The Rehabilitation Outcomes Center at Spaulding

Outcome Measures from ROCS Faculty

Coma Recovery Scale (CRS-R, CRSR-FAST, CRS-RT)

The Coma Recovery Scales are a suite of internationally recognized standardized neurobehavioral assessment measures designed for use in patients with disorders of consciousness. There are versions available.

Access the CRS-R, CRSR-FAST, and CRS-RT

The Coma Recovery Scale-Revised (CRS-R), Updated 2020

The full scale is intended to support and assist with the assessment of a be used to establish diagnosis, monitoring of behavioral recovery, prediction of an outcome, and assessment of treatment effectiveness.

The CRS-R consists of 23 items broken into 6 subscales, for a maximum score of 23 points. Subscales are composed of hierarchically arranged items: Auditory, Visual, Motor, Oromotor, Communication, and Arousal Functions.

The Coma Recovery Scale Revised - For Accelerated Standardized Testing (CRSR-FAST)

The CRSR-FAST is an abbreviated version that is validated for use in the intensive care unit. A brief training video is available for the CRSR-FAST.

The Coma Recovery Scale-Revised, Telephone Version (CRS-RT)

The CRS-RT is a caregiver-administered telephone interview designed for remote use.

READ MORE

Disorders of Consciousness Comprehensive Evidence-Based Assessment Battery (DOC COMPASS)

The DOC COMPASS is a single comprehensive resource for administration of a systematic evidence-based 8-week neurorehabilitation program for individuals with disorders of consciousness. It is intended to be used with individuals over the age of 18 who have experienced severe acquired brain injury (including those who require ventilator support) and have not yet regained the ability to follow instructions, communicate reliably or perform basic self-care activities. It includes assessment and treatment tools appropriate for both clinical and research purposes.

Core metrics include:

• Agitated Behavior Scale (ABS)
• Coma Recovery Scale- Revised (CRS-R)
• Confusion Assessment Protocol (CAP)
• Disability Rating Scale (DRS)
• Functional Communication Measures (FCM)
• Galveston Orientation and Amnesia Test (GOAT)
• Limb Movement Protocol (LMP)
• Medical Complications Checklist
• Nociception Coma Scale - Revised (NCS-R)
• Verbal Fluency

Evidence-Based Clinical Outcome Assessment Platform (EB-COP)

The EB-COP provides a systematic methodology for conducting more precise, evidence-based assessment of clinical outcome assessment measures (COAs) by evaluating performance within specific contexts of use (COUs) such as diagnosis, prognosis, or treatment response.

Among the more than 1,000 COAs currently used for traumatic brain injury (TBI), few have been systematically evaluated to determine their performance within specific COU. As described by the U.S. Food and Drug Administration, the COU specifies the population of interest and the purpose for which the COA will be employed. COAs are commonly used for screening, diagnostic categorization, outcome prediction and establishing treatment effectiveness. Despite the pivotal role that outcome assessment plays in research, COA selection typically relies on expert consensus. There is currently no methodology designed to determine the appropriateness of a particular COA within a specific COU. To address this gap, we developed and pilot tested the Evidence-Based Clinical Outcome Assessment Platform (EB-COP) to efficiently and transparently evaluate the suitability of TBI COAs for specific purposes of use (PoUs). Development of the EB-COP was informed by the FDA’s Roadmap to Patient-Focused Outcome Measurement in Clinical Trials, the American Academy of Neurology’s (AAN’s) well-established Clinical Practice Guideline Process Manual, the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and other literature describing standards for measurement development.

The framework of the EB-COP is built around the six distinct PoUs shown below:

1. Accurate diagnosis of TBI
2. Detection of TBI sequelae
3. Stratification of TBI subpopulations
4. Prediction of TBI outcome
5. Identification of natural history changes
6. Detection of treatment effects

LIBRE

The Life Impact Burn Recovery Evaluation (LIBRE) Profile is a self-reported outcome measure of social participation for adults with burn injury. It measures an individual's ability to engage in social situations across six areas: Relationships with Family & Friends, Social Interaction, Social Activities, Work & Employment, Romantic Relationships, and Sexual Relationships. While the LIBRE Profile is for adults with burn injury, studies are underway to develop a questionnaire to assess the impact of burn injury on child health in preschool and school-aged children.

The LIBRE Profile is available both as a regular survey (otherwise known as a “Short Form,”) or as a mobile application that modifies the questions based on initial responses (otherwise known as a “Computer Adaptive Test.”)

DOWNLOAD: Paper Short Forms | Mobile App (Apple) | Mobile App (Google)

If you are looking for resources for a burn survivor, please consider visiting the Phoenix Society for Burn Survivors.

LIBRE Profile Scoring & Science

Attempting to return to everyday life after a burn injury can be difficult, stressful and emotionally challenging. While traditional rehabilitation strategies for burn survivors focus on physical recovery, the Life Impact Burn Recovery Evaluation (LIBRE) Profile project focuses on the impact burn injuries have on a person’s social life.

The LIBRE Profile may be used by:

• Burn survivors and their loved ones for self-assessment and tracking.
• Clinicians for assessing patients and identifying individuals who may benefit from additional resources, or for clinical quality improvement.
• Community organizers for community needs assessments.
• Researchers for quantifying social participation in a wide range of studies. Examples include intervention effectiveness studies or longitudinal outcome studies that compare same-domain scores across different time points.

Administration Instructions

The LIBRE profile measures different aspects of an individual's ability to engage in everyday social situations across six social participation domains (areas) identified as important to people with burn injury (see below.) Each of the domains can be completed by themselves or in combination.

The LIBRE Profile can be completed one of three ways:

1. With paper and pencil
2. Via a mobile app
3. Researchers can build electronic systems to capture responses using tools such as REDCap

Item responses are then added up to obtain raw scores for each domain, which can then be converted to a standardized score using a score transformation table.

Scoring

How is the Standardized Score (T-Score) interpreted?

The Standardized Score (T-Score) places the participant’s score on a common metric based on a calibration study of 601 adult burn survivors.  The Standardized Score (T-Score) has a mean of 50 with a standard deviation of 10. Standardized Scores (T-Scores) can be interpreted as follows:

• LIBRE Profile-SF scale score of 50 – The burn survivor’s level of social participation is similar to the average level of social participation of the adult burn survivors included in the calibration sample.
• LIBRE Profile-SF scale score of 40 – The burn survivor’s level of social participation is 1 standard deviation below the level of social participation of the adults included in the calibration sample.
• LIBRE Profile-SF scale score of 60 – The burn survivor’s level of social participation is 1 standard deviation above the level of social participation of the adults included in the calibration sample.

FAQs

• What if the burn survivor lacks the cognitive ability or language skills needed to answer the LIBRE Profile items?
  • If the burn survivor cannot read or answer the items due to cognitive impairments, intellectual disabilities, impaired language abilities, or other reasons, the LIBRE Profile should not be administered.
• What if the burn survivor has visual or motor impairments and cannot complete the assessment independently?
  • A “recorder” (e.g., clinician, family member) can help to record responses. The recorder should not influence or answer items for the burn survivor.
• What if a burn survivor skips an item or several items?
  • Encourage the burn survivor to answer all questions in order to obtain the most accurate score; however, if the burn survivor is not able to, or does not want to answer a question, he or she may leave it blank.

Translations

The International Consortium for translations of the LIBRE Profile is working toward making the LIBRE Profile available in countries around the world. The Consortium meets regularly with representation from the U.S., Mexico, Taiwan, Japan, and Australia. The plans for this Consortium are to track burn recovery among these countries for future use as part of a global program for providing the LIBRE Profile in the communities of each country.

READ MORE about the LIBRE Profile.

The LIBRE Profile was developed in collaboration with Boston University School of Public Health, the Boston-Harvard Burn Injury Model System,  Mass General Brigham  and the Phoenix Society for Burn Survivors, with input from burn survivors and funding by the National Institute on Disability, Independent Living and Rehabilitation Research, Award Number 90DP0055. The LIBRE Profile uses the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) as a conceptual framework. The LIBRE Profile was developed specifically to measure social participation in persons with a burn injury.

Risk Calculator: 30-Day Inpatient Rehab Readmission

This readmission risk calculator looks at 30-day readmission risk to acute care hospitals from inpatient rehabilitation facilities (IRFs).

Use the Calculator

Hospital readmissions have become a major target of both quality improvement and cost savings at the forefront of ongoing health care reform initiatives. Readmission after hospital discharge represents not only a clinically relevant event for patients and caregivers, but also an expensive and potentially avoidable occurrence for hospitals and health systems.

Risk Calculator: Depression & PTSD after Burn Injury

Depression and posttraumatic stress are common after a burn injury. Our investigators developed an admission scoring system that assesses the risk of developing depression or posttraumatic stress symptoms at 6 to 24 months after burn injury. This tool uses demographic and clinical characteristics known at hospital admission to identify a subgroup of the burn population at higher risk of long-term psychiatric symptoms. It is the authors' intention that this tool may be used to inform screening, monitoring, timely diagnosis, and interventions.

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Risk Calculator: Heterotopic Ossification after Burn Injury

Heterotopic ossification, the development of abnormal bone in the soft tissue, is a rare but severely debilitating complication of burn injuries. The Boston-Harvard Burn Injury Model System developed a risk scoring system that can be used to predict an adult burn patient's risk of developing heterotopic ossification at the time of hospital admission.

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VR-36, VR-12, VR-6D

The VR-36© and VR-12© are generic instruments to measure health related quality of life. The VR-6D© is a utility metric derived from the VR-12© useful in cost-effectiveness analyses.

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Featured Programs

CrashCourse Concussion Education

CrashCourse is a suite of interactive products available online to provide communities with the latest medical knowledge on the prevention and treatment of concussions. According to the Brain Injury Association of America, someone in the U.S. sustains a traumatic brain injury every 11 seconds – and more than 75% of these injuries are concussions. Most concussions can heal within two weeks with proper care, but the overwhelming majority of people don’t know what care and treatment should look like. Researchers at Spaulding partnered with TeachAids to solve this problem. After six years of research and thousands of hours of production and user testing, we created the CrashCourse education programs.

CrashCourse Concussion Education

An interactive education program, featuring Heisman Trophy Runner-Up Bryce Love, with the latest medical knowledge about concussion symptoms, prevention, and treatment.

Standard Video Format | Virtual Reality Format

CrashCourse Brain Fly-Through

Fly through the brain with Kate Courtney, World Mountain Biking Champion, to better understand what’s happening inside your skull during a concussion.

Standard Video Format | Virtual Reality Format

Concussion StoryWall

Recovering from a concussion can feel isolating, but you will get better. Through the Concussion StoryWall, Spaulding faculty partnered with CrashCourse by TeachAids to collect nearly 4,000 stories of recovery from individuals with concussion and their families.

View the Concussion StoryWall

Disorders of Consciousness Practice Guideline Knowledge Translation Project

This five-year National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)-funded study, led by Joseph T. Giacino, PhD, from Spaulding Rehabilitation Hospital and Harvard Medical School, and supported by the Curing Coma Campaign, aims to evaluate the awareness, beliefs, and adoption of the 2018 evidence-based practice guidelines for the clinical management of individuals with acquired disorders of consciousness (DoC). These guidelines were sponsored by the American Academy of Neurology (AAN), the American Congress of Rehabilitation Medicine (ACRM), and NIDILRR.

Read the Guidelines

Aim 1

Characterize provider awareness, attitudes, perceptions of contextual determinants and use of the DoC practice guidelines for diagnosis and prognosis among providers who care for persons with DoC.

Aim 2

Develop and assess the acceptability, appropriateness and feasibility of DoC guideline KT interventions customized to setting-specific contextual determinants to promote their use.

Aim 3

Obtain preliminary data on the acceptability, use and sustainability of customized DoC guideline KT strategies and tools among providers in varied real-world clinical settings.

Learn More and Participate

To discover more about this research study and how you can actively contribute, please contact us:

Call: 617-952-5254 | Email: epier1@mgb.org and kgolden4@mghihp.edu

Partnerships

NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research

KTDRR: Knowledge Translation for Disability and Rehabilitation Research

MSKTC: Model Systems Knowledge Translation Center

NCC: Neurocritical Care Society

BIA-MA: Brain Injury Association of Massachusetts

MGH-IHP: MGH Institute of Health Professions

Mongan Institute

This project is supported by the National Institute on Disability, Independent Living and Rehabilitation Research, Grant #90DPKT0013.

Watch a 5-minute video describing the Disorders of Consciousness Knowledge Translation project

Innovative Treatments in Disorders of Consciousness (ITDC) Grant Program

The Rehabilitation Outcomes Center at Spaulding in collaboration with the Curing Coma Campaign administers the following funding opportunity to generate and initiate disruptive ideas in the treatment of patients with disorders of consciousness.

This award funds projects that acquire pilot data and/or create infrastructure to enable prospective multicenter RCTs that evaluate biologically plausible treatments. Subscribe to the Rehabilitation Outcomes Center Newsletter for email updates about the ITDC program and other outcomes research.

Background
Disorders of consciousness (DoC) — including coma, vegetative state, and minimally conscious state — are highly prevalent with estimates in the United States (2018)¹ of:

up to 42,000 people in a coma and vegetative state
up to 280,000 in a minimally conscious state.
The landscape of DoC management is fraught with challenges. Diagnosis is difficult, with no laboratory nor imaging tests to detect consciousness. Published estimates of misdiagnosis among people with DoC are around 40%. No treatments are available to prevent secondary effects of primary brain injury. There is only one proven post-acute treatment available with narrow indications — amantadine hydrochloride.

A 2020 Symposium from the Curing Coma Campaign² laid out research targets across six areas: defining endotypes/phenotypes, biomarkers, proof-of-concept clinical trials, prognostication, long-term recovery, and large data sets. Advances in our understanding of brain pathophysiology and biotechnology offer new avenues to improve diagnosis and treatment through research. The list below lists potential areas of exploration for applicants to consider. It is not an exhaustive list, and applicants are not limited to the below topics.

1. Infrastructure for clinical trials and observational studies
   • Establish infrastructure such as a multicenter DoC network or Model System, focused on a specific research question
2. Understanding of neurobiological mechanisms underlying consciousness/DoC
   • Connectomics / Circuit mapping
3. Injury classification
   • Phenotyping / Endotyping
4. Long-term outcome
   • Trajectory modeling
5. Neuroimaging and blood-based biomarkers
   • Validation of diagnostic, prognostic, response biomarkers
6. Prognostication
   • Modeling, large datasets, machine learning
7. Treatments for neuroprotection & post-acute recovery
   • Innovative proof-of-concept to comparative effectiveness studies (including re-purposed drugs and novel devices)

^{1Giacino et al. “Comprehensive systematic review update summary: disorders of consciousness” Neurology, 2018 Sept. 4; 91(10:461–470)
2 Claassen J, Akbari Y, Alexander S, et al. Proceedings of the First Curing Coma Campaign NIH Symposium: Challenging the Future of Research for Coma and Disorders of Consciousness. Neurocrit Care. 2021;35(Suppl 1):4-23. doi:10.1007/s12028-021-01260-x}

Prior Awards
The 2024 grant cycle funded two projects:
• A novel brain stimulation target for patients with disorders of consciousness” led by John Rolston, MD, PhD, Brigham and Women’s Hospital and Harvard Medical School
• “DECodIng endotype and PHEnotypes of Recovery from Coma (DECIPHER-COMA)” led by Chethan P. Venkatasubba Rao, MD, Baylor College of Medicine

Rolston, who is also director of epilepsy surgery at the Brigham, is leading a study that will evaluate the safety and efficacy of applying noninvasive or invasive forms of electrical stimulation to a so-called “sweet spot” deep within the brains’ thalamus, that has been previously identified as a potential treatment target due to it overlapping arousal fibers and being functionally connected to the cortical network. Studying this region more closely and testing different electrical stimulation interventions may one day lead to promising new treatment options.

Rao’s DECIPHER-COMA project seeks to identify unknown biomarkers of coma recovery, in an effort to create a roadmap for recovery that can fill current knowledge gaps within the field of neurocritical care. The researchers plan to utilize cutting edge techniques, including machine learning and AI, to review enrolled patients’ electronic health records and find new markers and patterns that can deepen their understanding of coma recovery. The hope is that in the future, this roadmap can serve as an adaptable platform that powers clinical trials of coma treatments.
View the full 2024 grant application instructions.

Grant Contact
Shonali Gaudino
sgaudino@mgb.org
(617) 952-6509

Learning Health systems training to improve Disability and chronic condition care (LeaHD)

Under ROCS’ leadership, Spaulding Rehabilitation is a Health System Partner in the Learning Health systems training to improve Disability and chronic condition care (LeaHD) Center.

LeaHD’s mission is to train scientists in learning health systems research to improve the health-related quality of life of persons with disability and chronic conditions by addressing inequities in access to and quality of rehabilitation and long term services and supports. The LeaHD program recruits and embeds Learning Health System scientists to conduct research at Spaulding Rehabilitation. The center provides the scientists with mentored training in core LHS research competencies, uses individualized training plans, and provides experiential learning opportunities within health systems in patient-centered outcomes research (PCOR), clinical effectiveness research (CER), and dissemination & implementation (D&I) research.

Model Systems at Spaulding

We are proud to be the only institution in the country to be home to all three Model System programs for persons with burn injury, spinal cord injury, and traumatic brain injury. By definition, a model systems program combines 3 basic elements: medical care, state-of-the-art research, and education and dissemination of model systems activities (both medical and research).

The research arms of these programs pool information with Model Systems programs across the country to conduct innovative and high-quality research intended to improve long term functional, vocational, cognitive, and quality-of-life outcomes. Each Model System location invites newly injured individuals to participate in an ongoing National Database. Data are collected at regular intervals throughout the person’s lifespan. This information is used to further the understanding of the long-term consequences of these injuries and to develop improved treatments and systems of care.

Learn more about these programs below

• Boston-Harvard Burn Injury Model System
• Spaulding-Harvard Traumatic Brain Injury Model System
• Spaulding New England Regional Spinal Cord Injury Center

Media

The Rehabilitation Outcomes Center at Spaulding hosts events and produces media about rehabilitation sciences. These platforms are intended to reach broad audiences, engage different perspectives, and uplift the voices of people with lived rehabilitation experiences.

Finding Strength: The Spaulding Rehabilitation Podcast

Finding Strength: The Spaulding Rehabilitation Podcast is a platform to bring together voices in the rehabilitation community. Monthly episodes lead with the voices of people with lived experiences and combine personal stories with expert perspectives to provide a comprehensive and compelling picture of rehabilitation research.

By sharing stories of individuals who have faced significant challenges and successfully navigated the rehabilitation process, "Finding Strength" aims to inspire hope, raise awareness, and educate listeners about the possibilities of rehabilitation and recovery.

We strive to make our content accessible to all people. For those with hearing impairments, transcripts are available through Spotify.

If you are interested in one of the articles highlighted on the show, but are having trouble accessing it, please reach out to us.

Subscribe now on Spotify | Apple Podcasts | iHeart

Episodes

• S2 Ep. 6: Aging, Osteoarthritis, and Pain: How Menopause Shapes Women’s Musculoskeletal Health
• S2 Ep. 5: Synapse National: Recruiting Physiatry’s Next Generation
• S2 Ep. 4: Systems Science and the Complex Healthcare Journey of People with Aphasia
• S2 Ep. 3: Conversations on Severe Traumatic Brain Injury and Life-Sustaining Treatment
• S2 Ep. 2: Building Bridges for Brain Injury: The Legacy of Marilyn Spivack and Dr. Mel Glenn
• S2 Ep. 1: Which Head Impacts Lead to CTE?
• S1 Ep. 8: Concussion in School Sports
• S1 Ep. 7: Equity in Elite Sports: The Paralympian
• S1 Ep. 6: More Than Just a Game: The Public Health Impact of Sport and Physical Activity for People with Disabilities
• S1 Ep. 5: No Easy Game: An Intensive Comprehensive Aphasia Program’s First Five Years
• S1 Ep. 4: Measuring Function After Spinal Cord Injury: The SCI-FI
• S1 Ep. 3: Recovery After Brain Injury
• S1 Ep. 2: From Survival to Survivorship, Part II
• S1 Ep. 1: From Survival to Survivorship, Part I – Framing Traumatic Injury as a Chronic Condition

Newsletter

Sign up for quarterly email newsletters to stay in touch with the Rehabilitation Outcomes Center at Spaulding. Newsletters highlight Spaulding events, research, community updates, education, and rehabilitation resources.

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