TY - JOUR
T1 - Long-term patient-reported outcomes and patient-reported outcome measures after injury
T2 - The National Trauma Research Action Plan (NTRAP) scoping review
AU - Herrera-Escobar, Juan P.
AU - Osman, Samia Y.
AU - Das, Sophiya
AU - Toppo, Alexander
AU - Orlas, Claudia P.
AU - Castillo-Angeles, Manuel
AU - Rosario, Angel
AU - Janjua, Mahin B.
AU - Arain, Muhammad Abdullah
AU - Reidy, Emma
AU - Jarman, Molly P.
AU - Nehra, Deepika
AU - Price, Michelle A.
AU - Bulger, Eileen M.
AU - Haider, Adil H.
N1 - Funding Information:
Although traumatic injuries have a significant negative impact on patients’ long-term health and quality of life, there are currently no efforts to systematically collect long-term outcomes data in the United States, making it difficult to monitor recovery and identify opportunities for intervention to improve outcomes. Furthermore, there is no consensus on which data elements should be collected to be able to benchmark outcomes between institutions and injury types. This lack of data prompted the National Academies of Sciences, Engineering, and Medicine (NASEM) to call for a National Trauma Research Action Plan (NTRAP) in its 2016 report.14 Two years later, the US Army Medical Research and Materiel Command funded a project to develop a NTRAP (under contract no. W81XWH-18-C-0179). One of the NTRAP aims is to define optimal metrics to assess long-term functional outcomes in injured patients following hospital discharge. This requires establishing a consensus that determines which patient-reported outcomes (PROs) are important to the trauma patient and should be prioritized, and which patient-reported outcome measures (PROMs) should be used to measure them.
Funding Information:
The authors declare no conflict of interest. Funding Statement: This work is supported by the US Army Medical Research and Materiel Command under Contract No. W81XWH-18-C-0179. The views, opinions and/or findings contained in this report are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision unless so designated by other documentation. In the conduct of research where humans are the subjects, the investigator(s) adhered to the policies regarding the protection of human subjects as prescribed by Code of Federal Regulations (CFR) Title 45, Volume 1, Part 46; Title 32, Chapter 1, Part 219; and Title 21, Chapter 1, Part 50 (Protection of Human Subjects). This article has been reviewed by the NTRAP Publications Committee for scientific content and consistency of data interpretation with previous NTRAP publications.
Publisher Copyright:
© 2021 Wolters Kluwer Health, Inc. All rights reserved.
PY - 2021
Y1 - 2021
N2 - Background: The aim of this scoping review is to identify and summarize patient-reported outcome measures (PROMs) that are being used to track long-term patient-reported outcomes (PROs) after injury and can potentially be included in trauma registries. Methods: Online databases were used to identify studies published between 2013 and 2019, from which we selected 747 articles that involved survivors of acute physical traumatic injury aged 18 years or older at time of injury and used PROMs to evaluate recovery between 6 months and 10 years postinjury. Data were extracted and summarized using descriptive statistics and a narrative synthesis of the results. Results: Most studies were observational, with relatively small sample sizes, and predominantly on traumatic brain injury or orthopedic patients. The number of PROs assessed per study varied from one to 12, for a total of 2052 PROs extracted, yielding 74 unique constructs (physical health, 25 [34%]; mental health, 27 [37%]; social health, 12 [16%]; cognitive health, 7 [10%]; and quality of life, 3 [4%]). These 74 constructs were assessed using 355 different PROMs. Mental health was the most frequently examined outcome domain followed by physical health. Health-related quality of life, which appeared in more than half of the studies (n = 401), was the most common PRO evaluated, followed by depressive symptoms. Physical health was the domain with the highest number of PROMs used (n = 157), and lower-extremity functionality was the PRO that contributed most PROMs (n = 33). Conclusion: We identified a wide variety of PROMs available to track long-term PROs after injury in five different health domains: physical, mental, social, cognitive, and quality of life. However, efforts to fully understand the health outcomes of trauma patients remain inconsistent and insufficient. Defining PROs that should be prioritized and standardizing the PROMs to measure them will facilitate the incorporation of long-term outcomes in national registries to improve research and quality of care.
AB - Background: The aim of this scoping review is to identify and summarize patient-reported outcome measures (PROMs) that are being used to track long-term patient-reported outcomes (PROs) after injury and can potentially be included in trauma registries. Methods: Online databases were used to identify studies published between 2013 and 2019, from which we selected 747 articles that involved survivors of acute physical traumatic injury aged 18 years or older at time of injury and used PROMs to evaluate recovery between 6 months and 10 years postinjury. Data were extracted and summarized using descriptive statistics and a narrative synthesis of the results. Results: Most studies were observational, with relatively small sample sizes, and predominantly on traumatic brain injury or orthopedic patients. The number of PROs assessed per study varied from one to 12, for a total of 2052 PROs extracted, yielding 74 unique constructs (physical health, 25 [34%]; mental health, 27 [37%]; social health, 12 [16%]; cognitive health, 7 [10%]; and quality of life, 3 [4%]). These 74 constructs were assessed using 355 different PROMs. Mental health was the most frequently examined outcome domain followed by physical health. Health-related quality of life, which appeared in more than half of the studies (n = 401), was the most common PRO evaluated, followed by depressive symptoms. Physical health was the domain with the highest number of PROMs used (n = 157), and lower-extremity functionality was the PRO that contributed most PROMs (n = 33). Conclusion: We identified a wide variety of PROMs available to track long-term PROs after injury in five different health domains: physical, mental, social, cognitive, and quality of life. However, efforts to fully understand the health outcomes of trauma patients remain inconsistent and insufficient. Defining PROs that should be prioritized and standardizing the PROMs to measure them will facilitate the incorporation of long-term outcomes in national registries to improve research and quality of care.
KW - Injury
KW - Long-term outcomes
KW - Outcome measures
KW - Patient-reported outcomes
UR - http://www.scopus.com/inward/record.url?scp=85105703477&partnerID=8YFLogxK
U2 - 10.1097/TA.0000000000003108
DO - 10.1097/TA.0000000000003108
M3 - Review article
C2 - 33605698
AN - SCOPUS:85105703477
SN - 2163-0755
VL - 90
SP - 891
EP - 900
JO - Journal of Trauma and Acute Care Surgery
JF - Journal of Trauma and Acute Care Surgery
IS - 5
ER -
