DCI Dialysis Clinic, Inc. CBC complete blood count DFC dialysis facility compare CCPD continuous cycling peritoneal dialysis DGF delayed graft function CDC Centers for Disease Control and Prevention DHD daily hemodialysis

CDM Clinformatics DataMart DM diabetes mellitus

CDS Comprehensive Dialysis Study DME durable medical equipment

CES-D Center for Epidemiologic Studies DMMS Dialysis Morbidity and Mortality Study Depression Scale DPO darbepoetin alfa CKD chronic kidney disease Abbreviations

DRG diagnosis related group HRSA Health Resources and Services Administration DSA Donation Service Area [or Disability Services Agency] HS hospice

DUA data use agreement HSA Health Service Area

ECD expanded criteria donor HTN hypertension

EDB Enrollment Database ICD-9 International Classification of Diseases, 9th revision eGFR estimated glomerular rate ICD-9-CM International Classification of Diseases, EGHP employer group health plan 9th revision, Clinical Modification

EPO ICD-10 International Classification of Diseases, 10th revision ESA erythropoiesis stimulating agent ICD-10-CM International Classification of Diseases, ESRD end-stage renal disease 10th revision, Clinical Modification

FSD first service date ICD implantable cardioverter defibrillator

GFR glomerular filtration rate ICD/CRT-D implantable cardioverter defibrillator/cardiac resynchronization GLIMMIX A SAS procedure therapy with defibrillator device GN glomerulonephritis ICW intracellular water HbA1c glycosylated hemoglobin IHD intermittent hemodialysis HB hospital-based IL2-RA interleukin 2 receptor alpha HCFA Health Care Financing Administration IP inpatient (CMS before July 2001) IPD intermittent peritoneal dialysis HCPCS healthcare common procedure coding system IRB Institutional Review Board

HD hemodialysis ISHD ischemic heart disease

HDL high density lipoprotein IV intravenous

HEDIS Health Plan Employer Data Information KDIGO Kidney Disease Improving Global Set Outcomes

HF Heart failure KDOQI Kidney Disease Outcomes Quality Initiative Hgb hemoglobin LDL low density lipoprotein HHA home health agency LDO large dialysis organization HIC health insurance claims LIS low income subsidy HIC/BIC Health Insurance Claim/Beneficiary Identification Code MCBS Medicare Current Beneficiary Survey

HIPAA Health Insurance Portability and MDRD Modification of Diet in Renal Disease Accountability Act MI myocardial infarction HLA Human leukocyte antigen 2018 USRDS Annual Data Report | Appendices

MPP Medicare as primary payer PTLD post-transplant lymphoproliferative disorder MSP Medicare as secondary payer PVD peripheral vascular disease mTOR mammalian (or mechanistic) target of rapamycin QI qualifying individuals

NCHS National Center for Health Statistics QMB qualified Medicare beneficiaries

NCQA National Committee for Quality Assurance RBC red blood cells

NEJM New England Journal of Medicine REBUS Renal Beneficiary and Utilization System

NHANES National Health and Nutrition REMIS Renal Management Information System Examination Survey rhGH recombinant human growth hormone NHIS National Health Interview Survey RRB Railroad Retirement Board NIDDK National Institute of Diabetes and Digestive and Kidney Diseases SAF standard analysis file

NKF National Kidney Foundation SAS Statistical Analysis System

OMB Office of Management and Budget SCA/VA Sudden cardiac arrest and ventricular arrhythmias OOP out-of-pocket SCD sudden cardiac death OP outpatient SCD standard criteria donor OPTN Organ Procurement and Transplantation Network SDO small dialysis organization

PACE programs of all-inclusive care for the SHR standardized hospitalization ratio elderly SMR standardized mortality ratio PAD peripheral arterial disease SNF skilled nursing facility PCI percutaneous coronary intervention SSA Social Security Administration PD peritoneal dialysis SSI Supplemental Security Income PDE prescription drug event SSRI selective serotonin reuptake inhibitor PDP prescription drug plan STR standardized transplantation rate PII patient identifiable information STrR standardized transfusion ratio PMMIS Program Medical Management and Information System TBW total body weight

PPPM per person per month THMS Truven Health Market Scan

PPPY per person per year TIA transient ischemic attack

PPS prospective payment system TrOOP true out-of-pocket costs

PRA panel reactive antibodies Tx transplant

pts patients TZD thiazolidinedione UNOS United Network for Organ Sharing Abbreviations

URR urea reduction ratio VAT vascular access type

USRDS United States Renal Data System WHO World Health Organization

VA vascular access Glossary

Acute kidney injury (AKI) Also known as acute Beta blockers Antihypertensive medications that kidney failure or acute renal failure. A sudden block β-adrenergic receptors, thus interfering decline in renal function triggered by any of a with the actions of endogenous catecholamines number of conditions such as shock, trauma, (epinephrine and norepinephrine), slowing the drug toxicity, acute glomerulonephritis, heart rate and reducing the constriction of vasculitis, or obstruction to flow. blood vessels. Acute myocardial infarction (AMI) An event (BUN) A by-product of the causing death to a portion of the heart muscle breakdown of amino acids and endogenous and due to lack of blood supply. ingested protein. Adult polycystic kidney disease An inherited Body mass index (BMI) A measure of height to disease in which normal kidney tissue is weight ratio: weight (kg)/height (m2). replaced by multiple cysts. C-reactive protein A protein produced by the Albumin/creatinine ratio (ACR) A screening liver in response to infection or inflammation; test used to estimate the amount of albumin high levels are associated with an increased risk in a patient’s urine. of heart disease and stroke. Anemia A condition marked by a reduced Calcium channel blockers Antihypertensive number of red cells in the bloodstream. agents that work by blocking the access of Angiography A radiographic procedure where a calcium to muscle cells in artery walls. radio-opaque contrast material is injected into Cardiac arrest A sudden complete cessation of a blood vessel for the purpose of identifying its cardiac activity. anatomy. Cardiac resynchronization therapy Angioplasty A procedure in which a balloon defibrillator (CRT-D) An implantable device catheter is inserted into a blocked or narrowed designed to arrest the fibrillation of heart vessel to reopen the vessel and allow normal muscle by applying an electric shock, thus blood flow. depolarizing the heart cells and allowing Angiotensin converting enzyme (ACE) normal rhythm to return. inhibitor An antihypertensive agent that Cardiomyopathy A general diagnostic term inhibits the conversion of angiotensin I to indicating a disease of the heart muscle. angiotensin II. Can delay progression of Catastrophic coverage Health insurance to cover kidney disease in diabetics. costs that exceed routine healthcare insurance Angiotensin II receptor blocker (ARB) An benefits. antihypertensive agent that inhibits the Coronary artery disease (CAD) A disease of the actions of angiotensin II, a substance that arteries of the heart, characterized by a causes constriction of blood vessels. thickening and narrowing and/or loss of Arteriovenous fistula A type of vascular access elasticity of the arterial walls due to plaque used in hemodialysis patients and created by deposition. the anastomosis of an artery and a vein. Centers for Disease Control & Prevention Arteriovenous graft A type of vascular access (CDC) The lead federal agency for protecting used in hemodialysis patients and created via a the health and safety of people at home and connection between an artery and vein using abroad; develops and applies programs either a native vessel (e.g. saphenous vein) or a designed to improve the health of the people of synthetic material. the United States. Glossary

Centers for Medicare & Medicaid Services claims records are the data source for most (CMS) Formerly the Health Care Financing claims and utilization files used by the USRDS. Administration (HCFA). Federal agency that Comprehensive Dialysis Study (CDS) A special administers the Medicare, Medicaid, and State data collection study that focuses on physical Childrens’ Health insurance programs. activity level, health-related quality of life, and Cerebrovascular accident (CVA) A general work/disability status reported by patients who descriptor that encompasses such problems as have recently started maintenance dialysis. stroke and cerebral hemorrhage. Continuous ambulatory peritoneal dialysis Cerebrovascular disease A disease that causes (CAPD) A type of dialysis in which dialysate is narrowing or occlusion of the arteries continuously present in the abdominal cavity. supplying blood to the brain. Fluid is exchanged using gravity to fill and Chain provider A single business entity that at empty the cavity 4–5 times a day. year’s end owns or operates 20 or more Continuous cycling peritoneal dialysis (CCPD) freestanding dialysis units. This definition A type of dialysis in which the abdominal cavity applies to all chain affiliation references in the is filled and emptied of dialysate using an USRDS Annual Data Reports. An alternative automated cycler machine. definition from the Centers for Medicare & Coverage gap The interval in a prescription drug Medicaid Services (CMS) can be found under plan beginning once initial benefits are “definitions” in the Health Care Provider/ exhausted, but preceding catastrophic Supplier Application Form, CMS 855. coverage. Chronic kidney disease (CKD) A condition in Creatinine A waste product of protein metabolism which there is a progressive loss of kidney found in the urine. Blood creatinine function which over time; may lead to end- concentration is an indirect measure of kidney stage renal disease. function. Abnormally high creatinine levels Chronic Kidney Disease Epidemiology indicate kidney failure or renal insufficiency. Collaboration (CKD-EPI) equation A Creatinine clearance A measure of kidney method used to estimate glomerular filtration function. rate using a single serum creatinine. Yields a lower CKD prevalence than the Modification Creditable coverage Prescription drug coverage of Diet in Renal Disease (MDRD) Study that is actuarially equivalent to the standard equation. Part D benefit, as defined annually by CMS. Beneficiaries with creditable coverage may Chronic obstructive pulmonary disease forgo participation in Medicare Part D without (COPD) One of a number of classes of chronic having to pay increased monthly premiums progressive lung diseases. upon future enrollment. Examples of creditable Clinical Performance Measures (CPM) Project coverage include the Federal Employee Health Formerly the Core Indicator Project. A project Benefits Program, TRICARE, VA Health Care in which CMS and the ESRD networks Benefits, State Pharmacy Assistance Programs cooperatively maintain a clinical database of (SPAPs), and private insurance eligible for the key elements related to the quality of dialysis retiree drug subsidy. Private insurance for the care. These elements are used as indicators in working aged may or may not be creditable. quality improvement initiatives. Cystatin-C equation A method for estimating Common Working File (CWF) System The glomerular filtration rate (GFR) that uses the Medicare inpatient/outpatient and laboratory marker cystatin-C. physician/supplier benefit coordination and Heart failure (HF) A condition caused by claims validation system. Under the CWF impaired pumping of the heart and consequent System, CMS maintains both institutional and fluid accumulation in the lungs. physician/supplier claims-level data. CWF

2018 USRDS Annual Data Report | Appendices

Darbepoetin alfa (DPO) One of a class of assure the appropriateness of services and medications called erythropoietic proteins. protection for dialysis patients. Used to treat anemia in patients with serious Expanded criteria donor (ECD) A kidney donor kidney disease. over the age of 60 years, or between the ages of Death Notification Form (CMS-2746) A form 50 and 59 years, with two of the following submitted following the death of an ESRD criteria: death by CVA, history of hypertension patient containing basic patient demographic or creatinine at time of recovery (terminal information in addition to information on the creatinine) ≥ 1.5 mg/dL. primary cause of death. Fills per person Each prescription drug purchase Dialysis catheter A type of vascular access used constitutes a fill. Fills per person are calculated in hemodialysis patients, commonly from the quotient of cumulative fills in a implanted into the jugular or subclavian vein. population and the number of people in that Employer group health plan (EGHP) A health population. plan of or contributed to by an employer, Glomerular filtration rate (GFR) Rate in ml/ providing medical care directly or through min/1.73 m2 of the volume of plasma filtered by other methods such as insurance or the kidney. Rates of filtration may be measured reimbursement to current or former directly or estimated based on formulae that employees, or to these employees and their employ combinations of an individual’s age, families. gender, and height, and on levels of serum End-stage renal disease (ESRD) A condition in creatinine, blood urea nitrogen, and serum which a person’s kidney function is albumin. GFR is traditionally considered the inadequate to support life. best overall index to determine renal function. Erythropoiesis stimulating agent (ESA) Used Glycosylated hemoglobin (HbA1c) A laboratory to increase the production of red blood cells; test measuring the percentage of hemoglobin- includes erythropoietin (EPO) and bound glucose in the bloodstream to help darbepoetin alfa (DPO). determine how well a patient’s diabetes is being controlled. Erythropoietin (EPO) A hormone secreted chiefly by the adult kidney; acts on bone Health Maintenance Organization (HMO) An marrow to stimulate red cell production. Also organization that provides or arranges produced in a formulated version to treat managed care on a prepaid basis. anemia. Health Service Area (HSA) A group of counties ESRD Facility Survey Data for this survey are described by the authors of the CDC Atlas of collected annually by CMS from all facilities United States Mortality as “an area that is certified to provide Medicare-covered renal relatively self-contained with respect to dialysis and transplantation. The survey uses hospital care.” CMS form 2744 and encompasses the full Healthy People 2020 A national agenda for health calendar year. Geographic data are included to promotion and disease prevention, with the level of facility ZIP code. Each record objectives and goals aimed at improving the contains facility information and data on the health of the American people number of patients served, dialysis treatments (www.health.gov/ healthypeople). provided, and kidney transplants performed. Hemodialysis The process of removing toxins The data include services to both Medicare from the blood by diffusion through a semi- and non-Medicare patients. permeable membrane. ESRD Networks Regional organizations, Hemoglobin Oxygen-carrying protein in the established by law in 1978, contracted by CMS erythrocyte (red blood cell). to perform quality oversight activities to Hepatitis An inflammation of the liver that may be caused by a viral infection, poisons, or the

Glossary

use of alcohol or other drugs. Forms include (approximately equal to the total ). Hepatitis A, usually transmitted by It reflects the degree of removal of these contaminated food or water; Hepatitis B, substances during dialysis treatment, and is transmitted through blood and body fluids; expressed by Kt/V per hemodialysis session or and Hepatitis C, also transmitted through weekly Kt/V in the context of peritoneal blood and body fluids. dialysis. Hospital-based facility A dialysis unit attached Low-income subsidy (LIS) LIS helps people with to or located in a hospital and licensed to Medicare pay for prescription drugs, and provide outpatient dialysis services directly to lowers the costs of Medicare prescription drug ESRD patients. coverage. Implantable cardioverter defibrillator (ICD) Medical Evidence form (CMS-2728) A form that An implantable device designed to arrest the provides source data about ESRD patients, fibrillation of heart muscle by applying including information on demographics, electric shock, thus depolarizing the heart primary cause of renal disease, comorbidities, cells and allowing normal rhythm to return. biochemical data, dialysis treatment, Incident ESRD patient A patient starting renal transplant, dialysis training, employment replacement therapy for ESRD. Excludes status, initial insurance coverage, and first patients with acute renal failure, those with ESRD service date. chronic renal failure who die before starting Medicare Advantage Part D plan (MA-PD) A ESRD treatment, and those whose treatments Medicare Part D plan offered only to are not reported to CMS. participants in Medicare Part C. Incident population The people in a population Medicare as Secondary Payer (MSP) patient A who are newly diagnosed with a disease in a Medicare beneficiary with a health insurer given time period, typically a year. other than Medicare (e.g. an Employer Group Independent unit A unit licensed to provide Health Plan) having primary responsibility for outpatient and home maintenance dialysis payment of the beneficiary’s medical bills. that is not affiliated with a chain. Medicare Current Beneficiary Survey (MCBS) Initial coverage period The interval following A continuous, multipurpose survey of a the deductible phase, but preceding the nationally representative sample of the coverage gap. Medicare population, conducted by the Office of Enterprise Data and Analytics (OEDA) of the Ischemic heart disease (ISHD) A disease of the Centers for Medicare & Medicaid Services heart evidenced by a lowered oxygen supply to (CMS) through a contract with NORC at the the heart tissue, caused by occlusion or University of Chicago. The central goals of the narrowing of the arteries supplying the heart MCBS are to determine expenditures and muscle. sources of payment for all services used by Kidney Disease Outcomes Quality Initiative Medicare beneficiaries, including co-payments, (KDOQI) Established in 1995 by the National deductibles, and non-covered services; to Kidney Foundation to improve patient ascertain all types of health insurance coverage outcomes and survival by providing and relate coverage to sources of payment; and recommendations for optimal clinical to trace outcomes over time, such as changes in practices in the areas of , health status and spending down to Medicaid vascular access, and anemia. eligibility and the impacts of Medicare program Kt/V A unitless number used to quantify changes on satisfaction with care and usual clearance of small molecular weight source of care. substances (solutes) such as urea, where K = Microalbuminuria A condition in which small dialyzer clearance of urea, t = dialysis time and amounts of albumin are present in the urine; V = volume of distribution of urea indicates early kidney damage.

2018 USRDS Annual Data Report | Appendices

Modality A method of treatment. Treatment for Peripheral vascular disease (PVD) A progressive end-stage renal disease (ESRD) is comprised disease causing narrowing or occlusion of the of three modalities: hemodialysis, peritoneal arteries. dialysis, and transplantation. Peritoneal dialysis A treatment for kidney failure Modification of Diet in Renal Disease in which fluid (dialysate) is introduced into the (MDRD) Study equation A method used to abdominal cavity and uremic toxins are estimate glomerular filtration (GFR) in removed by diffusion across the peritoneum. patients with impaired renal function using a Point prevalent patient A patient reported as single serum creatinine, age, sex and race. receiving treatment for ESRD on a particular National Health and Nutrition Examination day of the calendar year (e.g. December 31). Survey (NHANES) A survey conducted by the Program Medical Management and Information National Center for Health Statistics (NCHS) at System for ESRD, and Renal Beneficiary and the Centers for Disease Control and Prevention Utilization System (PMMIS/REBUS) The major that uses home interviews and health tests to source of data for the USRDS. This CMS file collect information on health and diet in the incorporates data from the Medical Evidence form United States. (CMS 2728), the Death Notification form (CMS National Institutes of Health (NIH) The federal 2746), the Medicare Enrollment Database, CMS focal point for medical research in the U.S. paid claims records, and the OPTN transplant and one of eight health agencies of the Public database. Health Services, which are part of the Prevalent ESRD patient A patient on renal Department of Health and Human Services. replacement therapy or with a functioning Organ Procurement and Transplantation kidney transplant (regardless of the transplant Network (OPTN) The unified transplant date). This definition excludes patients with network established by the United States acute renal failure, those with chronic renal Congress under the National Organ failure who die before receiving treatment for Transplant Act (NOTA) of 1984. A private, ESRD, and those whose ESRD treatments are non-profit organization administered by the not reported to CMS. United Network for Organ Sharing, under Prevalent population The people in a population contract with the Health Resources and who have a disease at a given point in time Services Administration of the U.S. (point prevalence) or during a given time Department of Health and Human Services. period (period prevalence). Part D Medicare coverage A U.S. government Proteinuria The existence of protein in the urine; program which subsidizes the costs of indicative of kidney damage. medications for Medicare beneficiaries. Recombinant human growth hormone (rhGH) Percutaneous coronary intervention (PCI) A Also called somatropin; a substance identical in therapeutic procedure to treat stenotic its amino acid sequence to human growth (narrowed) coronary arteries of the heart hormone and used to treat growth hormone found in coronary heart disease. Commonly deficiency. known as coronary angioplasty or simply angioplasty. Renal Management Information System (REMIS) CMS’s Oracle relational database system Period prevalent patient A patient receiving that replaced the Renal Beneficiary and treatment for ESRD at some point during a Utilization System (REBUS) in 2003. REMIS period of time, usually six months or a year. included an operational interface to the Patients may die during the period or be point Standard Information Management System prevalent at the end of the period. Period (SIMS) Central Repository until 2012, at which prevalence is a useful measure for cost point CROWNWeb replaced the functionality analysis, since it indicates total disease burden of SIMS. over the course of a year.

Glossary

Renin inhibitors A class of drugs used to lower group of patients by computing the ratio of the blood pressure by blocking the - group’s observed mortality rate to the expected angiotensin system, which regulates blood mortality rate for the national ESRD volume and systemic vascular resistance. population. Retiree drug subsidy (RDS) A program designed Standardized transplantation ratio (STR) Used to encourage employers to continue providing to compare transplant rates for a subgroup of prescription drug coverage to retirees eligible patients to national transplant rates, by for Medicare Part D. Under the program, computing the ratio of the group’s observed employers received a tax-free rebate equal to transplant rate to the expected transplant rate 28% of covered prescription drug costs for the national ESRD population. incurred by their retirees. While relatively Statins Medications that lower cholesterol through simple to administer, RDS may ultimately be inhibition of the HMG CoA enzyme. more costly than providing employees a type of Part D plan known as an “employer group Total days supply Each prescription drug is waiver plan.” Following passage of the Patient disbursed in sufficient quantity for Protection and Affordable Care Act, the tax- administration over a set number of days, so free status of the subsidy expired on long as instructions are followed. The total days December 31, 2012. supplied is equal to the cumulative number of days supplied through all fills of a particular Standard Information Management System medication in a population. (SIMS) A component of CROWNWeb, an integrated information management system Transient ischemic attack (TIA) A temporary for the ESRD program that was replaced by loss of neurological function caused by a brief CROWNWeb in 2012. SIMS supports CMS period of inadequate blood supply in a portion reporting requirements and the business of the brain. processes of the ESRD networks; provides United Network for Organ Sharing (UNOS) A communication and data exchange links for private, non-profit organization that holds the the networks, CMS, and other parts of the Organ Procurement and Transplantation Network renal community; supplies standard core data contract to maintain the national organ functionality for previous network data transplant waiting lists and coordinates the systems; and provides improved electronic matching and distribution of organs to patients communication capabilities, data awaiting transplant. standardization, and information Urea reduction ratio (URR) A means of management tools. measuring dialysis efficiency by calculating the Standard Analysis Files (SAFs) CMS files change in blood urea nitrogen (BUN) over the containing final action Medicare course of a dialysis treatment. URR = (pre- inpatient/outpatient claims data: Inpatient, dialysis – post-dialysis BUN) / pre-dialysis BUN Outpatient, Home Health Agency, Hospice, * 100. Skilled Nursing Facility, Clinical Laboratory, Vintage Time during which a patient has had Durable Medical Equipment, and 5 percent ESRD. Sample Beneficiary. Waiting list A list of patients awaiting an organ Standardized hospitalization ratio (SHR) Used transplant that is maintained by UNOS and to compare hospitalization rates for a selected OPTN. group of patients by computing the ratio of the group’s observed hospitalization rate to Some definitions from U.S. National Library of Medicine’s Medical Encyclopedia, the expected hospitalization rate for the https://medlineplus.gov/encyclopedia.html national ESRD population.

Standardized mortality ratio (SMR) Used to compare patient mortality rates for a selected