# Development and Initial Validation of a Caregiver-Report Measure

> **NIH NIH R03** · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · 2022 · $79,500

## Abstract

ABSTRACT
Unexplained heterogeneity in outcomes following traumatic brain injury (TBI) precludes accurate
prognostication and is cited as a critical barrier that partially accounts for decades of failed trials of
neuroprotective therapies. To address this critical barrier, several international research consortia were
established to better understand factors influencing recovery from pediatric and adult TBI. These efforts are
strengthened by the adoption of common data elements (CDEs), the “gold standard” of psychometrically
validated measures of outcomes and their predictors. One factor that may account for unexplained
heterogeneity in outcomes is rehabilitation utilization; however, it is not well studied because no scientifically
rigorous, comprehensive, standardized, or validated measure of rehabilitation utilization currently exists. TBI
rehabilitation encompasses a wide range of multidisciplinary services spanning the care continuum from the
ICU to the community. Utilization of rehabilitation services following pediatric TBI is highly variable. Our long-
term goal is to examine whether variance in rehabilitation utilization accounts for some of the unexplained
heterogeneity in outcomes following pediatric TBI. If we can reduce heterogeneity in our models of TBI
recovery, we can provide more accurate prognostication and improve our ability to test the efficacy of
treatments. As a critical first step, we will develop, refine, and conduct initial validation of a caregiver-report
measure of rehabilitation utilization, the Rehabilitation Utilization Measure (RUM). We will combine qualitative
and quantitative methods to engage caregiver, clinician, and scientist stakeholders in measure development
and refinement and to conduct initial measure validation. This proposal addresses NCMRR research priorities:
(1) understanding real-world health service access; (2) developing objective measures that may predict
rehabilitation treatment response; and (3) identifying, preventing, and treating key secondary conditions,
including cognitive impairment. Successful completion will result in an innovative, rigorous, initially validated
and refined caregiver-report measure of rehabilitation utilization that can be further validated and adapted for
research and clinical use in children or adults from wide-ranging rehabilitation populations and considered for
inclusion as a CDE in future TBI studies. The PIs will use this R03 data in direct support of an R01 with aims
to: (1) develop an mHealth version of the RUM; (2) examine accuracy and added value of caregiver reporting
of rehabilitation utilization relative to insurance claims data; and (3) examine associations of rehabilitation
utilization as reported on the RUM with its environmental (e.g. rehabilitation availability) and patient
characteristic (e.g. TBI severity, functional status, psychosocial adversity,
healthcare access
) determinants,
and with neurobehavioral outcomes. The potential impact of this resea...

## Key facts

- **NIH application ID:** 10448239
- **Project number:** 5R03HD101746-02
- **Recipient organization:** UNIVERSITY OF PITTSBURGH AT PITTSBURGH
- **Principal Investigator:** Lauren Terhorst
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $79,500
- **Award type:** 5
- **Project period:** 2021-07-10 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10448239

## Citation

> US National Institutes of Health, RePORTER application 10448239, Development and Initial Validation of a Caregiver-Report Measure (5R03HD101746-02). Retrieved via AI Analytics 2026-05-21 from https://api.ai-analytics.org/grant/nih/10448239. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*