Epilepsy healthcare - for caregivers

Anna Edelvik Tranberg, senior physician neurology, Christina Charling, nurse and epilepsy surgery coordinator, and Kristina Malmgren, senior physician and professor at the epilepsy monitoring and investigation unit, EMU. Photographer: MATHIAS BERGELD

The Center for Advanced Epilepsy Care increases the quality of care for both children and adult epilepsy patients with complex needs. All interventions and care for children and adolescents are adapted to their and their family's needs and follow the guidelines of the Convention on the Rights of the Child.

Sahlgrenska University Hospital offers a coordinated care chain that makes operations clear both internally and for patients and external referrals. After a referral to us, a referral assessment is made. We have regular video conferences for caregivers with whom we have an established collaboration, both for children and adults. These can result in advice regarding further investigation or treatment that can be carried out at home. Alternatively the patient is called to visit an epilepsy specialist at the Center for Advanced Epilepsy Care.

Regular multidisciplinary conferences

Regelbundna multidisciplinära konferenser

Här ses från vänster Åsa Nordborg logoped, Karin Johnsson, sjuksköterska och koordinator, Daniel Nilsson, överläkare och docent neurokirurgi, Sofia Olausson barnneurolog, Ivett Körhegyi och Björn Bjurulf överläkare och barnneurologer samt Liz Ivarsson barnneuroradiolog. Till höger Lena Bengtsson, fysioterapeut, Julia Rezanova neuropsykolog, Bertil Rydenhag professor neurokirurgi, Tove Hallböök, överläkare och docent barnneurologi och Josefin Nilsson överläkare och docent neurofysiologi vid multidiciplinär konferens.

Seen here from the left is Åsa Nordborg, speech therapist, Karin Johnsson, nurse and coordinator, Daniel Nilsson, senior physician and docent of neurosurgery, Sofia Olausson pediatric neurologist, Ivett Körhegyi and Björn Bjurulf, senior physicians and pediatric neurologists and Liz Ivarsson, pediatric neuroradiologist. On the right side: Lena Bengtsson, physiotherapist, Julia Rezanova, neuropsychologist, Bertil Rydenhag, professor of neurosurgery, Tove Hallböök, senior physician and associate professor of child neurology and Josefin Nilsson, senior physician and associate professor of neurophysiology. They are participating in a multidisciplinary conference.

Several investigations may be relevant

Patients who are referred for advanced investigation meet with an epilepsy specialist during a physical visit or via video link within two months of the date of referral. Both genetic, neurometabolic and immunological investigations may be relevant. Often, previous investigation materials are requisitioned, especially MRI and EEG. If the patient is to be investigated surgically, plans are made for inpatient care where a video EEG is performed as well as an assessment by a neuropsychologist, supplementary MRI and possibly further investigations with, for example, functional MRI (fMRI), PET, lumbar puncture, and SPECT/SISCOM. If the patient lives outside of the Västra Götaland region, a payment bond from the home region is required.

The whole process: From referral to advanced treatment
After referral to Sahlgrenska University Hospital, a referral assessment is made. Here you can see an overview of which steps can be included in the care process.

Ongoing multidisciplinary conferences
The epilepsy surgery investigation is coordinated by the epilepsy surgery coordinator for children and adults, respectively. During the course of the investigation, continuous multidisciplinary conferences are held on further investigation steps and any decision on surgery. Sometimes an investigation with invasive video EEG is needed before deciding on surgery. This is usually carried out as a so-called stereo-EEG, with electrodes that are placed in the brain via small drill holes. Such a stereo EEG recording can sometimes be completed with thermocoagulation, when the areas where the epilepsy is deemed to have originated from can be heat treated. A care plan is drawn up and all investigation and treatment takes place in consultation with the patient and/or guardian. Throughout the process, the patient is kept informed of risks and chances of seizure freedom or improvement.

Links about epilepsy care – for caregivers

Clinical research in epilepsy healthcare
Within the Center for Advanced Epilepsy Care there are several separate clinical research groups with different orientations and with researchers from different healthcare professions.

How the EU brought together experts to treat epilepsy
In 2017, medical staff from 28 centers in 13 EU countries helped a family doctor diagnose and come up with a plan of treatment for a child with an unusual type of epilepsy.