Indicators for chronic disease surveillance -- United States, 2013
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    • Journal Article:
      MMWR. Recommendations and reports : Morbidity and mortality weekly report. Recommendations and reports
    • Description:
      Chronic diseases are an important public health problem, which can result in morbidity, mortality, disability, and decreased quality of life. Chronic diseases represented seven of the top 10 causes of death in the United States in 2010 (Murphy SL, Xu J, Kochanek KD. Deaths: final data for 2010. Natl Vital Stat Rep 2013;6. Available at Adobe PDF file). Chronic diseases and risk factors vary by geographic area such as state and county, where essential public health interventions are implemented. The chronic disease indicators (CDIs) were established in the late 1990s through collaboration among CDC, the Council of State and Territorial Epidemiologists, and the Association of State and Territorial Chronic Disease Program Directors (now the National Association of Chronic Disease Directors) to enable public health professionals and policymakers to retrieve data for chronic diseases and risk factors that have a substantial impact on public health. This report describes the latest revisions to the CDIs, which were developed on the basis of a comprehensive review during 2011–2013. The number of indicators is increasing from 97 to 124, with major additions in systems and environmental indicators and additional emphasis on high-impact diseases and conditions as well as emerging topics.

      Background and Rationale: Chronic diseases represented seven of the top 10 causes of death in the United States in 2010 . Diseases of the heart, malignant neoplasms (cancers), chronic lower respiratory disease, cerebrovascular diseases, diabetes mellitus, Alzheimer's disease, and kidney disease (nephritis, nephrotic syndrome, and nephrosis) together accounted for 65.8% of all deaths among U.S. males and 67.2% of all deaths among U.S. females in 2010. Chronic disease risk factors, including smoking, poor diet, insufficient physical inactivity, and excessive alcohol consumption, were the leading actual causes of death in 2000. To monitor diseases and risk factors over time and to plan and implement effective interventions, public health agencies need access to the most relevant, up-to-date, and uniformly defined chronic disease surveillance data at the state and county level.

      The chronic disease indicators (CDIs) are a set of surveillance indicators developed by consensus among CDC, the Council of State and Territorial Epidemiologists (CSTE), and the National Association of Chronic Disease Directors (NACDD) and are available on the Internet. The CDI website enables public health professionals and policymakers to retrieve uniformly defined state-level and selected metropolitan-level data for chronic diseases and risk factors that have a substantial impact on public health. These indicators are essential for surveillance, prioritization, and evaluation of public health interventions for chronic disease. Most, if not all, of the current indicators are available and reported on other websites, either by the data providers or by categorical chronic disease programs. However, the CDI website is the only integrated source for comprehensive access to a wide range of indicators for the surveillance of chronic diseases, conditions, and risk factors at the state level and for selected large metropolitan areas. CDI data are obtained from several primary surveillance data sources including vital statistics, disease registries, national health surveys, inpatient and emergency department databases, Medicare claims data, policy tracking systems, and the U.S. Census. CDC, CSTE, and NACDD jointly agree on the set of diseases, conditions, and risk factors that comprise the CDI set. CDC gathers, reports, and updates data for states and (where available) large metropolitan areas.

      The original 73 indicators adopted in 1998 and published in 1999 were formally reviewed for potential updates in 2002. Details of the history of the CDIs and the 2002 update are available elsewhere. Beginning in 2011 and continuing through the summer of 2013, CDC, CSTE, and NACDD collaborated to conduct a series of reviews that were informed by subject-matter expert opinion to make recommendations for updating the indicators. The updated indicators will better meet the expanded scope and priorities of chronic disease prevention programs in state health departments. The standardized indicator definitions will also encourage consistency in chronic disease surveillance at the national, state, and local public health levels.

      This report outlines the process of the recent review of the indicators, highlights the major areas of change since the previous update, lists the indicators by indicator group, and provides consensus definitions for each indicator. The detailed definitions include the following information: demographic group, numerator, denominator, measures of frequency, period of case definition, background, significance, limitations of indicator, data resources, limitations of data resources, related indicators or recommendations, and related CDI topic areas. These definitions will enable public health officials and researchers to create estimates that are consistent with the data that CDC publishes on the CDI website. These indicator definitions might be particularly useful for the development of indicator estimates by jurisdictions at the substate level (e.g., county health departments) for which nationwide substate level estimates are not possible.

      Methods: To ensure that the CDIs are comprehensive and relevant to public health priorities such as Healthy People 2020, CDC, CSTE, and NACDD conducted a preliminary review in 2011 to obtain initial input on the need to update the indicators and to solicit comments from subject-matter experts at CDC and state health departments about the CDI website and the use of the indicators. Following this process, a focused review of the CDIs occurred during 2012–2013. CDC provided funding through a cooperative agreement with NACDD to coordinate the review process. The overall review process received guidance by an ad hoc CDI steering committee that was composed of three members: the CDC project manager for the CDIs; the chairperson of the CSTE Chronic Disease, Maternal and Child Health, and Oral Health Committee; and the chairperson of the NACDD Science and Epidemiology Committee. NACDD convened 15 content-specific working groups with representatives from state health departments, CDC program areas, and national public health organizations to update the existing 97 indicators and to consider new indicators.

      The NACDD Science and Epidemiology Committee; the CSTE Chronic Disease, Maternal and Child Health, and Oral Health Committee; and CDC nominated and recruited the working group participants. Participants were either nominated on the basis of their chronic disease subject-matter expertise or recruited from state health departments. Efforts were made to have representation from each of the three organizations (CDC, CSTE, and NACDD) on each working group when possible. Working groups also contained representatives with expertise in systems and environmental indicators. Additional participants were individually recruited as needed to ensure adequate subject-matter expertise and a balance of federal and state public health representation for each working group. Chairpersons for each working group were recruited from among the working group members. Seven of the working group chairpersons were from state health departments, five were from CDC, one was from the U.S. Renal Data System, and two were NACDD staff members. Approximately 100 reviewers participated in the process and are listed at the end of this document.

      The working group members were asked to provide input on the following: 1) new indicators to be added within existing categories; 2) current indicators that need to be modified; 3) current indicators that should be removed; and 4) new categories of indicators that should be considered. Working groups were asked to consider new population indicators as well as new systems and environmental indicators, which were not contained in previous versions of the CDIs. Furthermore, each recommendation was expected to follow the underlying principles of the CDIs: 1) allow states, territories and large metropolitan areas to uniformly define, collect, and report chronic disease data that are related to diseases and conditions with a substantial public health impact; 2) ensure that the data are consistent with Healthy People 2020 goals and objectives, if possible; and 3) ensure that the data are available at the state level for the majority of states and preferably for territories and large metropolitan areas.

      Working groups convened independently through a combination of conference calls and e-mail communications. The CDI steering committee met approximately every month by phone with the NACDD consultant to review progress, identify issues, and determine action steps. Working group recommendations were presented by the working group chairperson or designee in Atlanta in September 2012. Following this meeting, the CDI steering committee reviewed the collective input for areas of overlap and omission. During follow-up communication with relevant working groups that occurred during September 2012 through May 2013, a small number of additional indicators were identified for deletion or modification because of overlap, a few new indicators and indicator groups were proposed, and additional details for the indicator definitions were obtained. Reviewers were recruited to discuss additional indicators that were identified by the steering committee, particularly in the areas of reproductive health and multiple chronic conditions. The apparent discrepancy between the number of working groups initially convened and the final number of indicator groups is a result of the subsequent creation of three related categories for school health, mental health, and disability, whose indicators are contained in the other various topic areas and were consolidated by these areas. The expanded set of indicators was compiled for a CSTE position statement (13-CD-01: Revision to the National Chronic Disease Indicators), which was reviewed by the CSTE membership before the annual meeting in June 2013 and voted on and approved for adoption during the meeting. Subsequently, the CSTE-approved set of indicators was posted on the CSTE website, and an updated set of these indicators (with additional references and more detailed background information) is included in this report (Appendix).

      2013 Revisions to Chronic Disease Indicators: The CDI set increased to 124 indicators in the following 18 topic groups: alcohol; arthritis; asthma; cancer; cardiovascular disease; chronic kidney disease; chronic obstructive pulmonary disease; diabetes; immunization; nutrition, physical activity, and weight status; oral health; tobacco; overarching conditions; and new topic areas that include disability, mental health, older adults, reproductive health, and school health. For the first time, the CDI set will include 22 indicators of systems and environmental change. Eleven existing indicators were recommended for deletion or combination (Table 2) because of changes in prevention practice guidelines, changes in relative impact of a condition, substitution of more useful indicators, or lack of available data.

      A total of 201 individual measures are included for the recommended 124 indicators (Table 3), many of which overlap multiple chronic disease topic areas or are specific to a certain sex or age group. CDC will make the CDI website more user-friendly by improving the appearance, navigation, and data-retrieval functionality. Because of the close partnership between the states and CDC during the CDI review, these changes directly reflect the priorities and needs of the states.

      Data Sources: The expansion of the CDI set necessitates inclusion of new sources of data. Previously, the CDIs relied on data from nine primary sources: the Behavioral Risk Factor Surveillance System (BRFSS), state cancer registries, the American Community Survey (ACS), birth and death certificates data in the National Vital Statistics System (NVSS), the State Tobacco Activities Tracking and Evaluation System, the United States Renal Data System, and the Youth Risk Behavior Surveillance System. The revised CDIs retain the use of data from these sources, and additional data will be obtained from the Pregnancy Risk Assessment Monitoring System, the Alcohol Epidemiologic Data System, the Alcohol Policy Information System, alcohol policy legal research, the National Survey of Children's Health, State Emergency Department Databases, State Inpatient Databases, the Centers for Medicare and Medicaid Services Chronic Condition Warehouse and the Medicare Current Beneficiary Survey, the U.S. Department of Agriculture, the CDC School Health Profiles, Achieving a State of Healthy Weight, Maternal Practices in Infant Nutrition and Care, the Breastfeeding Report Card, the Health Resources and Services Administration Uniform Data System, the National Immunization Survey, and the Water Fluoridation Reporting System. Many of these, such as BRFSS, use complex sampling designs and weights that must be taken into account. Additional details on these data sources are provided (Table 4).

      Data Concerns

      As with most sources of population health data, several data concerns must be considered. First, in instances in which it is likely that data might be compared across geographic areas and age is an important contributing risk factor, the data should be age standardized. On the CDI website, CDC reports both age-adjusted (using the 2000 U.S. standard population) and crude data values as appropriate. Second, data quality, sample size, and confidentiality considerations might limit the availability of data for certain geographic areas. CDC reports CDI data using the data quality and sample size thresholds stipulated and implemented by the data providers. Therefore, if the data providers suppress data for quality or confidentiality reasons, CDC does not report those particular data elements on the CDI website. CDC follows all data use policies of the data providers. Last, caution must be exercised when comparing estimates for the same indicator over time. Although the presentation of trend data might be valuable, CDC does not present more than the most recent year of available data on the CDI website. For example, one of the major sources of CDI data is BRFSS. Beginning in 2011, BRFSS implemented a major change in its methods, moving from a landline-only telephone survey to a survey that includes both landline and cellular telephones. In addition, BRFSS revised the weighting method. Because of these changes, data collected before 2011 are not directly comparable to data collected in 2011 and subsequent years. Therefore, CDC cannot present multiple years of BRFSS data on the CDI website. In future years, after additional years of survey data are obtained, the approach to trend data might be reassessed.

      Future Needs: CDC, CSTE, and NACDD will continue to collaborate to periodically review and revise the CDIs. Such reviews and revisions might focus on technical matters such as the implementation of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM), which is scheduled to occur on October 1, 2015. This change will necessitate updates to some of the indicator definitions. Continued and frequent reviews of the CDIs also are necessary as conceptual approaches to chronic disease surveillance evolve, especially regarding multiple chronic conditions (MCCs). MCCs create unique health-care challenges while presenting public health prevention opportunities . Despite recent estimates that approximately one fourth of U.S. adults are estimated to have MCCs, surveillance of MCCs requires an agreed-on conceptual framework and standardized definitions. Initial research has been reported on the prevalence of MCCs , and this updated set of CDIs includes an inaugural indicator on the presence of MCCs among older adults, using data from the Centers for Medicare and Medicaid Services. Future revisions of the CDIs will likely include additional MCC indicators as research in this field increases and data become available. In addition, future reviews might address data on health behaviors among younger children and additional data on systems and environmental indicators, should additional data become available.

      The CDIs are an example of collaboration among CDC and state health departments in building a consensus set of state-based health surveillance indicators. This update will help ensure that the CDI data remain the most relevant and current collection of chronic disease surveillance data for state epidemiologists, chronic disease program officials, and reproductive health and maternal and child health officials. The newly revised indicators are aligned with Healthy People 2020 objectives, the National Oral Health Surveillance System, and the Preconception Health Indicators. CDC will provide timely and up-to-date indicator data on a newly revised CDI website, which is under development. The indicator definitions will continue to serve as a standardized approach to conducting chronic disease surveillance for federal, state, and local public health.

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