Chronic disorders constitute a widespread and growing burden within the population and the health care system. They affect over 45% of persons in the US who are not institutionalized and are associated with premature death, early retirement or days lost to work, impaired functional ability and reduced quality of life. Typically lifelong treatment is directed to slowing of disease progression, prevention of complications, maintenance of function and preservation of quality of life. Yet research suggests that on average 50% of persons who accept a treatment recommendation do follow it sufficiently to achieve optimal benefit and that as many as 45% of providers do not prescribe optimal regimen. This is reflected in the poor rates of control in many of the chronic diseases. The adverse outcomes increase the economic burden of chronic disorders. Indeed the costs of poor adherence to medication regimen alone has been estimated to be over $100 billion per year. Poor adherence can be viewed as a case of errors in regimen management. Yet very little attention has been paid to the study of strategies to improve performance and those which have been carried out have shown relatively small effect sizes. Unfortunately studies have been handicapped by the use of inaccurate measurement. Thus, the ability to identify factors associated with management problems, patterns of errors, identification of their determinants, and adequate evaluation of interventions have suffered. Considerable investigation remains necessary before we can fully understand and modify these costly and potentially harmful practices. As we have been examining factors associated with outcomes in chronic disorders we have also identified the central role that management of the treatment regimen plays in clinical outcomes. In this application, therefore, we plan to focus our efforts on the determinants and interventions for this clinically and economically significant problem with underlying emphasis on adequate measurement methodology. Specifically we aim to provide the infrastructure support to sustain and extend the depth of interdisciplinary investigation on management of treatment regimen in chronic disorders, support the conduct of methodological studies, stimulate and support collaborations which contribute to enhanced synergy in pursing this knowledge, develop new investigators in the field, including schools of nursing who are developing their research portfolios, and disseminating findings to both the scientific and clinical communities. We propose to design and test a model of distant research development and of dissemination into clinical settings. We would begin this effort with 36 core investigators representing 59 studies. We propose to provide the necessary infrastructure through three cores: cognitive, data management and analysis and research development. The problem is widespread, of clinical and economic significance, and the experience and opportunity to impact this problem are available.
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