The development of a provincial pediatric epilepsy program: an analysis of early multidimensional outcomes
| dc.contributor.author | Almojuela, Alysa | |
| dc.contributor.examiningcommittee | Xu, Qi ( Pediatrics and Child Health) Ritchie, Leslie (Clinical Health Psychology) Hancock, B. J. (Surgery) | en_US |
| dc.contributor.supervisor | Serletis, Demitre (Surgery) | en_US |
| dc.date.accessioned | 2021-01-13T12:38:01Z | |
| dc.date.available | 2021-01-13T12:38:01Z | |
| dc.date.copyright | 2021-01-12 | |
| dc.date.issued | 2020 | en_US |
| dc.date.submitted | 2020-12-28T19:29:29Z | en_US |
| dc.date.submitted | 2021-01-12T22:33:32Z | en_US |
| dc.degree.discipline | Surgery | en_US |
| dc.degree.level | Master of Science (M.Sc.) | en_US |
| dc.description.abstract | Introduction Access to epilepsy surgery is improving across Canada, but the province of Manitoba, with a population of approximately 1.37 million, has - until recently - lacked the local infrastructure to deliver surgical epilepsy care. This thesis aims to describe the change in care provided to pediatric epilepsy patients in Manitoba since the formation of a comprehensive Pediatric Epilepsy Program, provide an early analysis of local outcomes, and present a framework for program development. Methods Data was collected retrospectively from medical records on patients who previously had epilepsy surgery in Manitoba, and prospectively on new, incoming patients. Caregivers were asked to complete questionnaires on quality of life and satisfaction with the Program. An online database was created to capture demographic information, seizure and neuropsychological outcomes, patient and caregiver quality of life, and caregiver satisfaction. Descriptive statistics were used to describe these outcomes. Results Prior to the formation of the Pediatric Epilepsy Program, 16 patients underwent vagal nerve stimulator (VNS) insertions. Mean time to surgery was 5.5 +/- 2.92 years. At a follow-up of 1-5 years, 1 patient (6.25%) achieved Engel class I outcome, 12 patients (75%) achieved Engel class III outcome, and 3 patients (12.5%) achieved Engel class IV outcome. After formation of the Pediatric Epilepsy Program, 14 patients underwent a variety of epilepsy surgeries, including 11 resective procedures and 3 VNS insertions. Mean time to surgery was 5.49 +/- 2.99 years. At a follow-up of 3-12 months, 11 patients (78.6%) achieved Engel class I outcome, 2 patients (14.3%) achieved Engel class III outcome, and 1 (7.1%) patient achieved Engel class IV outcome. Neuropsychological testing remained stable in the 2 patients it was completed on. The average QOLCE-55 score measuring patient quality of life was (59.7 +/- 23.2)/100. The average CarerQol-7D score measuring caregiver quality of life was (78.3 +/- 18.6)/100. Caregiver satisfaction was high with an average rating of (9.4 +/- 0.8)/10. Conclusion Access to epilepsy surgery has improved for children in Manitoba with favorable multidimensional outcomes. Structural organization, funding and multidisciplinary engagement are necessary for program sustainability. A longitudinal database is recommended for continuous quality assessment and improvement. | en_US |
| dc.description.note | February 2021 | en_US |
| dc.identifier.uri | http://hdl.handle.net/1993/35220 | |
| dc.language.iso | eng | en_US |
| dc.rights | open access | en_US |
| dc.subject | Epilepsy surgery | en_US |
| dc.subject | Pediatric epilepsy | en_US |
| dc.subject | Epilepsy program | en_US |
| dc.subject | Program development | en_US |
| dc.subject | Neurosurgery | en_US |
| dc.title | The development of a provincial pediatric epilepsy program: an analysis of early multidimensional outcomes | en_US |
| dc.type | master thesis | en_US |
| local.subject.manitoba | yes | en_US |