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Challenges in conducting long-term outcomes studies in critical care

Wilcox, M. Elizabetha,b; Ely, E. Wesleyc,d

Current Opinion in Critical Care: October 2019 - Volume 25 - Issue 5 - p 473–488
doi: 10.1097/MCC.0000000000000650
CRITICAL CARE OUTCOMES: Edited by M. Elizabeth Wilcox

Purpose of review Evaluating longer term mortality, morbidity, and quality of life in survivors of critical illness is a research priority. This review details the challenges of long-term follow-up studies of critically ill patients and highlights recently proposed methodological solutions.

Recent findings Barriers to long-term follow-up studies of critical care survivors include high rates of study attrition because of death or loss to follow-up, data missingness from experienced morbidity, and lack of standardized outcome as well as reporting of key covariates. A number of recent methods have been proposed to reduce study patients attrition, including minimum data set selection and visits to transitional care or home settings, yet these have significant downsides as well. Conducting long-term follow-up even in the absence of such models carries a high expense, as personnel are very costly, and patients/families require reimbursement for their time and inconvenience.

Summary There is a reason why many research groups do not conduct long-term outcomes in critical care: it is very difficult. Challenges of long-term follow-up require careful consideration by study investigators to ensure our collective success in data integration and a better understanding of underlying mechanisms of mortality and morbidity seen in critical care survivorship.

aDivision of Respirology, Department of Medicine (Critical Care Medicine), University Health Network

bInterdepartment Division of Critical Care Medicine, University of Toronto, Toronto, Canada

cDivision of Allergy, Pulmonary, and Critical Care Medicine and Center for Health Services Research, Department of Medicine, and the Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, Vanderbilt University Medical Center

dGeriatric Research, Education and Clinical Center (GRECC) Service, Department of Veterans Affairs Medical Center, Tennessee Valley Healthcare System, Nashville, Tennessee, USA

Correspondence to M. Elizabeth Wilcox, MD, MPH, Division of Respirology, Department of Medicine, Toronto Western Hospital, McLaughlin Wing 2–411M, 399 Bathurst Street, Toronto, ON, Canada M5T 2S8. E-mail:

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