Brain Injury Outpatient Education and Care Navigation

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PROJECT SUMMARY/ABSTRACT Disability after traumatic brain injury (TBI) significantly affects U.S. Hispanic children. Compared to non- Hispanic children, they have lower health related quality of life, self-care, and communication skills 3 years after injury; even though differences are not present at hospital discharge. Long-term rehabilitation improves outcomes, but timely initiation is key since most functional gains happen 3 to 6 months after TBI. Parents play a significant role in their child’s recovery. However, Hispanic parents face substantial barriers that can result in delayed treatment initiation and suboptimal outcomes. We developed and pilot tested the 1st theory-based intervention for Hispanic children and their parents consisting of Brain Injury Education and outpatient Navigation (1st BIEN). Based on Social Cognitive theory, 1st BIEN integrates in-person education enriched by video content delivered through mobile phone devices, with outpatient navigation during transitions from inpatient to outpatient care and during school return. The 1st BIEN pilot, established feasibility and acceptability for our program and 86% attendance to initial follow-up care. We propose a multicenter randomized controlled trial to test the efficacy of 1st BIEN to maintain long-term adherence to rehabilitation and determine its effect on children’s functional outcomes. We will enroll 150 parent-child dyads; children (6-17 years), with moderate to severe TBI and their parents, from 5 centers in 4 states with Hispanic population predominantly from Mexico and Central America. A higher risk group, whose educational attainment, income and English proficiency are lower compared to other Hispanic groups in the U.S. Parents randomized to the intervention will receive (1) One in-person education session, using the culturally, linguistically and literacy relevant 1st BIEN booklet, plus bi-weekly video reviews individually tailored to the child’s TBI and therapies; and, (2) three months of bilingual outpatient navigation, modeling and coaching problem solving skills. Attention control parents will receive one in person-education session using the 1st BIEN booklet, monthly non-TBI (Well-child) texts and usual institutional follow up care. The primary outcome is treatment adherence at 6 months post-discharge measured by percentage of follow-up appointments attended during the prescribed time at centralized acute facilities, community care providers and individual therapies. Secondary outcomes are functional status of the child using PROMIS parental report measures; and, parental health literacy, self-efficacy and mental health measured at 3, 6, and 12 months after discharge. Children’s academic performance will also be assessed using school records. Exploratory analyses will test possible moderators such as pre-injury parental acculturation; and mediators, such as post intervention parental TBI-knowledge, self-efficacy, anxiety and depression. Our study evaluates a novel, flexible and scalable approach using mobile phone devices to aid transitions of care, increase treatment adherence and improve TBI outcomes. It addresses the needs of an understudied population and can serve as a model for TBI family centered interventions for at risk groups.