People with refractory epilepsy often experience long delays in diagnosis and referral from primary care to specialist tertiary centres that can offer effective treatment such as surgery, an Australian study has found.
The lack of standardised referral pathways and poor communication between GPs, general neurologists and tertiary centres may mean that patients with refractory epilepsy wait years or even decades before being referred for surgery, according to findings from NSW researchers.
Interviews with six neurologists and 12 patients with refractory epilepsy elicited comments showing that referral processes for specialist treatment were often slow, fragmented and hampered by misunderstandings between doctors and patients, lack of engagement between health professionals, as well as administrative barriers such as long waiting lists for specialist clinics.
In addition, the study found that only a third of GPs were aware of the definition of refractory epilepsy as being failure of two anti-epileptic drugs, and that even when identified, referral for refractory epilepsy was hampered by reasons such as cost, waiting times, travel distance or lack of a neurologist, especially in rural and regional areas.
Neurologists reported that identifying someone who has uncontrolled or drug-resistant epilepsy may take between one and four years, and that even when seen by a specialist centre there were often ongoing problems in management due to poor communication between hospitals and the primary care doctors responsible for the patient’s long term care.
Epilepsy specialists said that once assessment and treatment was complete, a big problem was “the accumulation of chronic care patients that will come here and won’t go back to their referring doctor as they only want to see the specialist in the [tertiary epilepsy centre] system.”
“Ultimately, [tertiary epilepsy centre] clinics become blocked, creating overcrowding and an inability to cope with growing patient numbers. Subsequently, there are delays in receiving and processing new referrals, compounded by hospital resource constraints,” the study authors said.
They also found that attempts made by epilepsy specialists to engage with GPs, to offer training and support and to develop potential GP subspecialties in epilepsy, fell by the wayside.
“[Neurologists] described a lack of response and general disinterest among both GPs and primary healthcare networks to get more involved, resulting in training events not going ahead and the need to refocus on targeting individual referring GPs,” they wrote.
Epilepsy specialist neurologists also commented that general neurologists and GPs did not always communicate well to patients or know that the chance of further success after failing two or three AEDs for seizure freedom was less than 10%, while the chance of success with surgery is 50–60%.
And despite having a high cure rate and being a potential life-changing procedure general neurologists remarked that, at the mention of brain surgery, patients tended to panic and the a referral required extensive explanation of the process involved, including its risks.
“However, this conversation is not routinely undertaken in the primary and community healthcare setting and depends on the level of the healthcare professionals’ own knowledge and understanding. As a result, people appeared more inclined to refuse or delay referral to a tertiary epilepsy centre, feeling ill-informed,” they study authors noted.
“This study has identified a noticeable lack of standardised care across epilepsy-related healthcare sectors, which recognises a need for developing and implementing clearer epilepsy-related guidelines and CPD in the primary and community care settings,” they said.
“This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimise shared-care practices. Ultimately, prioritising person-centered care on both patients’ and professionals’ agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy,” they concluded.
The study is published in Epilepsy and Behavior journal.