The Need for Postdischarge, Patient-Centered Data in Trauma

Abstract

Trauma accounts for 199 800 deaths and 30.9 million nonfatal injuries in the United States each year. 1 Among survivors, the long-term consequences can be devastating in terms of both medical considerations, such as risk of readmission and need for rehabilitation, and patients' lived experience, affecting functional outcomes and health-related quality of life. Data from the Centers for Disease Control and Prevention suggest that in 2010, estimated annual lifetime costs due to trauma totaled more than $187 billion (an average of $1.05 million per person), of which 98.9% ($1.04 million per person) was due to loss of work alone. 1 Recent work by the National Institutes of Health and American College of Surgeons recognized this issue, calling for a need to consider longer-term outcomes of care and to implement patientcentered methods to collect postdischarge outcomes in existing trauma registries. 2 Consensus statements from Europe tell a similar story. 3 Nevertheless, despite widespread recognition, there remains a paucity of data concerning the postdischarge experience of trauma patients, particularly as it pertains to patient-centered outcomes. On a national scale, it is not known what information is being collected.As the largest trauma registry in the world collected in accordance with the US National Trauma Data Standard, the National Trauma Database provides a national repository of information on trauma care. In 2014, it collected data on more than 861 300 patient encounters and 724 trauma centers across the United States. The National Trauma Database has helped to inform stakeholders about the experience of injured patients in the acute care setting with an impact that, like other trauma registries throughout the world, traverses "epidemiology, prevention, monitoring and benchmarking, and quality improvement," among other uses. 4 It does not, however, collect information on events or outcomes following discharge from the emergency department or inpatient care-neither does the National Inpatient Sample.To assess the current status of postdischarge data collection in trauma registries, we conducted an internetbased systematic search of all 50 US states and the District of Columbia Department of Public Health (Emergency Medical Services) websites with the objective of identifying trauma registry data dictionaries and statewide trauma reports. In states where trauma registries are collected, existing information was queried for the inclusion of postdischarge outcomes, including what information is collected, for whom, and over what time span. Telephone requests for data dictionaries were made when they were not available online. Fortyseven of 51 states/regions had a statewide trauma registry (Table ).

Patient-reported outcomes in trauma: a scoping study of published research

“…While investigations in trauma typically focus on classic research methodologies including randomized controlled trials and database-driven clinical outcomes research to assess mortality, readmission rate, and complications, 8 trauma systems should now shift to more nuanced measures such as quality of life (QOL) and patient-reported outcomes (PROs). 9 10 …”

“…Except for a few notable examples, there has been limited focus on studying PROs in trauma care, especially as it relates to long-term QOL and survivorship. 9 To better understand the prevalence of studies involving PROs, we explored the last 30 years of trauma literature with a goal to (1) provide a broad overview of temporal trends in studying PROs in the trauma literature; (2) assess publication patterns of investigations studying PROs after operative intervention for injuries/emergencies; and (3) explore what PRO measures are being used in studies investigating patients hospitalized for injuries—excluding isolated brain/spine injuries and burns—to focus on a population largely represented by polytrauma patients. To achieve these aims, we conducted a scoping study of the available published literature.…”

One-year functional outcomes following major trauma: experience of a UK level 1 major trauma centre

“…Nonetheless, setting up an ongoing audit programme might lead to service improvement. One state in Australia, Victoria, has a population register and outcome audit programme; 8 the need to measure outcome nationally is recognized in the United States; 9 and the UK national stroke audit programme has achieved great success. 10 The Trauma Audit & Research Network (TARN) 11 was set up to support audit of trauma services, and a UK national audit of specialist rehabilitation has started.…”

Reduced chronic pain: Another benefit of recovery at an inpatient rehabilitation facility over a skilled nursing facility?

“…Although in the United States we are not currently routinely collecting long-term outcomes after injury 9 there have been a few concerted efforts over the last 20 years to collect such outcomes including the National Study on Cost and Outcomes of Trauma (NSCOT), 10 the Trauma Recovery Project 11 and more recently the FORTE project. 4 Such efforts, and other related studies, have brought to light the fact that it is not an easy road forward for the millions of injured patients who survive to hospital discharge.…”