Priorities in pediatric epilepsy research

Abstract

The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care-particularly epilepsy specialty and behavioral health care-and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous.

Epilepsy, comorbid conditions in Canadian children: Analysis of cross-sectional data from Cycle 3 of the National Longitudinal Study of Children and Youth

“…2 Population-based studies on prevalence of epilepsy and comorbid conditions are listed among the priorities for the public health dimension of epilepsy in the recent report issued by the Institute of Medicine (IOM). 3 We previously determined prevalence of epilepsy in Canadian children using Cycles 2 and 3 of National Longitudinal Survey of Children and Youth (NLSCY) data and found our estimates to be comparable to other published studies. 4 In the present study, we extend the analysis to focus on the comorbid conditions associated with epilepsy in children; namely cerebral palsy, mental handicap (intellectual disability), learning disability, emotional and nervous difficulties using data from Cycle 3 which had the largest number of children diagnosed with epilepsy.…”

Research priority setting in childhood chronic disease: a systematic review

“…Both studies suggested that professionals prioritise pharmacological therapy and basic science topics, while paediatric patients and their caregivers prioritised mostly psychosocial health and non-pharmacological treatment, for example, education, diet and lifestyle changes 21 90. We observed a similar trend across all included studies; for example, a study on epilepsy involving only researchers predominantly prioritised aetiology, risk factors and medical therapies,34while another epilepsy-focused study that included parents generated priorities relating to education, patient/provider/community communication, treatment adherence and access to healthcare 89. These results suggest that patient involvement in research priority setting is important in generating a research agenda that encompasses the full spectrum of issues that affect patients.…”

“…In one palliative care study, the top priority was ‘ Children’s understanding of death and dying ’,69while an epilepsy study prioritised ‘ What do parents and providers understand about the seriousness of seizures and the need to control them as soon as possible? ’ 89. Education strategies to improve patient,43 52 67 78 83 92 103 healthcare provider45 46 73 83 105 and parent45 46 52 56 64 82 85 89 102 105 knowledge were prioritised.…”

Parental knowledge, attitudes, and behaviors towards children with epilepsy in Belgrade (Serbia)

“…It has been highlighted that parental engagement in pediatric epilepsy care in terms of communication and shared decision-making represents a crucial factor in the management of this neurological disorder [12]. Still, young persons and their parents feel that medication management of epilepsy is the only priority in a health-care setting [13].…”