Disorders of Consciousness: Practice Guideline Update Recommendations
Dr. Giacino led an effort to conduct a systematic review of the world literature on management of persons with DoC and the establishment of updated clinical guidelines for diagnosis, prognosis, natural history, and treatment of these individuals. The systematic review and clinical guidelines were published open-access in Neurology and Archives of Physical Medicine and Rehabilitation in August 2018. These clinical guidelines provide evidence-based recommendations for clinical practice, serving as the authoritative source for guidance on management of patients with severe brain injury and prolonged disturbance in consciousness. Other tools and support materials, such as an ethics commentary, lay summaries of the clinical guidelines, and a podcast with Dr. Giacino, are available on the AAN website. These materials serve as key resources for patients and families.
Minimum Competency Recommendations for Programs That Provide Rehabilitation Services for Persons With Disorders of Consciousness
Persons with a DoC require care from multidisciplinary teams with specialized training and expertise to address the complex needs of this clinical population. Dr. Giacino recently led a group that developed the first evidence-informed, consensus-based recommendations for programs that offer clinical care to patients with DoC, payers and caregivers seeking care. The position statement entitled “Minimal Competency Recommendations for Programs that Provide Rehabilitation Services for Persons with Disorders of Consciousness: A Position Statement of the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research, Traumatic Brain Injury Model Systems” provides recommendations for rehabilitation programs that provide services to persons with DoC.
The recommendations, developed in alignment with the Medicare Payment Advisory Commission’s (MedPAC) 2019 Report to Congress on Medicare and Proposed Reforms to the Health Care Delivery System, offer DoC providers, payers and consumers a means to evaluate the availability and quality of the procedures, services and professional disciplines that are necessary to provide high-quality, evidence-informed patient care. MedPAC has received a copy of the published position statement for possible inclusion in a forthcoming report to Congress concerning accreditation of inpatient rehabilitation facilities.
Curing Coma Campaign
The Curing Coma Campaign (CCC) was launched in 2019 by the Neurocritical Care Society, with backing from NIH, with a goal to develop and implement coma treatment strategies that improve human lives. Dr. Giacino serves on the CCC’s scientific advisory council and is chair of the Clinical/Behavioral Phenotype Common Data Element Workgroup. Since its launch, the CCC has held two “Curing Coma” NIH virtual symposiums (2020, 2021), which brought together leaders in clinical care, research, and the public health of coma and DoC. Dr. Giacino presented and chaired sessions at both Curing Coma events on Challenging the future of research for coma and disorders of consciousness Long-Term Recovery and Research Priorities for Early Clinical Trials.
National Academies of Science Engineering and Medicine (NASEM) Committee on Accelerating Progress in TBI Research and Care
The Committee on Accelerating Progress in TBI Research and Care, sponsored by the US Department of Defense, was formed under the auspices of NASEM to gather input from experts and stakeholders, explore the health burden of TBI, and identify gaps and opportunities to accelerate research and improve care for persons with TBI. Dr. Giacino was invited by the Committee to provide expert testimony on May 24, 2021 on key considerations in DoC clinical care and research, including strategies for improving diagnostic and prognostic accuracy and improving the effectiveness of therapies for persons with DoC. A recording of his testimony can be viewed online.