A unique Australian study into Traumatic Brain Injury (TBI) is helping health professionals better understand the range of factors that improve rehabilitation outcomes for people with TBI.

The Longitudinal Head Injury Outcome Project, which examines the psychological and cognitive consequences of brain injury, is a large, ongoing study which has tracked 3000 people with TBI since 1995.

The project, a collaboration between the Monash Epworth Rehabilitation Research Centre and TAC, is led by Centre director and Monash University Professor of Neuropsychology Jennie Ponsford.

Professor Ponsford says the study, which recently received renewed TAC funding, records and examines the experiences of TBI patients treated at Epworth, following their discharge from rehabilitation.

“We set up this longitudinal study where we follow up people at one, two, three, five, 10, 20 and soon we will be starting 30 year follow ups of the patients,” she says.

“It’s enabled us to identify what are the key long-term problems they experience, which tend to be more problems with their cognitive function and their behaviour and their emotional state, more than physical problems.

“That then has enabled us to make changes to our rehabilitation program and we’ve also, based on the findings, set up specific treatment trials to address some of the key issues that have emerged from the study.”

What is TBI?

TBI is a complex injury to the brain, often the result of a blow to the head, which leads to temporary or permanent disruption in brain function, that impacts a range of physical, sensory and cognitive systems.

While mild TBI can cause short-term symptoms such as dizziness, blurred or double vision, headaches, insomnia and poor balance, moderate or severe TBI can result in long-term cognitive and behavioural changes, including a shortage of attention, difficulties with new learning and memory, and impaired planning and problem-solving.

Professor Ponsford, who has co-authored a book on rehabilitation for TBI, says while the physical outcomes of achieving independence in activities of daily living is positive, more than two thirds of people with TBI experience continuing problems with memory, concentration, speed of thinking, and difficulties when it comes to planning and organising their daily activities.

“They also unfortunately often have personality changes - so they’re more irritable or short tempered, more impulsive, and that makes them more difficult to get on with, and so they have a lot of social interaction problems and tend to lose their friends,” she says.

“They may get back to study but they then have difficulty holding down a job, and then in the long-term they become anxious and depressed and socially isolated.”

Research and treatment

The centre’s research is now pointing to a greater understanding of effective treatments for people with TBI.

Professor Ponsford says psychologists are now being encouraged to use an adapted form of Cognitive Behaviour Therapy that taps into teaching people with TBI more repetition, using handouts and shorter sessions, to reduce anxiety and depressive symptoms.

Some of the centre’s other treatment studies focus on tackling the significant problem of fatigue and sleep disturbance in people with TBI.

Professor Ponsford says the centre is studying the impact of melatonin on sleep difficulties and light therapy for fatigue.

“Light therapy is exposing the person to short wave length light in the morning,” she says.

“It helps them be more aroused for the rest of the day and reduces their fatigue and day time sleepiness.

“The other study is doing psychological therapy for people with fatigue and insomnia - helping them to better pace their lifestyle and manage their sleep problems.

“We’ve also just published some papers that are showing that that is also effective in helping their fatigue and sleep problems.”

Another large study, funded by the Institute for Safety, Compensation and Recovery Research (ISCRR), provides positive behaviour support intervention to people with severe behaviour problems in the community.

“I’ve got six clinicians who are psychologists or occupational therapists or speech pathologists who work with us to deliver the therapy, and it’s about going into people’s homes and creating a more positive environment around the person, helping make them more motivated and changing the triggers of their behaviour around them.”

How to care for TBI patients

Professor Ponsford says it’s important for clinicians to understand people with TBI will experience long-term difficulties, that impact much more than their physical capabilities.

“A physiotherapist who is working with the patient needs to really understand how to manage their behaviour, how to interact with them appropriately to do that, and the team really has to be all working on the same goals, which are in the interests of the client,” she says.

“And to also be thinking about what motivates the client from the beginning, not just about what the therapist wants to achieve.

“The therapist might want to achieve better mobility, better range of movement, better upper limb function, better independence in preparing meals but that might not be what matters to the patient.

“What matters to the patient is that they might want to get back to driving or get back to work or be with their mates, and so I think it’s very important to try and craft rehabilitation to be meeting the goals of the patient to maximise their motivation.”

Professor Ponsford says in the early stages of recovery, people with TBI often have little awareness of the changes to their brain function, which can create challenges for rehabilitation.

“They can’t see the reason why they are in rehabilitation - they just want to get out and go home. It can be very easy for therapists to set all their goals for them and then the person with a brain injury is not really kind of with them on the same page.”

As a result, Professor Ponsford says it’s imperative clinicians engage the patient’s family from the beginning of recovery, and throughout the rehabilitation process.

“Clinicians need to understand the perspective of this young person who has got all the sort of goals and aspirations in life that they had before they had their injury, and who really have no idea of what lies ahead of them in terms of how the effects of this injury is going to impact on them,” she says.

“They need to get alongside that person, and go forward with them, in setting the goals of rehabilitation.”