Design, methods, and baseline characteristics of the Brain Injury Education, Training, and Therapy to Enhance Recovery (BETTER) feasibility study: a transitional care intervention for younger adult patients with traumatic brain injury and caregivers

Objectives: We developed a patient- and family-centered traumatic brain injury (TBI) transitional care intervention, called BETTER (Brain Injury Education, Training, and Therapy to Enhance Recovery), to improve quality of life (via SF-36) of younger TBI patients of different racial groups discharged home from acute hospital care and caregivers. We describe our design, methods, and baseline characteristics for our feasibility study. Methods: We co-developed BETTER with input from key stakeholders (TBI patients and caregivers, healthcare providers, and interdisciplinary research team members). BETTER is guided by the Individual and Family Self-Management Theory, our team’s prior research, as well as literature used to support, educate, and train patients and families recovering from TBI and other conditions. The intervention is delivered by trained clinical interventionists (transitional care managers), beginning 24–72 h pre-discharge to 16 weeks post-discharge. BETTER offers tailored transitional care support to patient/family dyads, including assessing needs; establishing goals; coordinating post-hospital care, services, and resources; and providing patient/family education and training on brain injury coping skills. The majority of the intervention is delivered remotely via phone and remote video conferencing platform (Clinicaltrials.gov: NCT04584554). Results: We enrolled 15 dyads (N = 31, 15 patients, 16 caregivers) in this single arm, single center feasibility study. Most patients were men (n = 11, 73.33%), had a mean age of 39.07 (SD: 15.15), and were Black (n = 9, 60%), White (n = 5, 33.3%), or American Indian (n = 1, 0.66%). Injury severities were mild (n = 6, 40%), moderate (n = 4, 26.6%) or severe (n = 5, 33.33%). Most patients were insured (n = 10; 66.7%), had a high school education (n = 6; 40%); and earned $30,000 or less per year (n = 11; 73.3%). Most caregivers were married (n = 9, 56.25%) women (n = 14, 87.5%) with a mean age of 43.38 (SD: 10.45) and were Black (n = 8, 50%), White (n = 7, 43.75%), or American Indian (n = 1, 0.62%). Most caregivers identified as the spouse (n = 7; 43.75%) or parent (n = 6; 37.5%) of the patient. Conclusions: BETTER is among the first TBI transitional care intervention to address needs/preferences for younger TBI patients of different racial groups after discharge home from acute hospital care and families. Findings can be used to inform future work.