Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study.

In the United States, the incidence rate of new or recurrent stroke is approximately 795 000 per year, and stroke prevalence for individuals over the age of 20 years is estimated at 6.5 million.1 Mortality rates in the first 30 days after stroke have decreased because of advances in emergency medicine and acute stroke care. In addition, there is strong evidence that organized postacute, inpatient stroke care delivered within the first 4 weeks by an interdisciplinary healthcare team results in an absolute reduction in the number of deaths.2,3 Despite these positive achievements, stroke continues to represent the leading cause of long-term disability in Americans: An estimated 50 million stroke survivors worldwide currently cope with significant physical, cognitive, and emotional deficits, and 25% to 74% of these survivors require some assistance or are fully dependent on caregivers for activities of daily living (ADLs).4,5 Notwithstanding the substantial progress in acute stroke care over the past 15 years, the focus of stroke medical advances and healthcare resources has been on acute and subacute recovery phases, which has resulted in substantial health disparities in later phases of stroke care. Additionally, healthcare providers (HCPs) are often unaware of not only patients’ potential for improvement during more chronic recovery phases but also common issues that stroke survivors and their caregivers experience. Furthermore, even with evidence that documents neuroplasticity potential regardless of age and time after stroke,6 the mean lifetime cost of ischemic stroke (which accounts for 87% of all strokes) in the United States is an estimated $140 000 (for inpatient, rehabilitation, and follow-up costs), with 70% of first-year stroke costs attributed to acute inpatient hospital care1; therefore, fewer financial resources appear to be dedicated to providing optimal care during the later phases of stroke recovery. Because there remains a …

Young Stroke: Resources for Patients, Their Families, and Caregivers for Long-Term Community Living

To describe the etiology of childhood arterial-ischemic stroke from a developing country and assess short-term neurologic outcome. Prospective observational study. Consecutive children between the age of >28 days to <12 years, admitted with the diagnosis of arterial-ischemic stroke were enrolled during the study period from January 2017 to December 2018. Short-term neurologic outcome was assessed with Pediatric Cerebral Performance Category (PCPC) scale and Pediatric Stroke Outcome Measure (PSOM). We enrolled 76 children with arterial-ischemic stroke, with a median age of 24 months (interquartile range 12-69), and 43 (57%) were boys. The most common risk factor for childhood arterial-ischemic stroke was arteriopathy in 59 (77%), followed by cardiovascular disorder in 12 (16%) children. Among 59 children with arteriopathy, 32 (42%) had infection-associated arteriopathies, 10 (13%) had mineralizing angiopathy, 10 (13%) had moyamoya disease. Pediatric stroke risk factors were classified according to Pediatric Stroke Classification and CASCADE primary classification. Short-term neurologic outcome was assessed at 3 months in 62 (82%) survivors. Among stroke survivors, 33 (61%) had sensory-motor deficits, and 24 (39%) had severe neurologic disability (PCPC ≥ 4). The presence of fever, encephalopathy, low Glasgow coma score at presentation, seizures, and infection-associated arteriopathy predicted severe neurologic disability at follow-up. The risk factors for pediatric arterial-ischemic stroke are different from developed countries in our cohort. Infection-associated arteriopathies, mineralizing angiopathy, and moyamoya disease are the most common risk factors in our cohort. Two-thirds of pediatric stroke survivors have neurologic disability at short-term follow-up.

Despite its importance in being among the top 10 causes of childhood death, there is limited data on the incidence of stroke in children and whether this has changed over time. We performed a systematic review and meta-analysis to estimate the worldwide incidence rate of pediatric ischemic stroke, identify population differences, and assess trends in incidence. We screened three databases (Medline, Embase, and Cumulative Index of Nursing and Allied Health Literature (CINAHL)) and a Google Search was performed up to October 2021. The protocol was pre-registered: PROSPERO: CRD42021273749. Data extraction and quality assessment were independently undertaken by two reviewers. A random-effects model was used for meta-analysis using Stata SE17 to calculate the overall incidence rate. Heterogeneity was assessed using I2. Meta-regression and assessment for bias were performed. Out of 4166 records identified, 39 studies were included in the qualitative synthesis and the quantitative meta-analysis. The incidence rate for all ischemic strokes varied from 0.9 to 7.9 per 100,000 person-years, with a pooled incidence of 2.09 (95% confidence interval (CI): 1.57-2.76). The pooled incidence was 1.28 (95% CI: 0.75-2.19) per 100,000 person-years for arterial ischemic stroke, and 0.56 (95% CI: 0.31-1.02) per 100,000 person-years for cerebral venous sinus thrombosis. The incidence of arterial ischemic stroke was high in neonates, less than 28 days old (18.51, 95% CI: 12.70-26.97). Significant heterogeneity was observed in the initial analyses of stroke incidence estimates, and geographical region, cohort age upper limit, length of study, study quality, and study design could not explain this. The incidence rate of childhood stroke appeared remained relatively stable over time. Our review provides estimates of global stroke incidence, including stroke subtypes, in children. It demonstrates a particularly high stroke incidence in neonates.

BackgroundPediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area.ObjectiveThis study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families.MethodsThis was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged.ResultsA total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors.ConclusionsWe found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.

Pediatric stroke is a debilitating disease. There are several risk factors predisposing children to this life-threatening disease. Although, published literature estimates a relatively high incidence of pediatric stroke, treatment guidelines on intravenous tissue plasminogen activator and endovascular thrombectomy utilization remain a dilemma. There is a lack of large population-based studies and clinical trials evaluating the efficacy and safety outcomes associated with these treatments in this unique population. We sought to determine the prevalence of risk factors, concurrent utilization of intravenous tissue plasminogen activator and endovascular thrombectomy, and associated outcomes in pediatric stroke hospitalizations. We performed a retrospective analysis of the Nationwide Inpatient Sample data (2003-2014) in pediatric (1-21 years of age) acute ischemic stroke hospitalizations using ICD-9-CM codes. The multivariable survey logistic regression model was weighted to account for sampling strategy, evaluate predictors of hemorrhagic conversion, and treatment outcomes (mortality, morbidity, and discharge disposition) amongst pediatric stroke hospitalizations. In this analysis, 9109 patients between 1 and 21 years of age were admitted during 2003-2014 for acute ischemic stroke. Of these 9109 patients, 119 (1.30%) received endovascular thrombectomy alone, 256 (2.82%) intravenous recombinant tissue plasminogen activator, and 69 (0.75%) both endovascular thrombectomy and intravenous recombinant tissue plasminogen activator. We found overall high prevalence of conditions like epilepsy (19.59%), atrial septal defect (11.76%), sickle cell disease (8.63%), and moyamoya disease (5.41%) in pediatric acute ischemic stroke patients. Unadjusted analysis showed high prevalence of all-cause in-hospital mortality in combined endovascular thrombectomy and intravenous recombinant tissue plasminogen activator utilization group, and higher prevalence of hemorrhagic conversion and morbidity in endovascular thrombectomy utilization group compared to other groups (p < 0.0001). Multivariate adjusted analysis showed that children with endovascular thrombectomy utilization (aOR: 19.19; 95% CI: 2.50-147.29, p = 0.005), intravenous recombinant tissue plasminogen activator utilization (aOR: 8.85; 95% CI: 1.92-40.76, p = 0.005), and both (endovascular thrombectomy and intravenous recombinant tissue plasminogen activator) utilization (aOR: 7.55; 95% CI: 1.16-49.31, p = 0.035) had higher odds of hemorrhagic conversion compared to no-treatment group. We found various risk factors associated with pediatric stroke. The early identification can be useful to formulate preventive strategies and influence the incidence of pediatric stroke. Our study results showed that use of intravenous recombinant tissue plasminogen activator and endovascular thrombectomy increase risk of mortality and hemorrhagic conversion, but we suggest to have more clinical studies to evaluate the idea candidates for utilization of intravenous recombinant tissue plasminogen activator and endovascular thrombectomy based on risk: benefit ratio.

The impact of age-at-stroke on outcome following pediatric arterial ischemic stroke remains controversial. We studied the interaction of age-at-stroke and infarct location and extent with long-term neurological outcomes. We conducted a longitudinal prospective outcome study of children with acute pediatric arterial ischemic stroke diagnosed from 1996 to 2016 at the Hospital for Sick Children, Toronto, Canada. Pediatric Stroke Outcome Measure scores were dichotomized as normal or abnormal (ie, mild, moderate, or severe). Outcomes were analyzed by age-at-stroke (newborn: birth to 28 days; early childhood: 29 days to 5 years; middle/late childhood: >5-18 years), and infarct location, based on each of the following: model 1: circulation (anterior/posterior); model 2: cortical versus subcortical involvement; and model 3: specific arterial territory, including infarct extent (small [<50% arterial territory] or large [≥50%]). Univariable and multivariable logistic regression models were fitted. Among 285 children, the outcome at median 6.1 years was 43.5% abnormal. Controlling for infarct location, increasing age-at-stroke was associated with increasing abnormal outcome. Model 1 demonstrated that, compared with neonates, abnormal outcomes were increased in early childhood (adjusted odds ratio [aOR], 2.91 [95% CI, 1.24-7.05]) and more so in middle/late childhood (aOR, 4.46 [95% CI, 1.71-12.13]). Outcomes were worse for combined locations, including anterior+posterior (model 1: aOR, 15.4 [95% CI, 4.49-64.63]) and cortical+subcortical (model 2: aOR, 10.7 [95% CI, 3.88-32.74]). Abnormal outcomes were also increased for anterior circulation (model 1: aOR, 14.91 [95% CI, 5.29-54.21]) and subcortical locations (model 2: aOR, 4.36 [95% CI, 1.37-14.95]). Among individual arterial territories, outcomes were best for superior division middle cerebral artery (100% normal) and worst for lateral lenticulostriate artery infarcts (47.4% abnormal; model 3: aOR, 14.2 [95% CI, 3.5-67.6]). Among survivors of pediatric stroke, abnormal long-term neurological outcome is increased with increasing age-at-stroke, supporting enhanced plasticity after focal injury to the newborn brain compared with older pediatric ages.

P01-328 - Health-related quality of life in children and adolescents with stroke, self-report and parent/proxy report: Cross sectional investigation

Limited data are available on health-related quality of life (HR-QoL) in pediatric stroke survivors. The aim of the present study was to assess HR-QoL by self-assessment and parent/proxy-assessment in children and adolescents who survived a first stroke episode. We investigated HR-QoL in pediatric stroke survivors (71 preschool children [G1] and 62 school children/adolescents [G2]) and in 169 healthy controls. HR-QoL was assessed in patients and parents/proxies with the generic KINDL-R questionnaire exploring overall well-being and 6 well-being subdimensions (physical, psychological, self-esteem, family-related, friend-related, and school-related). In pediatric stroke survivors the neurological long-term outcome was measured with the standardized Pediatric Stroke Outcome Measure. Of stroke survivors, 65% exhibited at least 1 neurologic disability. Pediatric stroke survivors reported lower overall well-being compared with healthy controls. In G2 stroke patients, friend-related well-being respectively emotional well-being was significantly reduced compared with healthy controls (73.0 vs 85.0 points; p < 0.001 respectively 80.2 vs 84.5 points; p = 0.049). Parents/proxies of both stroke survivors rated the overall well-being and all subdimensions (except family-related and school-related well-being in G1 and G2 stroke survivors and physical functioning in G2 stroke survivors) lower compared with parents/proxies of healthy children/adolescents. Overall well-being was significantly reduced in children with moderate/severe neurological deficits compared with normal/mildly affected patients (75.5 vs 83.3 points, p = 0.01). Neonatal stroke survivors reported a significantly better neurological long-term outcome compared to childhood stroke survivors (82.0 vs 75.0 points; p = 0.005). Pediatric stroke survivors compared with healthy controls are strongly affected regarding their overall well-being and older children/adolescents regarding their well-being with peers.

Thrombophilia refers to a systemic predisposition to thrombosis, including stroke. Thrombophilia may be genetic (eg, factor V Leiden) or acquired (eg, antiphospholipid antibodies). Approximately 60% of thrombosis risk is attributable to genetic factors.1 Thrombosis is a disease for which there is a relatively well-defined management strategy in adults but less so in children. Thrombophilia is not a disease but a susceptibility to thrombosis, and its management strategy is less well defined in adults and not at all defined in children. Currently, the role of thrombophilia in pediatric stroke is poorly characterized. Article see p 1838 The extensive published literature on stroke in adult patients cannot be assumed to apply to children because common underlying mechanisms of adult stroke, such as atherosclerosis, hypertension, smoking, atrial fibrillation, and diabetes mellitus, are infrequently involved in pediatric stroke. Known underlying mechanisms of pediatric stroke include perinatal placental thromboembolic events through a physiologically patent foramen ovale, congenital heart disease, sickle cell disease, arterial dissection, trauma, infection, inflammation, immobilization, dehydration, metabolic syndromes, moyamoya, and vasculitis. An increasing number of large pediatric centers now have dedicated multidisciplinary stroke services, which include neurology, hematology, neuroradiology, interventional radiology, neurosurgery, and physical, occupational, and speech therapists. Stroke as a diagnosis should be restricted to patients with cerebral infarction (see Figure, top). Multiple additional conditions with predisposition to stroke or cerebral vasculopathy may also be seen by these multidisciplinary groups, including cerebral sinovenous thrombosis (CSVT) (see Figure, bottom), moyamoya, vasculitis, transient ischemic attacks, complex migraine, and nontraumatic intracranial hemorrhage. Figure. AIS (top) and CSVT (bottom). Top left, Magnetic resonance angiogram. Top right, Axial T2 magnetic resonance image. Bottom left, Sagittal T1 magnetic resonance image. Bottom right, Time-of-flight magnetic resonance venography. Arrows highlight abnormalities. The incidence of pediatric arterial ischemic stroke (AIS) …

Introduction: Neurological outcomes in pediatric stroke survivors have been described in observational studies. The Pediatric Stroke Outcome Measures (PSOM) was the first tool validated in children to describe outcomes specifically in stroke (Kitchen et al, 2012). Patients diagnosed with a perinatal stroke comprised 24% of this cohort, while the remainder of patients had suffered from a childhood stroke. Most patients (~ 65%) had no or mild neurological deficits after 5 years of follow-up, represented with a total PSOM score of 0-1. We examined whether perinatal stroke patients would have similar trajectories to the outcomes previously described in pediatric stroke that occurred beyond the perinatal period. Methods: We conducted a retrospective review of our pediatric stroke database at Massachusetts General Hospital. Perinatal stroke survivors were identified, and data extracted from longitudinal follow-up clinic visits. PSOM scores were acquired at: discharge, visits between 2-4 years, 5-7 years, and beyond 7 years. Results: Patients who had endured a perinatal stroke with subsequent PSOM measures recorded were identified (N= 78). Neuroimaging was obtained in the neonatal period (n = 50) or at initial clinical presentation (n = 28; presumed perinatal stroke). Preliminary analyses show that perinatal stroke patients trended towards having increased PSOM scores over extended follow-up beyond 7 years from the index clinical encounter. Discussion: Interval monitoring will unmask deficits throughout development for perinatal stroke patients and can trend towards accrual of further neurological disability. This is in contrast with prior cohorts of childhood stroke where most patients endured stroke beyond the perinatal period and had total PSOM scores of 0-1 beyond 5 years of follow up. Further analyses are underway to establish effect of stroke mechanism, size, and laterality. Separate analyses to map lesion topography to structural and functional network disruptions that occur after perinatal stroke will be performed. Understanding the relationship between these disruptions and functional outcomes will aid in deficit prediction and trajectory modelling, to guide individualized interventions for the youngest of stroke survivors.

Pediatric stroke among Hong Kong Chinese subjects.

Stroke in children occurs across different phases of brain development. Age at onset may affect outcome and health-related quality of life (HRQL). We evaluated the influence of age at stroke onset on the long-term neurological outcomes and HRQL of pediatric stroke survivors. Children with ischemic stroke were recruited into three groups according to their age at onset of stroke (presumed perinatal, neonatal, and childhood). Neurological outcomes were assessed using the Pediatric Stroke Recovery and Recurrence Questionnaire. HRQL was evaluated using proxy report versions (2-18y) of the Pediatric Quality of Life Inventory (PedsQL 4.0). A χ(2) /Fisher's exact test and multivariable logistic regression analysis was performed for the neurological outcomes. HRQL scores from the different age groups were compared using linear regression. Ninety participants (presumed perinatal stroke, n=31; neonatal stroke, n=36; childhood stroke, n=23) were enrolled. Median age at the onset of stroke was 0.5days and 3.7years in neonatal and childhood participants respectively. Of the three groups, participants with presumed perinatal stroke demonstrated the worst global (p<0.002) and motor (p<0.001) outcomes and the lowest level of independence in daily activities (p<0.001). Parents reported the best global outcome and overall HRQL (p=0.007) after neonatal stroke. The age at stroke onset has important implications regarding long-term clinical outcomes and HRQL for survivors. Individuals with presumed perinatal stroke should be considered at high-risk for poor outcomes.

BackgroundA coordinated stroke rehabilitation care team is considered optimal for supporting stroke survivors from diagnosis to recovery. Despite this recognition, many stroke survivors cannot access essential rehabilitation services. Furthermore, there is a lack of understanding of stroke patients’ and their caregivers’ rehabilitation needs and wishes. We sought to gain insight into healthcare and social structures from the perspective of patients and caregivers that can better support long-term stroke recovery.MethodsWe conducted individual interviews with 24 participants comprised of stroke survivors, spousal caregivers, stroke support group coordinators, and speech pathologist. Participants were recruited through three stroke survivor support groups. An empowerment lens was integrated into data analysis and data interpretation.ResultsTwo dominant themes captured participants’ experiences through stroke survivors’ trajectory of care. 1) Experiences of managing stroke. This theme identified stroke survivors and spousal caregivers’ experiences with stroke recovery, rehabilitation, and fulfilling unmet needs. 2) Resources of support. This theme described the social and financial support structures drawn upon to assist with stroke rehabilitation.ConclusionsThe study highlighted a lack of teamwork between stroke survivors, spousal caregivers, and health professionals. This fragmented care was compounded by inequities in rehabilitation programs and health services resulting in what appeared to be a disempowering rehabilitation process. Although stroke recovery groups were a significant source of support for stroke survivors and spousal caregivers, participants perceived they were overlooked, by stroke recovery healthcare providers, as a site for stroke recovery healthcare services. An empowerment approach to stroke rehabilitation involves collaboration between stroke survivors, caregivers, healthcare providers, health services, and existing community stroke support structures. Framing stroke based care through an empowerment lens may serve to address stroke rehabilitation inadequacies and inequities.

Objectives: 1. To estimate sex- and race-specific incidence of pediatric stroke by age group 2. To describe trends in pediatric stroke incidence in New York(NY) from 2006 to 2016 Methods: International Classification of Disease codes were used to retrospectively to identify all acute ischemic stroke (AIS), intracerebral hemorrhage (ICH), subarachnoid hemorrhage (SAH), and cerebral venous thrombosis (CVT) admissions in pediatric patients (0-19 years old [yo]) in the 2006-2016 NY State Inpatients Database (SID; total N=4,083). Incident counts were combined with annual US Census data to compute age- and sex-specific incidence. Joinpoint regression was used to evaluate trends in incidence over time. Results: Across the study period, 52% of all pediatric strokes were AIS, 23% ICH, 11% SAH, and 14% CVT. Total stroke incidence/100,000 population was 47.8 and the age-standardized incidence in &gt;=1yo was 4.8. Incidence differed by age (1-4yo: 4.4, 5-9yo: 3.6, 10-14yo: 4.5, and 15-19yo: 6.7), but not by sex. Age-standardized incidence of strokes in &gt;=1yo also differed by race (Blacks 5.9, Whites 4.0, Hispanics 3.3, Asians/Pacific Islanders 3.1). While there was no change in overall stroke, AIS, or SAH incidence, ICH (annualized percentage change [APC] 4.3%, 95%CI 1.7-6.9) and CVT (APC 4.1, 95%CI 1.22-6.25%) increased over time. When stratified by age, overall stroke incidence increased over time in 15-19 yo (APC 1.3%, 95%CI 0.27-2.35, p=0.019), but not in other age groups. Conclusion: We observed increasing incidence in pediatric ICH, CVT, and overall stroke in 15-19 yo in the state of NY. Pediatric stroke incidence in NY is disproportionately higher in blacks compared to other races. Further investigation is warranted to determine the association of these changes with risk factors, lifestyle and systems of care.