Each year, about 3.5 million people sustain a traumatic brain injury (TBI) in the United States, and at least 25 percent of these injuries are classified as moderate to severe. Nearly half of those hospitalized for TBI have long-term disability. Most have psychological, physical, social, or work-related problems, which often become chronic. By talking with patients and family members, we found that returning to daily activities and regaining quality of life are major concerns. Outcomes are affected by the type and severity of the TBI, but the type of treatment someone with TBI receives is also important. What is available, whether they are experienced with the problems that those with TBI have, and how much treatment is available can affect outcomes as well. Community resources are sometimes limited, and providers are not always prepared to care for TBI-related problems, leaving many TBI survivors with unmet healthcare needs. These issues are made worse by the many problems caused by brain injury, making self-managing health care even more challenging. The healthcare system needs to provide early assistance for those who need it and take into account patient choices.
Currently, inpatient rehabilitation professionals are told to give people with TBI information, reassurance, advice, and referral resources. Some promising ways of helping people with TBI include using telephone and other mobile devices to reach patients after they leave the hospital, to regularly assess their individual needs and help them coordinate their health care, and to provide the information and resources that they need. These new strategies may lead to earlier return to activities and improved quality of life. No studies have compared the standard approach to discharge care with an approach that uses telecare to provide information and care coordination after discharge.
The main goal of this project is to find out how improving the transition from the hospital to outpatient care can improve the lives of people with moderate to severe TBI and achieve better results that are important to patients with TBI, their families, and healthcare providers. In this study, patients with TBI who are discharged from inpatient rehabilitation at one of six national TBI Model Systems sites will be randomized (like the flip of a coin) to: (1) Standardized Discharge Care (SDC) or (2) SDC plus a telecare program called Optimized Transition Care (OTC). The project team will compare functioning and quality of life at 3, 6, 9, and 12 months after hospital discharge in these two groups.
The researchers have formed a team of TBI patient and family stakeholders who have helped define the study aims, study population, treatments, and outcome measures, and will take part in all phases of the research. The project team has also found clinical, health system, policy/advocacy, and payer stakeholders to work on this project and help the researchers apply and distribute results in order to raise standards of care and improve healthcare systems for people with TBI.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.