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      Challenges in Conducting Long-term Outcomes Studies in Critical Care

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          Abstract

          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 due to 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 subject 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.

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          Author and article information

          Journal
          9504454
          20622
          Curr Opin Crit Care
          Curr Opin Crit Care
          Current opinion in critical care
          1070-5295
          1531-7072
          20 March 2020
          October 2019
          01 October 2020
          : 25
          : 5
          : 473-488
          Affiliations
          [1 ]Department of Medicine (Critical Care Medicine), Division of Respirology, University Health Network, Toronto, Canada
          [2 ]Interdepartment Division of Critical Care Medicine, University of Toronto, Toronto, Canada
          [3 ]Division 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, Nashville, Tennessee
          [4 ]Geriatric Research, Education and Clinical Center (GRECC) Service, Department of Veterans Affairs Medical Center, Tennessee Valley Healthcare System, Nashville, Tennessee
          Author notes
          Corresponding author: M. Elizabeth Wilcox, Department of Medicine; Division of Respirology, Toronto Western Hospital, McLaughlin Wing 2-411K, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada, elizabeth.wilcox@ 123456mail.utoronto.ca
          Article
          PMC7141412 PMC7141412 7141412 nihpa1549385
          10.1097/MCC.0000000000000650
          7141412
          31356238
          0f7eefa2-653b-4cd8-88c5-fa4bed38c609
          History
          Categories
          Article

          Mortality,Data Missingness,ICU survivors,Family,Loss to Follow-Up,Attrition

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