Identifying Barriers to Care in the Pediatric Acute Seizure Care Pathway

Abstract

We aimed to describe the acute seizure care pathway for pediatric patients and identify barriers encountered by those involved in seizure care management. We also proposed interventions to bridge these care gaps within this pathway. Methods:We constructed a process map that illustrates the acute seizure care pathway for pediatric patients at Boston Children's Hospital (BCH). The map was designed from knowledge gathered from unstructured interviews with experts at BCH, direct observation of patient care management at BCH through a quality improvement implemented seizure diary and from findings through three studies conducted at BCH, including a prospective observational study by the pediatric Status Epilepticus Research Group, a multi-site international consortium. We also reviewed the literature highlighting gaps and strategies in seizure care management.Results: Within the process map, we identified twenty-nine care gaps encountered by caregivers, care teams, residential and educational institutions, and proposed interventions to address these challenges. The process map outlines clinical care of a patient through the following settings: 1) pre-hospitalization setting, defined as residential and educational settings before hospital admission, 2) BCH emergency department and inpatient settings, 3) post-hospitalization setting, defined as residential and educational settings following hospital discharge or clinic visit and 4) follow-up BCH outpatient settings, including neurology, epilepsy, and primary care provider clinics. The acute seizure care pathway for a pediatric patient who presents with seizures exhibits at least twenty-nine challenges in acute seizure care management.Significance: Identification of care barriers in the acute seizure care pathway provides a necessary first step for implementing interventions and strategies in acute seizure care management that could potentially impact patient outcomes.

Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery

“…Multidisciplinary teams (MDTs): Twenty-two articles (61%) assessed the role and importance of MDTs in maximising the effectiveness and continuity of care for PLWE, but there was no consistency on the HCPs included in the MDT. Most of these articles (n = 13) recommended approaches to MDT organisation to foster optimal care for PLWE across various care settings [6,25,26,28,30,[33][34][35][36][37][38][39][40]. The remaining articles reported on the role of MDTs within other components of integrated care (e.g., care coordination) or models of integrated care that have been implemented [22,23,[41][42][43][44][45][46][47].…”

“…and organisations for PLWE and families [22,36,37], mental health services [23,36], and community HCPs [23,36] -the social care sector [23,30,37,41], the voluntary sector [18,22,25], and the education sector [18,23,25,30,37,39,45].…”

“…Clinical practice guidelines & care pathways: Thirteen articles (36%) assessed the use of clinical practice guidelines (CPGs) and/or care pathways in epilepsy services. Six articles evaluated care pathways for emergency seizure management for adults [43,46,47] and children [39], for homeless PLWE [41], and for chronic disease management [38]. Seven articles evaluated the use of CPGs: during transition services [19], for the referral of complex epilepsy [6,31], for the treatment of paediatric seizures [18], in telepharmacist medication recommendations [22], in primary care follow-up and management of PLWE [6,29], and in person-and-family centred treatment planning [16].…”

“…Care coordination: Thirteen articles (36%) assessed care coordination, the management and organisation of individual medical needs across their lifetime, in epilepsy care services. Five articles focused specifically on nurseled care coordination [38,39,42,44,45]. The remaining eight articles focused on the care coordinator role in MDTs [28,33,35,36,48], in identifying the varied and often complex needs of PLWE [6,19], and in assisting with pathways to surgery evaluation [28,31].…”

Healthcare Providers and Parents Highlight Challenges of Pediatric Hand Fracture Care

“…Care pathways are population-specific, evidencebased clinical decision guides with the aim of standardizing care to improve health outcomes. 5 Care pathways have been successfully implemented in pediatrics, including the management of asthma in a primary care setting, 6 outpatient seizure care, 7 and cancer symptom management 8 ; however, to our knowledge, there is no care pathway for the low-risk pediatric hand fracture developed an evidence-based clinical prediction rule for pediatric hand fracture triage called the "Calgary Kids' Hand Rule" (CKHR) to assist physicians in differentiating fractures that require specialized care by a hand surgeon (high-risk or "complex") from those that do not (low-risk or "simple"). 9 The CKHR is based on a risk index of six predictors of fracture complexity: angulation, condylar involvement, dislocation, displacement, malrotation, and open fracture.…”