Living with childhood epilepsy

Receiving a Vice Chancellor’s Commendation was the icing on the cake for Macquarie University PhD graduate Dr Mark Sabaz, who last year completed his study into the quality of life in children with epilepsy. This unexpected accolade has prompted Sabaz to further his research in the future.

Path to neuropsychology

It was during undergraduate study (BSc Honours) at Macquarie that Sabaz initially developed an interest in neuropsychology. The interesting behaviours that people exhibit after disease or injury to the brain, and Oliver Sacks’ book The Man Who Mistook His Wife For a Hat particularly stood out in his mind. After a year of travelling and assessing his options, Sabaz decided to learn more about the field and obtained a position in epilepsy research.

Quality of life in children with epilepsy

According to Sabaz, the childhood epilepsy population is a very diverse one. Through his work as a research assistant, he found that many studies were selective in their inclusion criteria.

“As a result we knew very little about the quality of life of children with epilepsy and intellectual disability,” he explains. “I was motivated to address these gaps in research by doing my PhD.”

Sabaz’s research was a multi-centre study which included the Sydney Children’s Hospital, Children’s Hospital at Westmead, Royal Melbourne Children’s Hospital, Austin Medical Centre, and the Miami Children’s Hospital in the United States.

“My PhD involved the development of a parent-rated questionnaire to evaluate the quality of life of children with epilepsy aged between four and18 years – the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE),” says Sabaz. “It assesses five domains of life functioning including physical functioning, emotional well-being, social functioning, cognition and behaviour.”

Results

The QOLCE has been proven as a reliable and valid questionnaire for assessing the quality of life of children with epilepsy and is now being adapted for use around the world.

Amongst his findings Sabaz discovered that epilepsy does impact on a child’s quality of life and that children with comorbid intellectual disability are particularly affected.

Life with a chronic illness

“Thanks to my PhD I have gained a greater appreciation of the impact of having a chronic illness and how this impact goes beyond the immediate physical effects to affect broader psychosocial functioning and quality of life,” says Sabaz. “We need to do more to combat stigma and social prejudices that are faced by people with chronic illness through educational campaigns.”

Career path

Sabaz is now employed as a neuropsychologist in the Brain Injury Rehabilitation Unit at Liverpool Hospital. “I determine cognitive strengths and weaknesses and assess emotional and behavioural functioning of patients after they sustain an injury to the brain,” he says. “On the basis of this assessment I generate recommendations to assist with the patient’s rehabilitation and future needs.”

Future research

Sabaz plans to commence his own research in the near future. He hopes to do so by attracting funding from agencies like the National Health and Medical Research Council and the Australian Research Council.

For further information on neuropsychology at Macquarie University visit the Department of Psychology Website: www.psy.mq.edu.au/postgraduate.htm

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