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Abstract

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information

Aim

The International Classification of Functioning Disability and Health, Child-Youth version (ICF-CY) provides a framework for describing and evaluating health, intervention outcomes, and needs assessment. It can, however, also serve as a system for classifying the focus of outcome studies and identification of gaps in current knowledge.

Method

The paediatric arterial ischaemic stroke (AIS) population was targeted. Multiple databases were systematically searched for AIS outcome studies focussing on functioning or disability. Findings were rated using the ICF-CY framework.

Results

Twenty-eight studies were identified. Most were cross-sectional and age range at assessment varied widely. Sixty-seven different standardized measures were used, predominantly evaluating body functions. The most common domains of activity and participation reported were learning and applying knowledge, general tasks and demands, and self-care skills. Health-related quality of life was measured in nine papers. Environmental factors were rarely evaluated.

Interpretation

AIS outcome studies addressing the relationship between body structures and functions (e.g. brain lesion characteristics, neurological examination findings) and activities, participation, and quality of life have emerged in recent years. Comparison of findings across studies is complicated by design and tool selection. The relationship between components of activity limitation and participation restriction is rarely explored.

Abbreviations
AIS

Arterial ischaemic stroke

HRQOL

Health-related quality of life

ICF-CY

International Classification of Functioning, Disability and Health, Child-Youth version

PSOM

Pediatric Stroke Outcome Measure

QOL

Quality of life

After a stroke, children face the prospect of lifelong disability and the condition carries a risk of recurrence in approximately 20% of cases.[1-3] The emergence of medical research in this field has thus far concentrated on diagnosis, aetiology, and risk factors. In children arterial ischaemic stroke (AIS) is an important cause of long-term morbidity and is reported to be more common than paediatric haemorrhagic stroke, although estimates vary.[1, 4] The biopsychosocial model of health forms the conceptual foundation for what is now the most widely adopted framework for the definition and measurement of health and disability – the World Health Organization's International Classification of Functioning, Disability and Health (ICF).[5] The Child-Youth version (ICF-CY)[6] was published in 2007 to include developmental considerations relevant to this age group. The ICF aims to provide a standard language for international and multidisciplinary use, and incorporates domains from the body and individual and societal perspectives that may have independent, confounding, moderating, or mediating effects on the health of an individual.[7] The ICF-CY allows the relationship among individual, social, and environmental factors to be examined. The terms ‘functioning’ and ‘disability’ refer to the dynamic relationship between the individual and contextual factors. Quality of life (QOL), as a specific health domain, is often addressed separately from the ICF framework. Health-related quality of life (HRQOL) is increasingly used as an endpoint in clinical outcomes research, and is assessed through child self-report and carer-report.[8]

Evaluation of each dimension of the ICF for an individual provides a representation of his or her experience of living with a disability. Impairments of body structures and functions (e.g. brain injury, muscle weakness, vision impairment) are not adequate proxies for disability. Furthermore, evaluation of impairments without the contextual factors that can either facilitate or hinder participation in society, restricts understanding of what a person actually does in their daily life. There has been wide variation in the degree to which impairments of body structures have been found to correlate with activity limitation and participation restrictions.[9-11] In reviews of paediatric outcome measures, both Jette and Haley,[12] and Msall,[13] suggest that evaluation of abilities in daily life activities, adaptive skills (i.e. activities and participation), and quality of life are indicated to assess outcome and target intervention that is meaningful to children and families.

Children who have had a stroke are a heterogeneous population, presenting health care professionals with challenges when selecting outcome measures and delivering interventions[14] Identification of factors that may influence recovery and their relative importance is limited and has had an impact on the ability to develop the evidence base for interventions. In keeping with the move towards goal attainment rehabilitation models, interventions for children with disabilities are increasingly participation-focussed. A child or young person's participation in daily life situations depends on a combination of body functions, the features of the tasks, and the social, physical, and attitudinal environment (including fears and assumptions that can affect interaction).[15] A number of factors have been identified as influencing functioning after non-progressive brain injury and linking behaviour, the environment, and brain-related changes, including pre-injury abilities and circumstance (including e.g. socio-economic status), characteristics of the brain injury and resulting impairments, personal reactions to the injury and recovery, and environmental resources (e.g. rehabilitation, social support).[16-18]

The paediatric stroke literature has historically focused on epidemiology, aetiology, diagnosis, identification of risk factors for first and recurrent stroke, and pathological findings (i.e. magnetic resonance imaging, blood markers, and angiography). Clinical findings often have been limited to neurological impairments and outcomes categorized crudely as ‘good’ or ‘poor’.[19-21] This may be caused, in part, by difficulties in finding appropriate outcome measures, but also by the retrospective nature of the majority of studies. In acute health care for children with acquired brain injuries, impairments of body structures and functions are often the primary concern of health professionals. Once the condition has stabilized, however, the focus of families, children, and allied health professionals turns to the abilities required in everyday activities including home, school, and leisure activities, and quality of life. These health domains are frequently the concern of families with regard to the long-term recovery of children with AIS[22] and studies are now encompassing performance in daily life environments. The purpose of this review was to identify the literature describing the outcome of AIS in children beyond impairments of body structures and functions, and using the ICF framework to classify the domains of disability and functioning addressed and where gaps in the knowledge remain for further research.

Method

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information

Searches were performed in Medline, AMED, Embase, Cinahl, PsycInfo, Web of Science, PubMed, and the Cochrane Library of Systematic Reviews databases (1995–Dec 2012), and reference lists were searched. The search strategy comprised the following Medical Subject Headings (MeSH) terms or key words (1) ‘stroke’ (MeSH) OR ‘brain ischemia’ (MeSH) OR ‘cerebrovascular disorders’ (MeSH) OR ‘brain infarction’ (MeSH) OR ‘cerebrovascular accidents’ or cerebral ischemia’; AND (2) ‘follow-up studies’ (MeSH) OR ‘prognosis’ (MeSH) OR ‘prospective studies’ (MeSH) OR ‘cohort studies’ (MeSH) OR ‘longitudinal studies’ (MeSH) OR ‘retrospective studies’ (MeSH) OR ‘epidemiologic methods’ OR ‘health status’ OR ‘comorbidity’ (MeSH) OR ‘qualitative research’ (MeSH) OR ‘quality of life’ OR ‘outcome assessment (health care)’ OR ‘activities of daily living’ OR ‘disabled persons’ OR ‘ability level’ OR ‘adaptive testing’ OR ‘recovery (disorders)’ OR ‘disabilities’ OR ‘disability’ OR ‘learning disabilities’ OR ‘multiple disabilities’ OR ‘activity level’ OR ‘self-care skills’ OR ‘cognitive impairment’ OR ‘intelligence’ OR ‘behavior’ OR ‘perception’ OR ‘rehabilitation’ OR ‘adaptive behavior’ OR ‘motor development’ OR ‘motor processes’ OR ‘physical mobility’ OR ‘disability evaluation’ OR ‘clinical assessment scales’; (3) AND limited to English language AND all child (0–18y).

Over 1600 papers were identified. Titles and abstracts were inspected, and papers reviewed in detail when the focus of the study was on the outcome of AIS in children or young people, where the date of stroke diagnosis was reported, the stroke confirmed radiologically, and the outcome described beyond neurological impairment, death, seizures, or hemiparesis. Papers excluded were those with a focus on preterm infants, presumed perinatal infarcts or haemorrhagic stroke, and those not published in English. Papers were also excluded if the outcome of children with primarily haemorrhagic stroke was not described separately from those children with AIS, or preterm infants not described separately from term infants. Review papers, and those describing six or fewer children were also excluded.

Twenty-eight papers met the inclusion criteria and were included in the review, 10 published between 2010 and 2012. The ICF-CY classification codes are detailed in Table 1. Table 2 summarizes the study populations according to diagnosis, numbers, age at diagnosis and assessment, measures used, and domains of health assessed according to ICF classification criteria.

Table 1. ICF-CY classification codes
Level 1 classificationLevel 2 classification
  1. ICF-CY, International Classification of Functioning, Disability and Health, Child-Youth version.

b Body Functionsb1 mental functions
b2 sensory functions and pain
b3 voice and speech functions
b4 functions of the cardiovascular, haematological, immunological, and respiratory systems
b5 functions of the digestive, metabolic, and endocrine systems
b6 genitourinary and reproductive functions
b7 neuromusculoskeletal and movement-related functions
b8 functions of the skin and related structures
s Body Structuress1 structures of the nervous system
s2 the eye, ear, and related structures
s3 structures involved in voice and speech
s4 structures of the cardiovascular, immunological, and respiratory systems
s5 structures related to the digestive, metabolic, and endocrine systems
s6 structures related to the genitourinary and reproductive systems
s7 structures related to movement
s8 skin and related structures
d Activities and Participationd1 learning and applying knowledge
d2 general tasks and demands
d3 communication
d4 mobility
d5 self-care
d6 domestic life
d7 interpersonal interactions and relationships
d8 major life areas
d9 community, social, and civic life
e Environmental Factorse1 products and technology
e2 natural environment and human-made changes to environment
e3 support and relationships
e4 attitudes
e5 services, systems, and policies
Table 2. Functional arterial ischaemic stroke outcome publications
First author and yearPopulation n DesignAge at diagnosis, mean (range) where availableTime since strokeLesion locationOutcome measures usedb Body Functionss Body Structuresd Activities and Participatione Environmental FactorsQOL
  1. APT, Annett Peg-moving task; ASK, Activity Scales for Kids; BRIEF, Behaviour Rating Inventory of Executive Function; BSID-II, Bayley Scales of Infant and Toddler Development 2nd edition; Calif VL Test, California Verbal Learning Test; CELF-R Clinical Evaluation of Language Fundamentals- Revised; CHP-QOL, Centre for Health Promotion's Quality of Life Profile; CHQ, Child Health Questionnaire; CFSEI-III, Culture-Free Self-Esteem Inventory 3rd edition; CIS, infancy/childhood/adolescent onset ischaemic stroke; Conner's Scales, Conner's Parents Rating Scales; COPM, Canadian Occupational Performance Measure; CSVT, cerebral sino-venous thrombosis; CVLT, California Verbal Learning Test; Denver II, Developmental Screening Tests II; D-KEFS TMT, Delis-Kaplan Executive Function System Trail Making Test; GHQ-12, General Health Questionnaire-12; GMFCS, Gross Motor Functional Classification System; HS, haemorrhagic stroke; K-ABC, Kaufman Assessment Battery for Children; M-ABC- Movement Assessment battery for children; mRS, Modified Rankin Scale; MDFS, Multidimensional Fatigue Scale; NS-SEC, National Statistics Socio-economic Classification; NIS, neonatal (or presumed perinatal) ischaemic stroke; PEDI, Pediatric Evaluation of Disability Inventory; PedsQL, Pediatric Quality of Life 4.0; FIM, Family Impact Module; PEGS, The Perceived Efficacy and Goal Setting System; PSOM, Pediatric Stroke Outcome Measure; Raven Matrices, Raven's Coloured and Standard Progressive Matrices; Rey-Figure, Rey-Osterrieth Figure; SDQ, Strengths and Difficulties Questionnaire; SDMT, Symbol Digit Modalities Test; S-E Index Canada, 1981 Socio-Economic Index for Occupations in Canada; SF36, Short Form 36; SWLS, Diener Satisfaction with Life Scale; TAP, Test of Attentional Performance; TAPQOL, Netherlands Organisation for Applied Scientific Research Academic Medical Center Leiden; TACQOL-PF TNO-AZL Quality of Life Questionnaire Parents (age 6–15y); TACQOL-CF TNO-AZL, Quality of Life Questionnaire Child Form (age 8–15y); TAAQOL TNO-AZL, Quality of Life Questionnaire Adolescents (age 16y and older); TEA-Ch, Test of Everyday Attention for Children; TMT, The Trail Making Test; VABS, Vineland Adaptive Behaviour Scales; WAIS, Wechsler Adult Intelligence Scale; WAIS-R, Wechsler Adult Intelligence Scales; WPPSI–R Wechsler Preschool and Primary Scale of Intelligence; WJ-R, Woodcock Johnson Psychoeducational Battery Revised; WOLD, Wechsler Objective Language Dimension. The purpose of each outcome measure is listed in Appendix S1, online supporting information.

Barkat-Masih 2011[50]NIS and HS19Cross-sectional. Child questionnaireNeonate or presumed perinatalMedian age at assessment 80mo (range 41–258mo)Vascular territoryASK

b1

b7

s1

d1-8

XX
Block 1999[30]CIS11 (and 11 controls)Cross-sectional. Direct testingRange 6mo–15yRange 8–23y at testing; minimum 2.5y after diagnosisSide lesion; size lesion (S/M/L); cortical/subcortical/both1981 S-E Index Canada; WISC or WAIS – Vocab and Block Design Subtests; SDMT; The Trail Making Test; CVLT; Rivermead Behavioural Memory Test; Revised Token Test; Reporter's Test

b1

s1

d1

d3

XX
Bulder 2011[52]CIS40Cross-sectional; direct testing and parent report5.6y (0.3–15.9y)Mean 3.1y (range 0.6–13.1y)Laterality, infra/supra tentorialPSOM; mRS; rating scale of type of school attended; PedsQL; visual analogue scale of general health (parent reported)

b1-3

b7

s1

s4-5

d2

d4-5

e2-3

Christerson 2010[53]CIS; HS; CSVT46Cross-sectional. Direct testing and parent reportRange 28dMedian 4.2y (range 1.6–8.6y). Median age at assessment 17.5y (range 5.5–26.1y)Described in companion paper by authors 2010). Regions (cortical, subcortical, brain stem, cerebellum)4-point neurological outcome scale; school performance 4-point scale (author devised); CHQ; SF-36; 5-point scale of difficulty of activity and participation section of ICF-CY (author devised; parent reported)

b1

b7

s1

d1-8

e3

e5

Cnossen 2010[49]CIS76Prospective case series. Direct testing2y 6mo (1mo–17y 2mo)Mean 2y 4mo (7mo–10y 6mo)Site, extent, vasc territoriesmRS; Neuro exam; DSM-IV diagnostic criteria; TAPQOL; TACQOL-PF; TACQOL-CF; TAAQOL

b1

s1

d1

e3

e5

De Schryver 2000[37]CIS37Cross-sectional. Retrospective chart review, parent interview ± direct testing4.6y (3mo–14y)Median 7y (3mo–20y) since stroke; age at follow- up median 11y (3y–25y)Vasc territories; location (hemisphere or brain-stem/cerebellum)Neurological exam; Raven Matrices; WISC-R (Dutch version) or WAIS vocabulary subtests; Card sorting task for children (locally devised behaviour measure); Denver II; mRS; HRQOL questionnaire (Aaronson)

b1-4

b7

s1

d1

d5

d7-8

e3-5

Delsing 2001[55]CIS31Retrospective chart review; parent questionnaire4.3y (2mo–14.3y)Mean 3.5y (1.6–4.9y)Vasc territories; location (cortical/subcortical/posterior circulationNeuro exam; Author devised parent questionnaire rating school and daily living impairment; mRS

b1-4

b7

s1

d2

d5

e5

X
Everts 2008[28]CIS21Cross-sectional; direct testing7y 3mo (1mo–17y 6mo)4y 9mo (14d–14y)Location, size grouped 1-3WISC III; WAIS-R; K-ABC; TAP, Rey-Figure; German version of the CVLT; Largo's Motor Scales; Conner's Scales; KIDSCREEN

b1

b3-4

b7

s1

d1

e5

Friefeld 2004[54]NIS; CIS; CSVT100Cross-sectional. Prospective direct testingNeonate–18y4y 6mo (3mo–1y); Mean age at follow-up 8y 6mo (2–18y)Not statedPSOM; PedsQL parent proxy report (2–18y) and child self-report (5–18y); Hollingshead ranking

b1

b7

s1

XX
Friefeld 2011[44]NIS; CIS; CSVT112Cross-sectional. Parent questionnaire; retrospective case note reviewNeonate–18yRange 1–6+y age at follow-up mean 8y 1mo CHP-QOL; PSOM; BSID-II Cognitive subscale; WPPSI-R; WISC-III; VABS; Hollingshead ranking

b1

s1-2

s7

d1-7

e3

Galvin 2010[43]NIS; CIS; HS26Cross-sectional. Prospective parent/child interviewNot statedMean 17mo (3–66mo); mean age at follow-up 109mo (7–194mo)Not statedCOPM or PEGS (caregiver or child completed)X

s1

XX
Galvin 2011[24]CIS (primarily)18Cross-sectional. Parent interview.Mean 7.86y (SD 4.3)Mean 2.8y (SD 3.1)Not statedPEDIXX

d2-7

e2-3

X
Ganesan 2000[39]CIS90Cross-sectional. Direct testing; parent and therapist questionnaireMedian 5y (3mo–15y)Median 3y (3mo–13y)Vasc territories, location – cortical involvementAuthor devised outcome questionnaire; BSID-II; CELF-R; CELF-Preschool; WISC-III; WIPPSI-R; WAIS

b1-2

b4

b8

s1

d1-7

e3

X
Gold 2008[29]Sickle cell disease ± CIS65 (25 CIS, 40 no stroke)Retrospective chart reviewNot reportedMean age at follow-up 13y (7–17y)Nr of infarcts; lobe/regionWISC-R or WISC-III; WJ-R; Purdue Pegboard Test; Benton Tactile Perception Test

b1

s1

d1

XX
Golomb 2003[41]NIS and CSVT88Retrospective chart review, prospective carer report0–28d>12mo (range not stated)Vasc territories, side of infarction (L/R/bilateral)Medical records notation and carer report of time of child's first steps; carer report of normality of gait

b7

s1

d4

XX
Gordon 2002[22]CIS17Cross-sectional. Parent/child interviewMedian 4y (14mo–13y 6mo)Median 2y 5mo (range 10mo–8.5y)Vasc territories, location – cortical involvementPSOM; author devised activity limitation measure; CHQ; SF36

b1-3

b7

s1

d1-7

e3

Guzzetta 2010[40]NIS13 (and 13 controls)Prospective, direct testing0–29dApprox 12wks and 18moVasc territoriesTouwen's neurological examination; Prechtl's Assessment of General Movements

b7

s1

XXX
Hetherington 2005[26]CIS and CSVT72Prospective, direct testingCIS 4.5y (SD 5.4); CSVT 3.7y (SD 5.8)CIS mean 0.5y (SD 5.4y); CSVT 0.5y (SD 0.2)Lesion location – cortical involvementBSID-II; Hollings head ranking; WPPSI-R; WISC-III; WAIS-R

b1

s1

X

e3

X
Hurvitz 1999[38]CIS and HS50Retrospective chart review. Carer/participant telephone survey8y (7mo–17y 8mo)70mo (10–174mo)Chart review – functional abilities rated as dependent/independent/too young; Tel interview carers– dependent/independent in daily living skills. Language based on content of VABSX

s1

d5-6

d8

e3

X
Hurvitz 2004[47]CIS and HS29Retrospective; cross-sectional; case note r/v; telephone survey7y (8mo–17.7y)11.9y (6.6–20.8y). Mean age at follow-up 19.3y (9–36.5y)VABS; Diener Satisfaction with Life Scale (participant); parent/young adult interview re: home/school/work

b4

b6-7

s1

d2

d5-9

e2-3

e5

X
Kim 2009[51]CIS and HS44Retrospective; case note review, multiple time points8.7y (8mo–17y)Range 34–352dHemisphereModified Brunnstrom Scale; modified GMFCS; author-devised scales of bladder control, oral-motor control, speech and language abilities, self care and schooling

b1-7

s1

s7

d4-5

e2

X
McLinden 2007[31]NIS and CSVT27Prospective. Direct testingRange 0–28d12mo (n=24) and 24mo (n=21), both time points n=18Nr of infarctions, lesion lateralityPSOM; BSID-II

b1

b7

s1

d4

XX
Mercuri 2004[42]NIS22Prospective; direct testingRange 3–12dRange 5.6–6.6y (n=21); 9y (n=1)Vasc territories; hemispheres; cortical and subcortical structuresTouwen's Neurological Examination; M-ABC; WPSSI-R

b7

s1

d4

XX
O'Keeffe 2012[48]CIS49Cross-sectional; direct testing and parent/teacher report5.08y (4mo–15.66y)Mean 6y (SD 3.41); Age at follow-up range 6–18.4yHemispheresPedsQL (incl FIM); CFSEI-III; NS-SEC;GHQ-12; WAIS; WIAT-II; WOLD; TEA-Ch; APT; D-KEFS; TMT; BRIEF; SDQ; Handedness Test; MDFS

b1

b7

s1

d1-5

d7

e5

Ricci 2008[32]NIS28Prospective cohort; direct testing0–7dAge at follow-up median 5.75y (5.33–10.33y)Vasc territories; lobes; cortical and subcortical structuresWPSSI; WISC-III; neuromotor clinical exam

b1-3

b7

s1

d1

d4

XX
Steinlin 2004[45]CIS16Retrospective chart review, questionnaire, clinical exam, structured interviewMean 7.3y (6mo–16.2y)Mean 7y (range 1–15y)Vasc territories; cortical and subcortical structuresAuthor devised parent questionnaire rating daily living, school, social and speech difficulties; mRS. Neurological symptoms divided into mild/mod/significant loss of function and neuropsychology into mild/mod/severe difficulties based on interview or clinical exam

b1-4

b7

s1

d1-2

d7

d9

e3

e5

X
Westmacott 2009[33]NIS26Longitudinal; prospective; direct testingRange birth–28d2 follow-up time points; mean 4.9y (3y 6mo–5y 11mo) and mean 8.8y (6y 1mo–12y 5mo)Lobes ± basal gangliaPSOM, maternal education level (SES), WPPSI-R or WPPSI-III; WISC-III or WISC-IV

b1-3

b7

s1

X

e2

X
Westmacott 2010[34]NIS and CIS145Cross-sectional; direct testingPerinatal–16y (grouped)Mean 4y 9mo (SD 3y 9mo)Cortical and subcortical structuresWISC III or WISC IV; WPPSI-R or WPPSI-III; PSOM; maternal education level (SES)

b1-3

b7

s1

X

 

e2

X

Results

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information

Of the 28 studies identified, the study populations varied in size from 11 to 145. Seventeen studies focussed on strokes diagnosed beyond the neonatal period, seven focussed solely on the neonatal stroke population, three included neonatal through to adolescent diagnosis, and one did not describe the age at diagnosis. Age at assessment ranged widely and the majority of studies were cross-sectional in design with acute data collected from case note review, and/or a combination of subsequent clinician assessment and parent completed questionnaire (see Table 2). The participants were recruited either from registries (seven studies) or hospital records.

Sixty-six standardized measures were employed (including seven quality of life measures) in addition to author-devised questionnaires. Despite the increasing recognition of the importance of parent narratives in disability research,[23] most studies used an entirely clinician-obtained assessment of the child's capacity upon testing of particular domains of health, often reported crudely as the presence or absence of observed difficulties, for example walking, speaking, understanding instructions. None of the papers had a predominantly qualitative approach to data collection, although parental and child concern interviews were a component of two studies.[22, 24]

Body structures and functions

All studies reported that the study population had a radiologically confirmed cerebral infarction. Classification of the infarction varied from laterality, to vascular territory, number of discrete lesions, lobes and included angiographic findings. The most commonly reported body functions were mental b1; e.g. components of cognition and executive function including memory, attention, processing speed, and intellectual function) and movement-related (b7; e.g. muscle tone, presence of hemiparesis). The most common method of reporting impairments in this domain was in the context of a neurological examination. The Pediatric Stroke Outcome Measure (PSOM)[25] was the most common measure used to identify impairments of body functions.

Of all sub-domains, cognitive functions were most consistently measured using internationally recognized validated measures (e.g. Wechsler Scales or Bayley Scales of Infant and Toddler Development). Mental functions were also the most common domain of outcome to be assessed formally (13 of the 27 studies), particularly intellectual functioning, whether or not they were the focus of the study. There was, however, variation in the cognitive outcomes described, which may be related to differences in sample size and cross-sectional design. Intellectual outcome was described as normal in the 6 months after infancy and childhood onset AIS in a group of 47 children.[26] Performance IQ was described as more often affected than Verbal IQ.[27, 28] Performance IQ was also found to be 1 or more standard deviations lower than population mean in overall IQ in a population of 25 children with AIS and sickle cell disease, at least 7 years after diagnosis.[29] Block et al.,[30] in assessing 11 children with unilateral AIS and 11 age- and sex-matched comparison children at least 2 years after diagnosis, found subtle but persistent processing speed and memory deficits, and overall cognition fell in the low–average range for age.

In comparison, neonatal onset AIS patients have been described as having lower than average psychomotor and cognitive performance at age 2 years,[31] yet in another study as having overall IQ in the normal range upon entry to school.[32] In assessing two time points after diagnosis of neonatal AIS (mean 4.9y then again at mean 8.8y), Westmacott et al. found a significant decline in Full-scale IQ.[33] In a later study this group also found children who had perinatal stroke performed more poorly on cognitive assessment than children older at diagnosis.[34] In contrast, Ballantyne et al.'s study of a perinatal ischaemic stroke population assessed at preschool age and again at school age found no evidence of decline in cognitive function.[35] The presence of seizures was found to lower performance on intellectual and language measures and alter the course of cognitive development. In general, group means for intellectual functioning after stroke appear to be in the low to low–average range, although reporting of mean intellectual outcome scores may mask variation in outcome related to factors such as stroke classification, aetiology, or age at diagnosis or assessment.[26, 28, 36, 37]

Activities and participation

Few studies comment on learning abilities after stroke, i.e. the ability to acquire and apply knowledge and maintain academic progress with peers. Domains of cognitive capacity (e.g. IQ, evaluation of memory, and attentional skills) as they relate to the children's learning abilities and progression within a school environment were in general not explored. In the studies described in this review, communication skills were not reported in detail. Components of expressive and receptive language abilities were described often in the context of sub-tests within extensive neuropsychological testing, or in more global terms in relation to clinical impression in administering the PSOM. Hurvitz et al., in describing the communication component of the Vineland Adaptive Behaviour Scales, reported deficits in 47% of 50 children with either ischaemic or haemorrhagic infarcts, which reflects communication difficulties in the context of daily life activities rather than impairment in expressive and receptive language sub-skills.[38]

Hemiparesis is the most common motor deficit reported, related to the middle cerebral artery territory being the most common vascular territory affected and unilateral stroke being more common than bilateral infarctions. The severity of this motor impairment varies; however, most children with unilateral stroke will gain or regain independent mobility and some have fine motor deficits.[39-42] After unilateral neonatal stroke, most children will have a gait described as normal in the long term by their main carers.[41] Anecdotally, many children will rely on an ankle–foot orthosis for some time during sub-acute rehabilitation, even if not in the long term, in order to ambulate more efficiently. Task-based hand use was not evaluated in any of the papers reviewed, although one study of parental concerns found a high proportion related to bimanual tasks (e.g. dressing, eating).[43]

After AIS, parents of children have reported behavioural concerns.[44] The behavioural sequelae of stroke in children may arise as a direct consequence of the brain injury itself, or from social, physical, cognitive, or environmental factors. Moderate behavioural impairments, as reported by parents were described in two studies of school-aged children with arterial ischaemic stroke,[28, 45] including fatigue, and social, and emotional difficulties. IQ and neurological impairment were found to predict social-emotional and behavioural difficulties.[44] Social and academic difficulties have also been described for children with right-sided basal ganglia lesions.[46]

The majority of studies examining the relationship between age and outcome found that younger age at stroke was associated with worse cognitive and behavioural outcome or self-care dependence,[34, 38, 39, 47] with one study finding those with stroke in mid-childhood had better outcomes than at preschool or adolescent onset.[28] Age at stroke was not associated with health-related quality of life (HR-QOL) in one study,[48] but another study found older age at testing predictive of lower scores.[44] The age range of populations and assessments varied between studies.

Thirteen papers reviewed were found to have measured or attempted to describe adaptive behaviour outcomes in AIS, or AIS combined with haemorrhagic stroke populations.[22, 24, 37-39, 43, 45, 47, 49-53] Adaptive behaviour commonly includes one or more of the following components of activity and participation: mobility, communication, self-care, domestic life, and interactions and relationships. Assessments included classification of age-appropriate abilities based on case note review[51] and parental rating of level of assistance, difficulty, or concerns regarding the children's abilities at home and school in specific activities.[22, 24, 38, 39, 45, 51, 52] The children or young people's ratings were sought in several papers using standard measures.[43, 47, 50] Findings varied widely from describing most children as having age-appropriate independence[37, 38, 45] to good outcome in 40% of cases and poor outcome in 60% of cases.[39] The Vineland Adaptive Behavior Scales were used in a study of 29 children after haemorrhagic and ischemic stroke (diagnosed between 8mo and 17y) and found overall functioning in the moderately low range for age.[47] The Pediatric Evaluation of Disability Inventory has also been found to detect disabilities in mobility, socialising, and self-care, and increased carer dependence in a population of 19 children with predominantly haemorrhagic stroke.[24]

Environment

Socio-economic status (SES) was described in six studies, with two using maternal education as a proxy measure,[33, 34] and others using the Hollingshead ranking[26, 44, 54] or the National Statistics Socio-Economic Classification.[48] In none of these studies was SES found to correlate with target outcome (HRQOL or cognition).

There is very little research examining family functioning, carer burden, and other environmental factors in the AIS population. One study in this review showed lower than expected parental general health in psychological and social domains more than a year after stroke.[22] Education or rehabilitation support has been used in a number of studies as a marker of recovery either overall or in relation to learning disabilities [19, 39, 49, 55] and in costing stroke care.[49, 56, 57]

Quality of life

Outcome in terms of child and/or parent-reported health-related quality of life has been measured in several papers, using different standardized measures.[22, 28, 36, 37, 44, 47-49, 54] All described impaired quality of life, with five finding that more neurologically impaired children had poor quality of life scores.[22, 36, 37, 48, 54] Findings varied depending on whether measures were made by the child themselves or a proxy rater, with children reporting higher quality of life than parents or carers. Friefeld et al. found that cognitive and behavioural impairments and low verbal IQ were associated with poorer socialization and HRQOL, and that school and play were the most affected areas of daily life.[54]

None of the studies included all the domains suggested as affecting brain injury functioning and disability outcomes (i.e. brain lesion characteristics, neurological impairments, SES or family factors, premorbid abilities, and personal responses to injury). All but one study[24] did, however, describe characteristics of the lesion, although this varied (see Table 2). While premorbid abilities were not evaluated in any of the studies, six included components of brain lesion characteristics, neurological impairment, and socio-economic or family factors.[26, 33, 34, 44, 48, 54] Those studies exploring personal responses to the stroke did not include socio-economic or other family factors.[38, 39, 43, 45, 47]

Discussion

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information

More than half of children who survive AIS will experience long-term disabilities, commonly mobility, communication, learning, and social difficulties. Recurrence is also a risk in a proportion of this population.[1] This review of outcome studies focussed on activity and participation, and papers published over a 17-year period. The use of the ICF-CY classification has illustrated the limited number of studies addressing activity, participation, and environmental characteristics. Findings suggest clinical outcome is diverse, yet the relative influence of factors in addition to that of the brain injury itself remains unknown.

The study populations described, often recruited through hospital attendance, may bias towards children with poorer outcome, or those who remain in hospital longer after diagnosis (i.e. older children vs neonates). Long-term systematic follow-up of children is becoming more common, with the advent in recent years of a number of regional and international child stroke registries. It will be important to identify an agreed outcome evaluation strategy across registries to enable analysis of the impact of factors such as age at diagnosis and time since diagnosis, on outcome including activity and participation.

The findings of this review mirror the stroke outcome measures review of Engelmann and Jordan in describing the combined use of both standardized and author-devised measures in child stroke outcome studies.[14] Using the ICF-CY classification, however, it is evident that where standard measures are used these are primarily evaluating capacity in body functions (e.g. direct testing of cognitive skills in clinical context), whereas performance in domains of activity and participation (in the context of the individual's usual daily environment) was reported in the minority of cases using standardized measures. In these domains, more often author devised or modified tools were used or findings limited to anecdotal comments. Only one tool, the PSOM, has been validated for use with the child stroke population. The wide variation in tool selection and tool modification, and inclusion of paediatric and adult measures, potentially compromises the reproducibility and comparison of results across populations. Subtle cognitive, behavioural, and motor impairments may go undetected in the use of tools that are not appropriately sensitive or validated, and yet these impairments may affect daily living independence and school performance.22,33,34,,39,47

In clinical practice, information is required on the nature and timing of support services for this population. Although receipt of rehabilitation services or special educational input has been used as surrogate markers of service needs in several papers,[19, 22, 39, 47] the longitudinal variations in these needs are unknown. The reactions of parents, children, and young people to the stroke and to their recovery are largely unknown, as are their perceptions of their health, social, and education needs and how these change over time. A qualitative approach to stroke outcome studies from a child and family perspective would be valuable in exploring needs and preferences for service provision.

Clinical experience suggests that there is considerable variation in the speed and nature of recovery among children with AIS. The relationship between impairments and activity limitations when described in this review was frequently limited to one time point, with a wide range in time after diagnosis and age at assessment between participants. The impact of AIS may be broad and extend well beyond the individual. Given that children from infancy to adolescence are normally dependent on assistance or supervision to some degree in aspects of daily life, usually provided by family, the subsequent disability and additional demand of a stroke on carers may be substantial. Standard approaches to the evaluation of activities and participation, and environmental facilitators and barriers are required. This review found that learning and applying knowledge, and general tasks and demands were the most commonly reported components of activity and participation, and even these areas were not always evaluated using standardized approaches. Communication, mobility, domestic and community life, socialization, and relationships remain unexplored.

Conclusion

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information

This review highlights the fact that a relatively small proportion of paediatric stroke literature is focused on outcome beyond body structures and functions as classified using the ICF-CY. Knowledge of health and well-being after stroke is, therefore, incomplete. Further, the relationship between impairments in body structures and functions, limitations in activities and participation, and the impact of environmental factors remain to be studied. The small sample sizes and cross-sectional design of a large proportion of the studies affect the ability to examine the interaction between variables known to have an impact on functioning after injury to the developing brain. To address the gaps in knowledge illustrated in this review, multicentre prospective studies using agreed measures are required to provide sufficient power for multivariate analysis. A framework to guide multicentre studies of stroke outcome is presented in Table 3, with example measures.[58-72] Consideration of population characteristics, resources, and attributes of measures is required before selection. Time points for assessment, and extent of assessment would need to be considered and ideally agreed across centres.

Table 3. Suggested framework for prospective longitudinal stroke outcome studies
ICF componentExample measuresaConsiderations
  1. a

    Only brief examples given, not intended as suggestive of the only measures available.

Body structures and functions
Brain lesion characteristics

CASCADE[73] (stroke classification)

Lesion location, total brain volume, white matter integrity

Standard magnetic resonance imaging (MRI) protocol; use of same MRI scanner for repeat imaging; MR angiography findings; aetiology
TimingAge at diagnosis, delay to diagnosis, time since diagnosisLongitudinal evaluation through to adulthood, and specifically from neonatal period through to school entry
Neurological impairmentsPediatric Stroke Outcome Measure[25]Standard measures and set time points. Capture of prior symptom characteristics from parent/young person perspective
Mental functionWechsler Scales (WPPSI-IV, WISC-IV, WAIS-IV)[74]Cognition and emotional health, including depression and anxiety
Activity and participation
Motor function

Bruininks-Oseretsky Test of Motor Proficiency[75]

Assisting Hand Assessment[58]

Both child/young person's perspective and parent/carer;

Usual daily performance as well as capacity on testing;

Longitudinal evaluation using comparable if not same tool;

Capture range and nature of activities undertaken by the children and young people;

Pre-morbid functional abilities, including hand preference

Communication

Clinical Evaluation of Language Fundamentals 4thedn[59]

Clinical Evaluation of Language Fundamentals – Preschool-2[60]

Adaptive behaviour

Vinelands Adaptive Behavior Scales[61]

Canadian Occupational Performance Measure[62]

Pediatric Evaluation of Disability Inventory – computer adaptive tests[63]

Social relationships

Strengths and Difficulties Questionnaire[64]

Child and Adolescent Scale of Participation[65]

Community functioningActivity Scale for Kids[66]
School ParticipationSchool Function Assessment[67]
Environment
Family factors

McMaster Family Assessment Device

Short-Form 36[68]

Depression Anxiety and Stress Scale[69]

Barriers and facilitators;

Impact of child's health condition on family situation, e.g. change in circumstance;

Economic, social, health burden beyond child/young person;

Parent and child coping/adjustment

Socio-Economic FactorsSocial Risk Index[70]
Service ProvisionHealth, Education, Housing, Social Services support – nature, frequency, location
Quality of Life
Health-Related Quality of Life

Child Health Questionnaire[71]

Pediatric Quality of Life Inventory[72]

Parent and child perspective

Prospective data are necessary as a basis for the development of clinical trials in this population, and for closer examination of the brain recovery processes underlying clinically observable changes in health and well-being. At present, there is wide variation in the acute and rehabilitation management of children after AIS. In the adult stroke population, in contrast, health practitioners adopt evidence-based interventions informed by rigorous research.[73-75] AIS as an important source of chronic disability, requires prospective, longitudinal studies of recovery to improve understanding of the predictors of recovery and identification of potentially modifiable factors in influencing outcome.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information

Thanks to Dr Michael Absoud and Professor Vicki Anderson for helpful comments on an earlier draft of this manuscript.

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  3. Method
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  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information
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Supporting Information

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Conclusion
  7. Acknowledgements
  8. References
  9. Supporting Information
FilenameFormatSizeDescription
dmcn12336-sup-0001-AppendixS1.docxWord document16KAppendix S1: Outcome measures used and purpose.

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