RESUMO
Background: One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) recognized the same clinical entity. Methods: We enrolled participants from seven specialty clinics in the United States. We used baseline data (n = 465) on standardized questions measuring general clinical characteristics, functional impairment, post-exertional malaise, fatigue, sleep, neurocognitive/autonomic symptoms, pain, and other symptoms to evaluate whether patient characteristics differed by clinic. Results: We found few statistically significant and no clinically significant differences between clinics in their patients' standardized measures of ME/CFS symptoms and function. Strikingly, patients in each clinic sample and overall showed a wide distribution in all scores and measures. Conclusions: Illness heterogeneity may be an inherent feature of ME/CFS. Presenting research data in scatter plots or histograms will help clarify the challenge. Relying on case-control study designs without subgrouping or stratification of ME/CFS illness characteristics may limit the reproducibility of research findings and could obscure underlying mechanisms.
RESUMO
INTRODUCTION: Official counts of deaths attributed to disasters are often under-reported, thus adversely affecting public health messaging designed to prevent further mortality. During the Oklahoma (USA) May 2013 tornadoes, Oklahoma State Health Department Division of Vital Records (VR; Oklahoma City, Oklahoma USA) piloted a flagging procedure to track tornado-attributed deaths within its Electronic Death Registration System (EDRS). To determine if the EDRS was capturing all tornado-attributed deaths, the Centers for Disease Control and Prevention (CDC; Atlanta, Georgia USA) evaluated three event fatality markers (EFM), which are used to collate information about deaths for immediate response and retrospective research efforts. METHODS: Oklahoma identified 48 tornado-attributed deaths through a retrospective review of hospital morbidity and mortality records. The Centers for Disease Control and Prevention (CDC; Atlanta, Georgia USA) analyzed the sensitivity, timeliness, and validity for three EFMs, which included: (1) a tornado-specific flag on the death record; (2) a tornado-related term in the death certificate; and (3) X37, the International Classification of Diseases, 10th Revision (ICD-10) code in the death record for Victim of a Cataclysmic Storm, which includes tornadoes. RESULTS: The flag was the most sensitive EFM (89.6%; 43/48), followed by the tornado term (75.0%; 36/48), and the X37 code (56.2%; 27/48). The most-timely EFM was the flag, which took 2.0 median days to report (range 0-10 days), followed by the tornado term (median 3.5 days; range 1-21), and the X37 code (median >10 days; range 2-122). Over one-half (52.1%; 25/48) of the tornado-attributed deaths were missing at least one EFM. Twenty-six percent (11/43) of flagged records had no tornado term, and 44.1% (19/43) had no X37 code. Eleven percent (4/36) of records with a tornado term did not have a flag. CONCLUSION: The tornado-specific flag was the most sensitive and timely EFM. Using the flag to collate death records and identify additional deaths without the tornado term and X37 code may improve immediate response and retrospective investigations. Moreover, each of the EFMs can serve as quality controls for the others to maximize capture of all disaster-attributed deaths from vital statistics records in the EDRS.Issa AN, Baker K, Pate D, Law R, Bayleyegn T, Noe RS. Evaluation of Oklahoma's Electronic Death Registration System and event fatality markers for disaster-related mortality surveillance - Oklahoma USA, May 2013. Prehosp Disaster Med. 2019;34(2):125-131.