Gaps in the Care Delivery Process of Moderate to Severe Traumatic Brain Injury Rehabilitation

Research Objectives: To characterize gaps in care for the patient-caregiver dyad during the first six months after moderate and severe traumatic brain injury (msTBI).

Design: The CG-Well study is a single site, randomized controlled trial, comparing a phone and web-based intervention (CG-Well) to control (information, support, referral). In both groups, caregivers are contacted by a coordinator weekly for the first month after injury, then monthly until six months. To date, 69 caregivers (goal 100) have been enrolled and 33 randomized to the CG-Well group. Many needs arise that are perceived gaps in care of the survivor. A descriptive analysis was performed to better understand gaps in care delivery among participants randomized to CG-Well.

Setting: Caregivers recruited from a large Midwest trauma center.

Participants: Adults over 18 years old who identify as the informal caregiver of the patient with msTBI, defined as a spouse, partner, family member, friend, or neighbor assisting the survivor with activities of daily living and/or medical tasks, and are enrolled while the survivor is in the ICU. 69 caregivers have been enrolled in the trial, 33 have been randomized to the CG-Well group, 33 have been randomized to the control group, and 3 have yet to reach the randomization stage. Caregivers were 76% female; 79% were white, 16% were black; 44% were a parent, and 32% were a spouse/partner.

Interventions: CG-Well contains 43 web-based modules, entailing support, education, and skill building for caregivers. Calls are structured to include a tailored discussion of unmet needs of the dyad, goal-setting, and review of pertinent modules. Participants discuss unmet needs, the coordinator reviews pertinent modules, and records the reviewed modules in the study database.

Main Outcome Measures: Count of CG-Well modules reviewed during participant-coordinator calls.

Results: A total of 196 CG-Well modules were reviewed across 193 calls from participants randomized to the CG-Well intervention group. The most common modules reviewed related to gaps in care were: legal and financial issues (35, 18.7%), the survivor's cognitive problems (29, 15.5%), communicating with medical teams (24, 12.8%), preparing the home (24, 12.8%), the survivor's emotions (24, 12.8%), managing medical issues (22, 11.8%), and finding the right skilled nursing facility (18, 9.6%).

Conclusions: This analysis illuminated numerous perceived gaps in care delivery. Awareness can allow interdisciplinary rehabilitation teams to address care gaps by instituting changes in workflow, caregiver communication, and referral to further resources. Further research and analysis should be done to examine associations of caregiver needs with survivor outcomes.

Author(s) Disclosures: N/A