A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases (2011) / Chapter Skim
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Appendix A: Data Collection Approaches
Appendix A: Data Collection Approaches
Pages 123-174
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From page 123... ...
events (acute myocardial infarction [MI] and death due to coronary heart disease)
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From page 124... ...
Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: In ARIC community surveillance, information collected on sampled hospitalized myocardial infarction and heart failure events include specific items on medical history and comorbid conditions such as chronic pulmonary disease and diabetes. Furthermore, all discharge codes for sampled cases are also recorded.
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From page 125... ...
The Cardiovascular Health Study (CHS) Main Purpose of Study: The Cardiovascular Health Study is an NHLBI-funded observational study of risk factors for cardiovascular disease and stroke in adults 65 years or older.
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From page 126... ...
Cranial MRI scans, retinal photography, and tests of endothelial function were added as new components. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Cardiovascular disease was measured and adjudicated by a panel of doctors based on hospital records.
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From page 127... ...
The cohort of patients is being followed longitudi nally to identify the clinical phenotypes, CT subtypes, and genotypes that determine risk for COPD progression, morbidity, and mortality. While the initial emphasis in the design of the cohort was on COPD, all subjects in the cohort will be smokers, and the cohort analysis will be expanded to include other smoking-related diseases such as cardiovascular disease and cancer.
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From page 128... ...
Mode of Data Collection: In-person examination or biomarker data collection, administrative data, mailed surveys, and automated telephony surveys Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Questions are asked related to comorbidities that include CVD, chronic pulmonary disease, asthma, and diabetes. Information Obtained: Incidence, prevalence, functional health outcomes, and risk factors, including stressors, clinical care information, and demographic characteristics Cost of Survey/Registry: Almost 40 million dollars Who Pays for the Data Collection?
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From page 129... ...
. Core study exam results; Medical history; Obesity questionnaires; Psychosocial; Physical measurement; Pulmonary function testing and questionnaire; Electrocardiogram; Echocardiography; Genetic studies Mode of Data Collection: In-person interview on medical and family history; medical exams; anthropometry; blood test Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Core Study: blood pressure, lipids, lipoproteins, apoproteins, cotinine, SMAC 12, fasting insulin, fasting glucose, oral glucose tolerance test, CBC, Lp(a)
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From page 130... ...
Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Extensive (variables posted on SHARe website, http://www.ncbi.nlm.nih.gov/sites/entrez?
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From page 131... ...
Mode of Data Collection: Participants are given the option to complete a web or paper survey. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The Millennium Cohort Study baseline survey asks the following related questions: • "Has your doctor or other health professional ever told you that you have any of the following conditions?
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From page 132... ...
Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Baseline measurements will include measurement of coronary calcium using computed tomography; measurement of ventricular mass and function using cardiac magnetic resonance imaging; measurement of flow-mediated brachial artery endothelial vasodilation, carotid intimal-medial wall thickness, and distensibility of the carotid arteries using ultrasonography; measurement
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From page 133... ...
Main Purpose of Study: The National Longitudinal Study of Adolescent Health (Add Health) is a study of a nationally representative sample of more than 20,000 individuals that began with in-school questionnaires admin istered to adolescents in grades 7–12 in the United States during the 1994–1995 school year.
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From page 134... ...
Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Wave III • as a doctor ever told you that you have high cholesterol? H • ave you ever been diagnosed with high blood pressure or hypertension?
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From page 135... ...
Height and weight were also measured at Waves II and III, and DNA was collected from a subset of respondents at Wave III. In addition, Wave IV respondents were asked to participate in an inventory of all prescription medica tions they had used in the four weeks prior to the interview, anthropometric measures, blood pressure and pulse readings, collection of dried blood spots obtained from a finger prick, and collection of saliva for buccal cell DNA.
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From page 136... ...
, Criminal offending, involvement with the criminal justice system, and incarceration, Friend or family suicide, Death of parent, spouse, sibling, or child, Unsafe school, Unsafe living environment, Neighborhood/community crime, Neighborhood/community unemployment, Poor access to public parks and physical activity resources, Unfavorable community climate and weather, Unfavorable social policies and programs. Clinical Care Information: Health insurance coverage, Access to health services, Length of time since last routine checkup, Length of time since last dental exam, Psychological or emotional counseling in the past 12 months Demographic Characteristics Collected: Age, Sex, Race/ethnicity, Geographic region, Citizenship, Primary language, Languages spoken/written, Income, Education level, Occupation, Military status, Health insurance status, Family size/structure, Religious affiliation, Sexual orientation.
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From page 137... ...
indexes and links medical records from all sources of care for Olmsted County residents; Informed consent -- Questionnaires and biobanking Mode of Data Collection: Medical record data abstraction by a nurse; questionnaires and biobanking Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: cardiovascular risk factors and comorbidities Information Obtained: Incidence; some functional health outcomes for Heart Failure; risk factors that include diabetes, hypertension, hyperlipidemia, and body mass index; comorbidities, including malignancies, cerebrovascular disease, and liver disease; detailed clinical care information on medications, labs, and procedures; demo graphic information including age, sex, race, ethnicity, education, marital status, income level.
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From page 138... ...
Frequency of Collection and Sources of Data: Annual mailer for vital status; Clinical evaluations every 2–4 years depending on funding. Population interviews; physical examination; blood tests; hospital validation of selected diseases Mode of Data Collection: Annual mailer and periodic in-clinic evaluation Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Has a doctor ever told you that you have had a heart attack, heart failure, angina, stroke, TIA, coronary artery revascularization, diabetes, emphysema, asthma?
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From page 139... ...
Mode of Data Collection: In-person exams and interviews and medical record abstraction. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Many questions and procedures (including ECG, echocardiogram, Carotid ultrasound, pulmonary function testing, fasting glucose, and insulin measurements)
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. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: CVRN research studies: (1)
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; demographic characteristics; medical history; and clinical procedures relative to the treatment of bronchiectasis, namely, respiratory symptoms, pulmonary function testing, HRCT parameters, diagnostic tests, and therapies. Information Obtained: Incidence, prevalence, functional health outcomes, risk factors, including stressors, clinical care information, and demographic characteristics.
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From page 142... ...
Policies regarding the confidential nature of the data collected, processed, and stored at the UNC CSCC are explained to all personnel, who must then sign a "confidentiality certification" to be allowed access to confidential information. COPD Foundation Research Registry Main Purpose of Study: The COPD Foundation Research Registry is a confidential database of individuals diagnosed with COPD or at risk of developing COPD.
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Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Specific questions regarding cardiovascular disease and diabetes are not asked. Specific questions related to chronic pulmonary disease are asked.
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Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: All of these patient conditions are captured across our registries, with the exception of asthma. Cardiovascular disease, chronic pulmonary disease, and diabetes are collected across the registries; CathPCI Registry ®: procedure-based registry collecting data on diagnostic and interventional caths; ICD Registry™: procedure-based registry collecting data on ICD implants and lead information for adult and pediatric patients; ACTION Registry®-GWTG™: process-based registry collecting data on STEMI and non-STEMI patients; CARE Registry®: procedure-based registry collecting data on carotid revascularization procedures (stenting and endarterectomy)
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From page 145... ...
Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Medical history of stroke, TIA, myocardial infarction, diabetes, dyslipidemia, hypertension, atrial fibrillation, cardiac valve prosthesis, congestive heart failure, peripheral vascular disease, sickle cell disease, carotid stenosis, tobacco use; taking antihypertensive medication, taking lipid lowering medication; labs: LDL, HDL, total cholesterol, triglycerides, HbA1c; discharge destination. Information Obtained: Ambulatory status pre- and post-event; in-hospital mortality; discharge destination; comfort measures status; treatment provided, complications (UTI, DVT/PE, pneumonia)
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From page 146... ...
. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Ever been told you have cardiovascular disease/heart attack and stroke (myocardial infarction/heart attack, coronary heart disease, angina, stroke)
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; risk factors, including diet, physical activity, alcohol/drug use, smoking, health screening, interpersonal violence, suicide ideation, falls in elderly, mental health, sexual behaviors, etc.; clinical care information, access to health care, usual source of care, and medical home and care coordination; demographic characteristics, including age, race/ethnicity, geographic region, income, education level, occupation, health insurance status, as well as immigra tion status, sexual orientation, and other characteristics. Cost of Survey/Registry: Varies from cycle to cycle.
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. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Ever been told to have asthma, diabetes, high blood cholesterol, hypertension?
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Source of Data: Population interviews Mode of Data Collection: Random digit dial landline; will use a cell phone supplement. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The Illinois County BRFSS includes the standard BRFSS questions for these.
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. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: In this study, asthma was chosen as a chronic health condition of emphasis.
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Los Angeles County Health Survey (LACHS) Main Purpose of Study: Since 1997, the Los Angeles County Health Survey (LACHS)
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Mode of Data Collection: RDD landline and RDD cell phones Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Adult Survey: Questions from the 2007 Adult LACHS pertaining to the above topics included: "Have you ever been told by a doctor or other health professional that you have:" heart disease; diabetes; high blood pressure or hypertension; high blood cholesterol. Furthermore, among those responding in the affirmative to being ever diagnosed with diabetes, follow-up ques tions included, "How old were you when you were told you have diabetes?
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Data are collected at the national level. Mode of Data Collection: In-person interviews Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Priority Conditions (Quality Supplement)
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Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Mortality: Complete death certificate data are available, including information from next of kin on some sub-studies. Morbidity: Comprehensive data are collected on pre-hospital characteristics, hospital course, and discharge plans.
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From page 155... ...
In reality, when clinicians complete these forms, they do so by abstracting data from their own records. To improve response rates, each sampled clinician is given the option of having forms completed by a member of his or her office staff or by a trained NAMCS field representative.
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From page 156... ...
For example, body mass index is available only when the patient's height and weight were recorded for the sampled visit. A series of check-boxes indicate whether the patient currently has asthma, chronic renal failure, diabetes, hyperlipidemia, hypertension, ischemic heart disease, or obesity.
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From page 157... ...
; • other services ordered or provided, including health education, and blood and imaging tests; and • continuity of care, including whether the physician is the patient's primary care provider, whether the patient is new or has been seen before, and how often the patient has been seen in the past year. In 2010, NAMCS is gathering data on the results of laboratory tests of total cholesterol, high-density lipoprotein, low-density lipoprotein, triglycerides, glycohemoglobin, and fasting plasma glucose, if the clinician ordered these tests in the 12 months prior to the sampled visit.
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From page 158... ...
National Diabetes Surveillance System (NDSS) Main Purpose of Study: The National Diabetes Surveillance System is a comprehensive assembly of diabetesrelated data from national and state-based surveys, including household surveys such as the National Health and Nutrition Examination Surveys (NHANES)
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From page 159... ...
Examination and laboratory components that include the dietary recall, body measurements, and the environmental health profile. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The NHANES questionnaire collects information on chronic conditions, including blood pressure and cholesterol, cardiovascular disease, diabetes, and respiratory health and disease.
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From page 160... ...
Prevalence infor mation can be calculated for the conditions listed under specific questions that include hypertension/high blood pressure, coronary heart disease, angina or angina pectoris, heart attack, stroke, asthma, chronic bronchitis, diabetes, emphysema. Limitations caused by most of these conditions is available; however, if a person has multiple limitations caused by multiple conditions, specific limitations cannot be attributed to specific conditions.
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Main Purpose of Study: The National Hospital Ambulatory Medical Care Survey is a general purpose survey of nonfederal noninstitutional hospitals with outpatient departments (NHAMCS-OPD) and emergency departments (NHAMCS-ED)
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• NHAMCS-OPD. For each sampled visit, the patient record form includes a series of check-boxes to indicate whether the patient currently has asthma, cerebrovascular disease, congestive heart failure, COPD, diabetes, hyperlipidemia, hypertension, or ischemic heart disease.
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From page 163... ...
For example, body mass index is available when the patient's height and weight were recorded for the sampled visit. A series of check-boxes are available to indicate whether the patient currently has certain conditions, including asthma, cerebrovascular disease, COPD, diabetes, hyperlipidemia,
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From page 164... ...
Clinical care: For NHAMCS-OPD, information is obtained on clinical care information including verbatim reason for visit; up to three visit diagnoses (ICD-9-CM coded) ; regardless of visit diagnosis, a series of checkboxes indicate whether the patient has asthma, cerebrovascular disease, chronic renal failure, congestive heart failure, COPD, diabetes, hyperlipidemia, hypertension, ischemic heart disease, or obesity major; reason for visit (new problem, chronic problem, routine; chronic problem flare-up, pre-/post-surgery; preventive care)
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National Hospital Discharge Survey (NHDS) Main Purpose of Study: The National Hospital Discharge Survey is a continuing general purpose survey of inpatient hospital care in the United States, ongoing since 1965.
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-04 forms, the format in which hospitals submit claims for payment. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: See medical record abstraction form at http://www.cdc.gov/nchs/data/hdasd/nhds_form_updated.pdf.
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From page 167... ...
testing the ACS module in a larger sample of discharges from a more varied set of hospitals and (2) testing the feasibility of gathering similar data from patients with other discharge diagnoses, such as old myocardial infarction; angina pectoris; other forms of chronic ischemic heart disease; hypertensive heart disease; cardiac dysrhythmia; heart failure; and acute edema of the lung, unspecified.
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Mode of Data Collection: Telephone interviews using RDD landline and cellular telephone sample, plus 24-hour urine collection and in-person clinician measurements of height, weight, waist circumference, and rest ing blood pressure Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: In addition to the CHS 2010 questions, participants in the Heart Follow-up Study complete a brief questionnaire including questions on nutrition and personal and family history of CVD. Information Obtained: Measures will include items from the 2010 CHS as well as a separate series of ques tions related to dietary sodium consumption.
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From page 169... ...
Mode of Data Collection: Self-administered, paper questionnaire Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: The YRBS is designed to monitor priority health-risk behaviors that contribute to the leading causes of mortality, morbidity, and social problems among youth in New York City. The questionnaire measures tobacco, alcohol and drug use; behaviors that contribute to
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From page 170... ...
Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Smoking status, smoking cessation intervention, A1c control (< 7%) , A1c testing, antithrombotic tx (IVD or DM)
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Mode of Data Collection: Interview and health exam Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Arkansas: blood pressure knowledge/ history, cholesterol knowledge/history, cardiovascular disease knowledge/history, diabetes knowledge/history; Kansas: blood cholesterol, LDL/HDL, triglycerides, blood sugar, HbA1C, Medical history (MI, Angina/CHD, Stroke, TIA, Atrial fibrillation, deep venous thrombosis, pulmonary embolus, peripheral arterial disease, left ven tricular heart hypertrophy, other heart disease, hospitalization on selected heart conditions, symptoms of angina, congestive heart failure, peripheral arterial disease, heart attack and stroke symptoms, personal history of blood pressure, cholesterol, diabetes, family history of blood pressure, heart attack, high cholesterol, diabetes, apnea) ; Oklahoma: actions to control high blood cholesterol, history of cholesterol checked, actions to control high cho lesterol, history of CHD/angina, stroke, other cardiovascular diseases, diabetes, aspirin use, rehab following heart attack, stroke, family health history; Washington: HDL, LDL, VLDL, triglycerides, glucose, blood pressure, pulse Information Obtained: Smoking and tobacco use, drinking, weight history, diet behavior and nutrition, supplement use, physical activity, stress aspirin use.
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From page 172... ...
. Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: Clinical measures for cardiovascular disease, chronic pulmonary disease, asthma, and diabetes; 2010 HEDIS summary measures include appropriate testing for children with pharyngitis, appropriate treatment for children with upper respiratory infection, avoidance of antibiotic treatment in adults with acute bronchitis, use of spirometry testing in the assessment and diagnosis of COPD, pharmacotherapy of COPD exacerbation, persistence of beta-blocker treatment after a heart attack, comprehensive diabetes care, relative resource use for people with diabetes, relative resource use for people with asthma, relative resource use for people with cardiovascular conditions, relative resource use for people with uncomplicated hypertension, and relative resource use for people with COPD (HEDIS Measures 2010, NCQA website)
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From page 173... ...
Mode of Data Collection: Standardized web-based data collection tools; Provision for direct reporting from some EMR installations Specific Questions Related to CVD, COPD, Asthma, and/or Diabetes: All clinical data, no surveys from patients. 2010 HEDIS measures for physicians include appropriate treatment for children with upper respiratory infection; controlling high blood pressure; cholesterol management for patients with cardiovascular conditions; comprehensive ischemic vascular disease; comprehensive diabetes care; use of appropriate medications for people with asthma; use of spirometry testing in the assessment and diagnosis of COPD; and pharmacotherapy manage ment of COPD exacerbation (HEDIS Measures 2010, NCQA website)
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