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NTRAP Aim 2: Determining the Core [Patient-Reported] Outcome Set (COS)

In 2019, the American College of Surgeons Committee on Trauma and the Childress Institute for Pediatric Trauma held consensus conference on patient-reported outcome measures (PROMs). This conference discussed, in part, identifying instruments to collect long-term outcomes after injury. These discussions helped inform the design of a scoping review of literature on available PROMs to assess long-term outcomes after acute physical injury.

We then presented the results of this scoping review to a panel of experts (clinicians, researchers, patients) and conducted a two-pronged modified Delphi consensus survey. Our first two rounds were used to identify a set of core domains to evaluate long-term outcomes. After these domains had been determined, we conducted three more rounds to determine PROMs for said domains, arriving at a final set of Core Outcome Measures.


Figure 1. Overall Process to Develop a Core Outcome Set and a Core Outcome Measurement Set for Research in Traumatic Injury Survivors

Stage 1

Out of 74 core outcomes identified in the NTRAP Aim 2 scoping review and reviewed by our Delphi panel, 29 met the consensus criteria and were determined to be important. Thus, our Core Outcome Set (COS) to be considered in Stage 2 was:

  1. Activities of daily living
  2. Alcohol use
  3. Anxiety
  4. Behavior changes
  5. Cognitive functioning (general)
  6. Concentration/attention
  7. Depressive symptoms
  8. Disease-specific quality of life
  9. Economic impact
  10. Employment stability*
  11. Executive functioning
  12. General physical health
  13. Health-related quality of life
  14. Healthcare utilization*
  15. Instrumental activities of daily living
  16. Mental health (general)
  17. Pain (general)
  18. Physical mobility
  19. Post-concussion symptoms
  20. Post-traumatic stress symptom spectrum
  21. Prescribed narcotic use*
  22. Relationship quality
  23. Return to work*
  24. Satisfaction with life
  25. Sleep (general)
  26. Social functioning (general)
  27. Substance use
  28. Suicidal ideation
  29. Work status*

*Indicates that a domain did not have a measurement instrument indicated in the literature and therefore was not assessed in stage 2.

Stage 2

For the 24 core patient-reported outcomes that reached consensus as important in Stage 1, our scoping review identified 199 measures being administered for them (patient-reported outcome measures, or PROMs). Following Stage 2, 14 unique measures reached our consensus criteria within 13 of those core outcomes. Thus, the Core Outcome Measurement Set (COMS) is:

1 – Alcohol Use Disorders Identification Test (AUDIT-C) to measure alcohol use

2 – CAGE Questionnaire to measure substance abuse disorders

3 – General Anxiety Disorder-7 to measure anxiety

4 – Glasgow Outcome Scale – Extended (GOS-E) to measure cognitive functioning

5 – Patient Health Questionnaire-8 (PHQ-8) to measure depressive symptoms

6 – Patient Health Questionnaire-9 (PHQ-9) to measure depressive symptoms

7-11 – Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Interference to measure pain (general), anxiety, mental health, depressive symptoms, and physical mobility

12 – Post-traumatic Stress Disorder Checklist (PCL-5) to measure PTSD

13 – Revised Trauma Quality of Life (RT-QoL) to measure activities of daily living

14 – Short Form Survey-12 (SF-12) to measure physical health (general)

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