Rationale:
Refractory epilepsy is a challenging entity to manage for physicians, caregivers, and patients. For physicians, there is published literature to help guide our decision regarding surgical candidacy of our patients[1]. However, for caregivers and patients, the decision to pursue surgery is much more complex, involving multiple internal and external factors[2],[3]. In order to provide optimal care for patients, providers must understand what factors are most important to caregivers. These discussions can help facilitate referral and pre-operative discussions, thus potentially preventing delays to surgery[4].
[1] Wilmshurst JM, Gaillard WD, Vinayan KP, et al. Summary of recommendations for the management of infantile seizures: Task Force Report for the ILAE Commission of Pediatrics. Epilepsia 2015;56:1185-97.
[2] Hauptman JS, Dadour A, Oh T, et al. Time to pediatric epilepsy surgery is longer and developmental outcomes lower for government compared with private insurance. Neurosurgery 2013;73:152-7.
[3] Kwan P, Arzimanoglou A, Berg AT, et al. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force.
[4] Shen, Alice, Kara T. Quaid, and Brenda E. Porter. 'Delay in pediatric epilepsy surgery: A caregiver's perspective.' Epilepsy & Behavior 78 (2018): 175-178.
Methods: A Stanford IRB-approved questionnaire was developed to explore caregivers’ perspectives on epilepsy surgery and the different factors that contributed to the decision to undergo surgery. Inclusion criteria were caretakers who were decision-makers for patients who were under 18 years old at the time of their first epilepsy surgery. Participants were recruited both in person during Epilepsy Clinic visits at Lucile Packard Children’s Hospital and online via Facebook pages of several epilepsy foundations
[1]. The questionnaire was also distributed to the Tuberous Sclerosis Alliance support group via their email newsletter. Data was collected over a period of 9 weeks.
[1] Tuberous Sclerosis Alliance, Epilepsy Foundation of America, Pediatric Epilepsy Surgery Support, Epilepsy Foundation of America, Sturge–Weber Foundation, Hemispherectomy Foundation, Hypothalamic Hamartomas, and Intractable Childhood Epilepsy Alliance. Results: One hundred twenty-nine people opened the survey. Seventy-one answered none or less than 10% of the questions and were not used. Fifty-eight people answered over 90% of the questions and were used in the analysis. There were equal number of male and female patients. Ninety-three percent (54/58) of families spoke English at home. Eighty eight percent (51/58) of caregivers reported Caucasian ethnicity. The mean age of seizure onset was 9.0 months (SD 22.22, 0-144). Every caregiver reported that trust in their neurologist and neurosurgeon was a very important factor in their decision to pursue surgery for the child. Interestingly less than ½ of the caregivers ranked getting a second opinion as very or somewhat important. Next to this, 97% of caregivers reported that preserving the child’s cognitive function, the neurosurgeon’s experience with the surgery, and the discussion of risks and benefits of the surgery were very important factors in their decision to pursue surgery. Factors that did not weigh in the caregivers decision to pursue surgery were, the family’s embarrassment of their child’s seizures, the child’s embarrassment about their seizures and child’s ability to drive were not at all important. Conclusions: From a caregiver’s perspective, trust in their child’s doctors, the discussions around risks and benefits of the surgery, and the experience of doctors were very important factors in the decision to undergo epilepsy surgery. Hence, if doctors are not comfortable having the discussion of epilepsy surgery with caregivers of children with refractory epilepsy, it may benefit the family to be referred to doctors who can appropriately have these discussions, particularly to neurologists and neurosurgeons with extensive experience in the procedures. As the trust issue was forefront future research should consider what factors are important for developing trust in their child’s epilepsy providers. Funding: No funding