Traumatic Brain Injury
Conditions
Brief summary
Traumatic brain injury (TBI) can have long-term and chronic effects on an individual's physical, social, and emotional health, impacting quality of life and the ability to engage in meaningful life roles. Despite the potential for long-term effects, much of the care for individuals with TBI is front-loaded in the weeks to months post-injury. Self-management and self-management training are key components of long-term care for many chronic health conditions, but they are not standard parts of care for individuals with TBI. In this study the investigators will address two objectives: 1) identify self-management priorities from the perspectives of individuals with chronic TBI, families, and health care providers and 2) pilot test an existing virtual community-based self-management training program (the Chronic Disease Self-Management Program (CDMSP)), to a) evaluate changes in quality of life, self-management self-efficacy, and other patient-reported outcomes before and after participating in the training, and b) identify barriers and facilitators to participating in community-based self-management training.
Interventions
BEHAVIORALParticipants will be referred to a community based self-management training program
Individuals will participate in a 6-week group training course run by a community-based organization that provides training in self-management skills for individuals with chronic health conditions.
Sponsors
Boston University Charles River Campus
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to 100 Years
Healthy volunteers
No
Inclusion criteria
* Aged ≥18 years at time of first TBI * At least one year since the most recent TBI * Received care at BMC's Concussion/TBI program for a TBI or concussion * At least partially involved in Self-care * Able to provide consent * Able to speak and understand English * Available for study duration.
Exclusion criteria
* • Aged \<18 at the time of their first TBI * Severe mental, cognitive, social, or emotional difficulties due to another neurologic, developmental, psychological condition, or active substance use disorder * Participating in another interventional clinical trial * Planned major surgery in the next 4 months. * Pregnancy (self-report). * Suspected or known drugs or alcohol abuse * Endorses suicidal ideation * All individuals with reduced decision-making capacity, an assigned LAR, or conservator.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| PROMIS Self-Efficacy to Manage Chronic Disease Scale | baseline, after the intervention on average 6 weeks | A patient reported outcome measure that assesses self-efficacy to managing chronic disease across 5 domains: Managing: Symptoms, Social Interactions, Medications, Emotions, and Daily Activities |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Quality of Life After Brain Injury | baseline, after the intervention on average 6 weeks | This tool was developed to assess quality of life among individuals with traumatic brain injury |
Contacts
CONTACTEmily Evans, PT, PhD
PRINCIPAL_INVESTIGATOREmily Evans, PT, PhD
Boston University Charles River Campus
Outcome results
None listed