Why my disease is important: metrics of disease occurrence used in the introductory sections of papers in three leading
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RESEARCH
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Why my disease is important: metrics of disease occurrence used in the introductory sections of papers in three leading general medical journals in 1993 and 2003 Hebe N Gouda* and John W Powles
Abstract Background: We assessed the metrics used in claims about disease importance made in the introductory sections of scientific papers published in 1993 and 2003. We were interested in the choice of metric in circumstances where establishing the relative social importance of a disease was, presumptively, a primary objective. Methods: This study consisted of a textual examination of the introductory statements from papers retrieved from MEDLINE. Papers were published in the New England Journal of Medicine, The Lancet, and the Journal of the American Medical Association during the first halves of 1993 and 2003, and were selected on the basis of keywords found in a pilot study to be associated with claims about disease importance. Results: We found 143 papers in 1993 and 264 papers in 2003 included claims about disease importance in their introductory sections, and characteristics of these claims were abstracted. Of the quotes identified in the papers and articles examined, most used counts, prevalence, or incidence measurements. Some also used risk estimates and economic quantities to convey the importance of the disease. There was no change in the types of metrics used between 1993 and 2003. Very few articles, even in 2003, used metrics that weighted disease onsets by the expected consequent loss of healthy time – such as years of life lost, quality-adjusted life years, and/or disabilityadjusted life years. Conclusions: Claims about the relative importance of diseases continued to be overwhelmingly expressed in terms of counts (of deaths and disease onsets) and comparisons of counts, rates, and risks. Where the aim is to convey the burden that a given disease imposes on a society, “event-based” metrics might be less fit for the purpose than “time-based” metrics. More attention is needed to how the choice of metric should relate to the purpose at hand.
Background Ranking diseases by their social importance is a central analytic task in health policymaking. Of the many ways in which the occurrence of disease may be measured and expressed, some are more suitable for this purpose than others. Although measures based on disease onsets ("event-based measures”) may be optimal for scientific purposes, measures of the consequences of disease onsets generally serve better as measures of the burden that the disease imposes on society. Measures of disease
burden are therefore typically expressed in life or healthy time lost. An example, using only mortality data, is the metric of “years of life lost” [1,2]. The 1990s saw a new wave of interest in measures designed to capture the social losses consequent to disease onset. In particular, the ambitious Global Burden of Disease (GBD) initiative devised the disabilityadjusted life year (DALY), which first came to general notice in the 1993 World Development Repo
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