Gaps in epilepsy care uncovered
17-year delay for surgery
28 July 2020
More than 80,000 Australians may be living with daily uncontrolled seizures from drug resistant epilepsy, known as refractory epilepsy, and can wait up to 17 years for life-changing surgery.
A significant new study from Macquarie University involving people living with refractory epilepsy, their families, neurologists and GPs has uncovered gaps in diagnosis and care which lead to delayed access to surgery.
Epilepsy is the world’s most common neurological condition, costing the Australian government $12.3 billion (2019-2020). Epilepsy effects up to 250,000 Australians, one third of whom have refractory epilepsy, where seizures are not controlled effectively by antiepileptic drug therapy.
Diagnosis for people with refractory epilepsy is often delayed, and quality of life is diminished by uncontrolled seizures, sometimes more than 20 per day, and resulting difficulties in maintaining relationships and employment.
Associate Professor Geoffrey Herkes, Senior Staff Specialist, Neurology, Royal North Shore Hospital, Sydney, and co-author on the research paper published in the journal Epilepsy and Behaviour, states:
Epilepsy is more common than people think, life changing and sometimes fatal, yet is overlooked and under resourced.
Epilepsy surgery (resection of the focal part of the epileptogenic lobe of the brain) can be a life-changing procedure in epilepsy management for approximately one third of people living with refractory epilepsy, with on average 62% success of achieving seizure freedom. However, people experience long delays before undergoing surgery.
The research found four key factors contributed to the delay in people receiving surgery:
1 | GPs are not equipped with the knowledge to diagnose refractory epilepsy, leading to delays in referring people to a specialist clinician or dedicated tertiary epilepsy centre. |
2 | People living with refractory epilepsy do not know the treatment options available to them, including when they should be referred to a specialist. |
3 | People fear surgery as they do not have access to up-to-date and accurate information about the benefits and risks of the procedure, or lack adequate information for their personal situation. |
4 | Information about a patient’s care is not sufficiently shared between healthcare professionals leading to missed opportunities for diagnosis and treatment. |
Lead researcher, Professor Frances Rapport from the Australian Institute of Health Innovation at Macquarie University, said that while GPs were pivotal for the care of people with epilepsy, the study highlighted that there are no national guidelines for GPs to direct them in when and how to refer patients to epilepsy specialists and there was not enough information about epilepsy being shared with the general public.
88% of GPs surveyed, all of whom were treating people with epilepsy, said they needed more information on epilepsy, and none had specific neurology training.
Professor Rapport said the study clearly demonstrated the necessity for more education around epilepsy, and support for healthcare professionals to collaborate more when caring for people living with refractory epilepsy.
Picture: L-R Associate Professor Geoffrey Herkes and Professor Frances Rapport
Open access journal article:
Open access journal article: Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia. Hutchinson, Karen; Herkes, Geoffrey; Shih, Patti; Francis-Auton, Emilie; Bierbaum, Mia; Ryder, Tayhla; Nikpour, Armin; Bleasel, Andrew F; Wong, Chong; Vagholkar, Sanjyot; Braithwaite, Jeffrey; Rapport, Frances. In: Epilepsy and Behavior, (2020), 111 doi: 10.1016/j.yebeh.2020.107232
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