Understanding the High Prevalence of Low-Prevalence Chronic Disease Combinations: Databases and Methods for Research. Center for Disease Control and Prevention Datasets

09/20/2013

Behavioral Risk Factor Surveillance System
Database Description
White Paper(s): Data Systems and the Prevalence of Chronic Disease Combinations & Multiple Chronic Conditions and Disparities
Sponsorship: Center for Disease Control and Prevention
Description: The Behavioral Risk Factor Surveillance System (BRFSS) is the world’s largest, on-going telephone health survey system, tracking health conditions and risk behaviors in the United States yearly since 1984. Currently, data are collected monthly in all 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and Guam.
Database: (Scope, Size, Setting, Population, Age Range) National; approximately 350,000 non-institutionalized adults (aged 18 years or older) are interviewed each year. One adult is interviewed per household.
Database Type: (Survey, Registry, Research Study, Program Database, Claims, Administrative Data, and Clinical Databases) Multi-mode survey (mail, landline, and cell phone)
Database Source/Origin: Initiated in 1894 with 15 states collecting surveillance data on risk behaviors through monthly telephone interviews. By 2001 the 50 states, District of Columbia, Puerto Rico, and Virgin Islands were participating in the BRFSS.
Date or Frequency of Data Collection: 1984–2012; survey conducted monthly and report compiled by the CDC annually
Longitudinal vs. Cross-sectional Database: Cross-sectional
Data Collection Methodology: With technical assistance from the CDC, state health departments use in-house interviewers or contract with telephone call centers of universities to conduct BRFFS survey.
Sampling Strategy: The survey is conducted using Random Digit Dialing (RDD) techniques on both landlines and cell phones.
Unit of Analysis: Respondent
Diagnosis Information
Diagnosis Variable Type: (Chronic Condition Status, Principal Diagnosis, Primary Diagnosis, Secondary Diagnosis, Admit/Discharge Diagnosis and Self-Reported Diagnosis) Self-reported conditions
Diagnosis Codes: (ICD-9, ICD-10, SNOMED) The BRFSS does not utilized diagnosis codes.
Number of Diagnoses Captured: BRFSS asks respondents about the following conditions: MI, CHD, Stroke, Asthma, Skin Cancer, Other Cancer, COPD, Arthritis, Depression, Kidney Disease, Vision Impairment, Diabetes, and HIV/AIDS.
Cost, Utilization & Clinical Information
Measures of Cost: (Claims, Out-of-pocket expenses, Self- reported expenditures, and Prescription Drug Costs) The BRFSS only asks if cost is a barrier to obtaining healthcare services for specific conditions.
Measures of Healthcare Utilization: (Number of Visits, Any Procedures/Number of Procedures/Type of Procedure, Number of Admission/Type of Admission, Length of Stay, Hospitalizations, Emergency Department Utilization, etc.) Utilization of preventive healthcare services information is collected.
Measures of Healthcare Access: Questions are included related to insurance, regular care provider, and last health checkup.
Demographic Information: (Sex, Age, Race, Ethnicity, Marital Status, Disability Status, Language, Insurance Type, Educational Attainment, Income). Age, Gender, Hispanic vs. Latino, Race, Military Status, Insurance Status/Type, Educational Obtainment, Disability Status and Income.
Clinical Information: (BMI, Medical Conditions [high blood pressure], Smoker Status, History of Various Conditions, Preventative Health Measures , Activities of Daily Living, Instrumental Activities of Daily Living) Hypertension Status, High Cholesterol Status, Risky Health, Behaviors (i.e. tobacco use), Pregnancy Status, Fruit and Vegetable Consumption, Physical Activity Level, and Immunizations.
Measures of Socioeconomic Status: (Occupation, Employment Status, Income, Wealth, Place of Residence, Household Size & Composition, geographic location) Household Size, Employment Status, Household Income, Zip Code, and Own vs. Rent Home.
Site of Service Information: The BRFSS does not include information on site of service.
Measures of Healthcare Outcomes: (Mortality, Morbidity, Mobility, Functional Status, Quality of Life, Quality Measures, Quality of Care, Readmissions)

Self-reported Health Status

Self-reported Health-Related Quality of Life

Strengths, Limitations & Feasibility
Data Strengths: THE BRFSS raking methodology includes categories of age by gender, detailed race and ethnicity groups, education levels, marital status, regions within states, gender by race and ethnicity, telephone source, renter/owner status, and age groups by race and ethnicity. In 2011, 50 states, the District of Columbia, Guam, and Puerto Rico collected samples of both landline and cell phone interviews, while the Virgin Islands collected a sample of landline-only interviews.
Data Limitations: Limitations on the reliability and validity of self-reported behaviors, with some over-reported, and others underreported. Only administered in English and Spanish. An increasing numbers of households lack landlines.
Data Access Restrictions: BRFSS data is publicly available.
Data Linking Feasibility: (Unique identifiers or sufficient demographics to allow for data linkages) No direct identifiers, except telephone number.
Related Grouping Systems: n/a

References:

Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System. 2013. http://www.cdc.gov/brfss/

 

National Ambulatory Medical Care Survey
Database Description
White Paper(s): Data Systems and the Prevalence of Chronic Disease Combinations
Sponsorship: Centers for Disease Control and Prevention
Description: The National Ambulatory Medical Care Survey (NAMCS) is a national survey designed to provide information about the provision and use of ambulatory medical care services in the United States. Data are obtained on patients' symptoms, physicians' diagnoses, and medications ordered or provided. Information on services provided, including information on diagnostic procedures, patient management, and planned future treatment.
Database: (Scope, Size, Setting, Population, Age Range) National; the NAMCS includes data on approximately 11,000 physicians from office-based settings and more than 6,000 CHC providers.
Database Type: (Survey, Registry, Research Study, Program Database, Claims, Administrative Data, and Clinical Databases) Survey of physicians and providers.
Database Source/Origin: Findings are based on a sample of visits to non-federal employed office-based physicians who are primarily engaged in direct patient care. Physicians in the specialties of anesthesiology, pathology, and radiology are excluded from the survey.
Date or Frequency of Data Collection: The survey was conducted annually from 1973 to 1981, in 1985, and annually since 1989.
Longitudinal vs. Cross-sectional Database: Cross-sectional.
Data Collection Methodology: Specially trained interviewers visit physicians prior to their participation in the survey in order to provide them with survey materials and instruct them on how to complete the forms. Data collection is from physicians, rather than from patients, which provides an analytic base that expands information on ambulatory care collected through other ambulatory surveys. Each physician is randomly assigned to a 1-week reporting period. During this period, data for a systematic random sample of visits are recorded by the physician or office staff on an encounter form provided for that purpose.
Sampling Strategy: Data is obtained from sample of visits to non-federal employed office-based physicians who are primarily engaged in direct patient care.
Unit of Analysis: Physicians
Diagnosis Information
Diagnosis Variable Type: (Chronic Condition Status, Principal Diagnosis, Primary Diagnosis, Secondary Diagnosis, Admit/Discharge Diagnosis and Self-Reported Diagnosis) Common primary diagnosis.
Diagnosis Codes: (ICD-9, ICD-10, SNOMED) ICD-9-CM. Drug data are coded using a unique classification scheme developed at NCHS.
Number of Diagnoses Captured: Information is collected on the following chronic conditions: Cerebrovascular disease, Congestive heart failure, Chronic renal failure, HIV, and diabetes.
Cost, Utilization & Clinical Information
Measures of Cost: (Claims, Out-of-pocket expenses, Self- reported expenditures, and Prescription Drug Costs) Source of payment
Measures of Healthcare Utilization: (Number of Visits, Any Procedures/Number of Procedures/Type ofProcedure, Number of Admission/Type ofAdmission, Length of Stay, Hospitalizations, Emergency Department Utilization, etc.) Number of past visits in last 12 months, major reason for visit, time spent with the physician, previous care – seen in ED in last 72 hours/ discharged from hospital in last 7 days, counseling/ education/ therapy, surgical procedures, patient’s primary care physician provider, was patient referred for visit, and patient seen before.
Measures of Healthcare Access: NAMCS does not have measures of healthcare access.
Demographic Information: (Sex, Age, Race, Ethnicity, Marital Status, Disability Status, Language, Insurance Type, Educational Attainment). Age, Sex, and Ethnicity/Race.
Clinical Information: (BMI, Medical Conditions [high blood pressure], Smoker Status, History of Various Conditions, Preventative Health Measures , Activities of Daily Living, Instrumental Activities of Daily Living) Pain level, Tobacco use, Respiratory rate, Episode of care, Glasgow coma scale (GCS), and On oxygen on arrival.
Measures of Socioeconomic Status: (Occupation, Employment Status, Income, Wealth, Place of Residence, Household Size & Composition, geographic location) Place of residence
Site of Service Information: Hospitals and community health centers identified.
Measures of Healthcare Outcomes: (Mortality, Morbidity, Mobility, Functional Status, Quality of Life, Quality Measures, Quality of Care, Readmissions) Discharge status
Strengths, Limitations & Feasibility
Data Strengths: Data are collected on key policy issues pertaining to health. There are multiple years of data available.
Data Limitations: The item nonresponse rate for ethnicity and race is approximately 20%.
Data Access Restrictions: Data are available to the public at no cost. Restricted files which contain additional variables and non-masked data can be accessed by applying to the NCHS Research Data Center and paying a fee.
Data Linking Feasibility: (Unique identifiers or sufficient demographics to allow for data linkages) The NAMCS does not include unique identifiers to link patients.
Related Grouping Systems: ICD-based grouping systems.

References:

Centers for Disease Control and Prevention. Ambulatory Health Care Data. 2013. http://www.cdc.gov/nchs/ahcd.htm

 

National Health Interview Survey
Database Description
White Paper(s): Data Systems and the Prevalence of Chronic Disease Combinations & Multiple Chronic Conditions and Disparities
Sponsorship: Centers for Disease Control and Prevention
Description: The National Health Interview Survey is the principal source of information on the health of the civilian non- institutionalized population of the United States and is one of the major data collection programs of the National Center for Health Statistics.
Database: (Scope, Size, Setting, Population, Age Range) National; approximately 100,000 individuals.
Database Type: (Survey, Registry, Research Study, Program Database, Claims, Administrative Data, and Clinical Databases) Household survey
Database Source/Origin: Surveys of households.
Date or Frequency of Data Collection: Annually since 1957, but revised every 10–15 years. Sampling and interviewing are continuous throughout the year
Longitudinal vs. Cross-sectional Database: The National Health Interview Survey is a cross-sectional household interview survey.
Data Collection Methodology: Sampled by household – one child and one adult are selected to complete the Sample Adult and Sample Child components of the survey. Sampling methods are redesigned after every census.
Sampling Strategy: Sampling and interviewing are continuous throughout each year. The sampling plan follows a multistage area probability design that permits the representative sampling of households and non-institutional group quarters (e.g., college dormitories). The sampling plan is redesigned after every decennial census. The current sampling plan was implemented in 2006. It has many similarities to the previous sampling plan, which was in place from 1995 to 2005. The first stage of the current sampling plan consists of a sample of 428 primary sampling units (PSU's) drawn from approximately 1,900 geographically defined PSU's that cover the 50 States and the District of Columbia. A PSU consists of a county, a small group of contiguous counties, or a metropolitan statistical area.
Unit of Analysis: Households, Individuals and Geographic Region.
Diagnosis Information
Diagnosis Variable Type: (Chronic Condition Status, Principal Diagnosis, Primary Diagnosis, Secondary Diagnosis, Admit/Discharge Diagnosis and Self-Reported Diagnosis) Self-reported diagnosis information.
Diagnosis Codes: (ICD-9, ICD-10, SNOMED) Self-report diagnosis.
Number of Diagnoses Captured: Self-reported diagnosis information collected on: Hypertension/ high blood pressure, High cholesterol, Coronary heart disease, Angina, Heart attack, Heart condition/ heart disease, Stroke, Emphysema, COPD, Asthma, Ulcer, Cancer or malignancy of any kind/ benign tumors/cysts, Diabetes, Seizure disorder or epilepsy, Sinusitis, Chronic bronchitis, Weak or failing kidneys, bladder or renal problem, Liver condition, Fibromyalgia, lupus, Multiple Sclerosis, Muscular Dystrophy, Osteoporosis or tendinitis, Polio, paralysis, para/quadriplegia, Parkinson’s disease, other tremors, Hernia, Varicose veins, hemorrhoids, Thyroid problems, Grave’s disease, gout, Hearing problems, Depression, anxiety, or an emotional problem, Pain, ache, stiffness in or around a joint, bone injury, Arthritis, Birth defect, intellectual disability/ developmental problem, Senility, Weight problems, Missing limbs, Circulation problems / blood clots, Severe headache or migraine, Stomach or intestinal illness, Pregnant, Vision/ blindness, Teeth loss, Weak immune system (due to leukemia, lymphoma, HIV), Nerve damage/carpal tunnel syndromes, and Hepatitis.
Cost, Utilization & Clinical Information
Measures of Cost: (Claims, Out-of-pocket expenses, Self- reported expenditures, and Prescription Drug Costs) Affordability of prescription medicines, Affordability of doctors, Affordability of dental care, and Affordability of insurance.
Measures of Healthcare Utilization: (Number of Visits, Any Procedures/Number of Procedures/Type ofProcedure, Number of Admission/Type ofAdmission, Length of Stay, Hospitalizations, Emergency Department Utilization, etc.) Emergency room visit/ hospital visit , Asthma action plan/ class on managing asthma, Routine checkup for asthma, Taking insulin. Use hearing aid, Usual place to go when sick, Health care change due to health insurance change, Received home health visits, Received surgery, Received flu/ tetanus/ hepatitis/ HPV shot and Pap smear/ mammogram.
Measures of Healthcare Access: Lack of transportation to health care, Lack of available doctors, Lack of doctors’ offices open at convenient times, Worried about paying medical bills, Health care coverage compared to past year, Skipped medication to save money, and Communicate with a healthcare provider online.
Demographic Information: (Sex, Age, Race, Ethnicity, Marital Status, Disability Status, Language, Insurance Type, Educational Attainment). Age, sex, sexual orientation.
Clinical Information: (BMI, Medical Conditions [high blood pressure], Smoker Status, History of Various Conditions, Preventative Health Measures , Activities of Daily Living, Instrumental Activities of Daily Living) Smoker status, Exercise, Drinker status, Height and Weight.
Measures of Socioeconomic Status: (Occupation, Employment Status, Income, Wealth, Place of Residence, Household Size & Composition, geographic location) Employment status, Business/ industry, Activities at job, Size of business, Paid by the hour or salaried, Paid sick leave, Multiple jobs held, and time at current residence.
Site of Service Information: Site of Service is not collected of the NHIS.
Measures of Healthcare Outcomes: (Mortality, Morbidity, Mobility, Functional Status, Quality of Life, Quality Measures, Quality of Care, Readmissions) Morbidity and Mortality.
Strengths, Limitations & Feasibility
Data Strengths: Includes questions that can be used to analyze demographic and socioeconomic characteristics and health trends.
Data Limitations: Cross-sectional data; it cannot be used study patients over time. Sample sizes are too small to provide accurate state- level statistics.
Data Access Restrictions: NHIS data files are available to download at no charge. All files from 1963–2011 are available online
Data Linking Feasibility: (Unique identifiers or sufficient demographics to allow for data linkages) AHRQ provides a crosswalk to merge the MEPS and NHIS data. Mortality data, Medicare enrollment and claims data, and social security and benefit history data are all linked to NHIS data. The National Immunization Provider Records Check Survey is also linked to NHIS data.
Related Grouping Systems: n/a

References:

Centers for Disease Control and Prevention. National Health Interview Survey. 2013. http://www.cdc.gov/nchs/nhis.htm

 

National Health and Nutrition Examination Survey
Database Description
White Paper(s): Data Systems and the Prevalence of Chronic Disease Combinations & Multiple Chronic Conditions and Disparities
Sponsorship: Center for Disease Control and Prevention
Description: The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The survey is unique in that it combines interviews and physical examinations. Findings from this survey are used to determine prevalence ofmajor diseases and risk factors for diseases.
Database: (Scope, Size, Setting, Population, Age Range) National; 5,000 Surveys conducted annually.
Database Type: (Survey, Registry, Research Study, Program Database, Claims, Administrative Data, and Clinical Databases) Survey and Physical Examination
Database Source/Origin: Health interviews are conducted in respondents’ homes. Health measurements are performed in specially- designed and equipped mobile centers, which travel to locations throughout the country. The study team consists of a physician, medical and health technicians, as well as dietary and health interviewers.
Date or Frequency of Data Collection: As of 1999, NHANES has been conducted on an annual basis.
Longitudinal vs. Cross-sectional Database: Cross-sectional Survey
Data Collection Methodology: NHANES includes clinical examinations, selected medical and laboratory tests, and self-reported data. Medical examinations and laboratory tests follow very specific protocols and are as standard as possible to ensure comparability across sites and providers. Beginning in 1999, NHANES became a continuous, annual survey. Data are collected every year from a representative sample of the civilian non-institutionalized U.S. population, newborns and older, by in-home personal interviews and physical examinations in the mobile examination centers.
Sampling Strategy: The sample design is a complex, multistage, clustered design using unequal probabilities of selection. Low- income persons, adolescents 12-19 years of age, persons 60 years of age and over, African Americans, and persons of Mexican origin are oversampled. The sample is not designed to provide nationally representative estimates for the population of U.S Hispanics.
Unit of Analysis: Respondent/Interviewee
Diagnosis Information
Diagnosis Variable Type: (Chronic Condition Status, Principal Diagnosis, Primary Diagnosis, Secondary Diagnosis, Admit/Discharge Diagnosis and Self-Reported Diagnosis) Self-Reported Conditions
Diagnosis Codes: (ICD-9, ICD-10, SNOMED) Self-Reported Conditions
Number of Diagnoses Captured: NHANES primarily studies nine categories of conditions: Obesity, Cardiovascular Health, Oral Health, Arthritis/Body Pain, Bone Density/Osteoporosis, Pulmonary Function, Endocrine Health, Renal Disease, and Allergy Inflammation.
Cost, Utilization & Clinical Information
Measures of Cost: (Claims, Out-of-pocket expenses, Self- reported expenditures, and Prescription Drug Costs) NHANES does not capture information on cost.
Measures of Healthcare Utilization: (Number of Visits, Any Procedures/Number of Procedures/Type of Procedure, Number of Admission/Type of Admission, Length of Stay, Hospitalizations, Emergency Department Utilization, etc.)

Hospital Utilization/Stays

ED Utilization

Measures of Healthcare Access: NHANES includes specific questions on healthcare access.
Demographic Information: (Sex, Age, Race, Ethnicity, Marital Status,Disability Status, Language, Insurance Type, Educational Attainment). Educational Attainment, Marital Status, Language, Race/Ethnicity, including subgroups and Health Insurance Status.
Clinical Information: (BMI, Medical Conditions [high blood pressure], Smoker Status, History of Various Conditions, Preventative Health Measures , Activities of Daily Living, Instrumental Activities of Daily Living) Health Risk Behaviors, Health Risk Exposure Data, Weight History, Oral Health History, other clinical metrics are obtained during the interview by clinicians (i.e. blood pressure).
Measures of Socioeconomic Status: (Occupation, Employment Status, Income,Wealth, Place of Residence, Household Size & Composition, geographic location) Veteran Status, Occupation, Employment Status and Income.
Site of Service Information: For each condition, NHANES asks patients if they received care at a certain type of facility (ED, doctor’s office, etc.).
Measures of Healthcare Outcomes: (Mortality, Morbidity, Mobility, Functional Status, Quality of Life, Quality Measures, Quality of Care, Readmissions)

Self-reported Health Status

Self-reported Physical Functioning

Strengths, Limitations & Feasibility
Data Strengths: Estimates for previously undiagnosed conditions are produced from NHANES.
Data Limitations: A major limitation of NHANES is that it is not geographically representative of the U.S. The sample selected to be demographically representative, but because two teams can only visit a total of 16 sites a year, it is impossible to achieve a good geographic spread. NHANES may not be optimal for detecting changes over time because one doesn’t know if the changes observed are due to geographic irregularities of the survey.
Data Access Restrictions: Certain public use data files are open to the file. Many survey data elements are not available for public use.
Data Linking Feasibility: (Unique identifiers or sufficient demographics to allow for data linkages) NHANES data have been linked with multiple years of Social Security Administrative Data, CMS Medicare enrollment and claims files include Part D data, and the National Death Index.
Related Grouping Systems: n/a

References:

Centers for Disease Control and Prevention. National Health and Nutrition Examination Survey (NHANES). 2013. http://www.cdc.gov/nchs/nhanes.htm

 

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