CTDA 1013: Posttraumatic Stress in Children Age 6 to 15 Hospitalized for Traumatic Brain Injuries, Australia, 2004-2008 (ICPSR 39602)
This study prospectively assessed psychological and cognitive sequelae of traumatic brain injury (TBI) in children. Multiple factors may influence children's functioning following head injury including injury severity, pre-injury child factors, and family factors. Overall study aims were to describe the relationships between these factors and children's recovery in the eighteen months following their injury, to examine the relationship between children's cognitive impairments post injury and psychological distress related to the injury event, and to examine the role of PTSD in children's recovery from TBI.
The study enrolled children age 6 to 15 admitted to hospital after an accident resulting in mild to severe TBI, and one parent per child. Children and parents completed research assessments within 2 months of the accident, and at 3, 6, 12, and 18 months post-accident. Child health and behavior, health-related quality of life, parenting, and parent posttraumatic stress were assessed at all time points, and child posttraumatic stress symptoms were assessed at 3, 6, 12, and 18 months.
Anki for Spanish Speakers with Aphasia, United States, 2022-2023 (ICPSR 39700)
This study aimed to address the communication needs of Spanish speakers with aphasia by helping them learn scripted sentences using open-source software. The core of learning scripted sentences is to support people with aphasia to learn daily-life sentences to participate in their communities. This study had two specific aims.
First, to develop a scripted sentence treatment repository in collaboration with stakeholders through an iterative design process. Scripted sentences were designed with and for Spanish speakers with aphasia to ensure that treatment resources were linguistically and culturally appropriate.
Second, to examine the acceptability, usability, and preliminary efficacy of scripted sentence training delivered via open-source software. Participants completed baseline, treatment, and follow-up phases (~13 sessions each), learning a set of sentences (~45 each) from the repository in a single-subject multiple baseline design. Participants and their care partners were interviewed regarding their perceptions of acceptability, usability, and preliminary efficacy. Participants also completed the Client Satisfaction Questionnaire-8 and the System Usability Scale.
Everyday Needs Assessment for Cognitive Tasks (ENACT) Study (ICPSR 221803)
Improving Transition from Acute to Post-Acute Care following Traumatic Brain Injury (BRITE), United States, 2018-2022 (ICPSR 39094)
The BRITE study (Brain Injury Rehabilitation: Improving the Transition Experience) was a six-center, 1:1 randomized controlled pragmatic trial with masked outcome assessment that compared the effectiveness of two established approaches to managing transition from inpatient rehabilitation facility discharge to the next phase of care for individuals with moderate-to-severe traumatic brain injury (TBI). The two established transition methods were (1) a standardized version of existing discharge procedures used at all six sites and (2) a standardized remotely-delivered case management approach that extended beyond the point of discharge, based on the protocol used within the Veteran's Health Administration and enhanced with input from patient and family stakeholders. The sample was stratified by site and discharge location (skilled nursing facility vs. discharge to home/community) based on the relatively lower frequency of discharge to facility (22 percent across all six study sites in 2015) and the expectation of high impact of discharge destination on outcomes. When a caregiver was available for an enrolled patient, they were also approached for consent to be surveyed, with some patients having up to two caregivers enrolled to account for changes in primary caregiver.
The following key outcome domains were assessed: (1) ability of patients to participate in the home and community as independently as possible, (2) health-related quality of life, (3) access to appropriate healthcare and reduced emergent or urgent healthcare, and (4) caregiver outcomes. These outcomes were assessed at 3, 6, 9 and 12 months after discharge from inpatient care. Participants were also given the standard TBI Model Systems follow-up assessment one-year post-injury. Types of medical insurance coverage and satisfaction with healthcare were examined at 6 and 12 months post-discharge.
2018 TBI Model System Collaborative: Characterization and Treatment of Chronic Pain after Moderate to Severe Traumatic Brain Injury (ICPSR 193506)
Barriers and Facilitators to the Receipt of Treatment for Psychiatric Disturbances following Traumatic Brain Injury, United States, 2015-2016 (ICPSR 38039)
The Traumatic Brain Injury Model Systems National Data and Statistical Center (ICPSR 36589)
The Traumatic Brain Injury Model Systems National Data and Statistical Center (TBINDSC) located at Craig Hospital in Englewood, Colorado, is a central resource for researchers and data collectors within the Traumatic Brain Injury Model Systems (TBIMS) program. The primary purpose of the TBINDSC is to advance medical rehabilitation by increasing the rigor and efficiency of scientific efforts to longitudinally assess the experience of individuals with traumatic brain injury (TBI). The TBINDSC provides technical assistance, training, and methodological consultation to 16 TBIMS centers as they collect and analyze longitudinal data from people with TBI in their communities, and as they conduct research toward evidence-based TBI rehabilitation interventions.