In addition to life expectancy, available evidence suggests that self-reported health status has not improved among retirees (Hung et al., 2011) or has declined in the general population (Jia and Lubetkin, 2009; Zack et al., 2004) and persons with certain chronic illnesses (Pan et al., 2006). However, these findings are not consistent (Salomon et al., 2009), as some data suggest that the prevalence of disability is decreasing (Manton, 2008), and in some surveys health status is improving (Salomon et al., 2009), over time. These disparate findings likely result from lack of standardized methods of measurement of the complex components and determinants of health status and disability (NRC, 2009), and they suggest that the current surveillance systems are insufficient for tracking progress in efforts to monitor trends in quality of life in the United States overall or within communities.

Despite uncertainty about trends in quality of life in the United States, the evidence is clear that more people are living with chronic illnesses as a result of increasing prevalence of some illnesses (e.g., obesity) and longer survival among patients diagnosed with chronic illness. Moreover, the rising costs of health care, along with evidence from research focused on patterns of health care utilization and costs, have focused attention on the societal burden of chronic diseases, particularly multiple chronic conditions (MCCs) (Tinetti and Studenski, 2011). Together, the aging of the population, the decline in relative life expectancy and possibly the quality of life, and unsustainable increases in health care costs combine to create a rapidly growing burden of chronic illness that demands more comprehensive surveillance beyond mortality and risk factors to address these problems.

The goal of living well with chronic illness and efforts to control the growing societal burden of chronic illness start with enhanced surveillance to provide data necessary to plan, implement, and evaluate effectiveness of interventions at the individual and population levels. This chapter has several objectives:

1. To describe a conceptual framework for chronic disease surveillance.

2. To describe how public health surveillance may be used to inform public policy decisions to improve the quality of life of patients living with chronic illnesses.

3. To examine current data sources and methods for surveillance of certain chronic diseases and identify gaps.

4. To describe potential for surveillance system integration.

5. To describe future data sources, methods, and research directions for surveillance to enhance living well with chronic illness.

The National Academies of Sciences, Engineering, and Medicine
500 Fifth St. N.W. | Washington, D.C. 20001

Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement