1c:I[419806,["/_next/static/chunks/bb923814e1f4d2e9.js","/_next/static/chunks/dd3ee9f5b7716ca6.js","/_next/static/chunks/4204a0ae82542ca8.js","/_next/static/chunks/1270dead247da766.js","/_next/static/chunks/6e1aa89a642f40be.js","/_next/static/chunks/2d7aa753e81324a8.js","/_next/static/chunks/8ffd0b71567920d8.js","/_next/static/chunks/67ea6dfd21f16c5f.js","/_next/static/chunks/24eb4379f68013fd.js","/_next/static/chunks/b8cd775ffdf935bd.js","/_next/static/chunks/983103cd9eb7b428.js","/_next/static/chunks/263f2cdcb9aa2341.js","/_next/static/chunks/294b9525248c8e5f.js"],"default"] 1d:T40e,HEALTH-related quality of life (HRQL) is increasingly used as an outcome in clinical trials, effectiveness research, and research on quality of care. Factors that have facilitated this increased usage include the accumulating evidence that measures of HRQL are valid and "reliable,"¹the publication of several large clinical trials showing that these outcome measures are responsive to important clinical changes,^2-5and the successful development and testing of shorter instruments that are easier to understand and administer.^6-13Because these measures describe or characterize what the patient has experienced as the result of medical care, they are useful and important supplements to traditional physiological or biological measures of health status. Given this improved ability to assess patients' health status, how can physicians and health care systems intervene to improve HRQL? Implicit in the use of measures of HRQL in clinical trials and in effectiveness research is the concept that clinical1e:T40e,HEALTH-related quality of life (HRQL) is increasingly used as an outcome in clinical trials, effectiveness research, and research on quality of care. Factors that have facilitated this increased usage include the accumulating evidence that measures of HRQL are valid and "reliable,"¹the publication of several large clinical trials showing that these outcome measures are responsive to important clinical changes,^2-5and the successful development and testing of shorter instruments that are easier to understand and administer.^6-13Because these measures describe or characterize what the patient has experienced as the result of medical care, they are useful and important supplements to traditional physiological or biological measures of health status. Given this improved ability to assess patients' health status, how can physicians and health care systems intervene to improve HRQL? Implicit in the use of measures of HRQL in clinical trials and in effectiveness research is the concept that clinical1f:T4fb,The objective of this study was to create a 5-year survivorship model to identify key clinical features of cystic fibrosis. Such a model could help researchers and clinicians to evaluate therapies, improve the design of prospective studies, monitor practice patterns, counsel individual patients, and determine the best candidates for lung transplantation. The authors used information from the Cystic Fibrosis Foundation Patient Registry (CFFPR), which has collected longitudinal data on approximately 90% of cystic fibrosis patients diagnosed in the United States since 1986. They developed multivariate logistic regression models by using data on 5,820 patients randomly selected from 11,630 in the CFFPR in 1993. Models were tested for goodness of fit and were validated for the remaining 5,810 patients for 1993. The validated 5-year survivorship model included age, forced expiratory volume in 1 second as a percentage of predicted normal, gender, weight-for-age z score, pancreatic sufficiency, diabetes mellitus, Staphylococcus aureus infection, Burkerholderia cepacia infection, and annual number of acute pulmonary exacerbations. The model provides insights into the complex nature of cystic fibrosis and supplies a rigorous tool for clinical practice and research.

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