Victorian Cerebral Palsy Register Research Articles

Causation in cerebral palsy: Parental beliefs and associated emotions.

To better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs. We surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these. Although 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events. Substantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP. Understanding the causes of their child's cerebral palsy (CP) was important to parents. Parents most often endorsed intrapartum factors as a cause of CP. Parents reported experiencing strong emotions about the causes of their child's CP.

Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria.

Objective: In Australia, the National Disability Strategy provides a framework to guide actions and investment to achieve equity in social inclusion and economic participation for people with disability. We investigated the social outcomes of school leavers with cerebral palsy (CP) in Victoria, Australia and explored the determinants of desirable outcomes.Methods: We used the Victorian CP Register to invite all adults with CP aged 18–25 years (n = 649). On-line and/or paper-based surveys explored participation in education, employment, community activities, living situation, relationships and life satisfaction. Functional and health status data were collected. Social outcomes were summarized descriptively and compared between individuals with CP and non-disabled peers aged 18–25 years from the Household Income and Labor Dynamics in Australia dataset. Within the CP cohort we explored whether physical and mental health and level of functioning were associated with social outcomes. In addition, a descriptive comparison was undertaken between the social outcomes of the current CP cohort with that of a previously reported 2007 cohort.Results: Ninety participants (57% male; mean age 22.4 years (SD: 2.2) in 2020; 61.1% self-reported) provided data for analyses; response rate 16.9%. CP characteristics were similar between respondents and non-respondents. In comparison to similar aged peers, 79.8% had completed secondary school (compared to 83.2%); 32.6% (compared to 75.8%) were in paid work; 87.5% (compared to 48.2%) were living in their parental home; and 3.4% (compared to 31.6%) were married or partnered. Individuals with CP and higher levels of functional capacity and better physical health were more likely to undertake post-secondary education. Higher levels of functional capacity and physical health, as well as lower mental health status were associated with being employed.Conclusions: While foundational education completion rates were similar to non-disabled peers, significant gaps in social outcomes remain, including residence in the parental home and single status. While addressing these issues is challenging, substantial efforts are needed to reduce these disparities—work that needs to be done in collaboration with people with CP and their families.

Communication behaviours of children with cerebral palsy who are minimally verbal.

There is a lack of population-based studies exploring the communicative behaviours of minimally verbal children with cerebral palsy (CP), with factors associated with superior and poorer communication outcomes unknown. This study aimed to examine the communication behaviours of minimally verbal children with CP recruited from a representative community sample and to identify factors associated with communication outcomes. Twenty minimally verbal children aged 5-6 years, recruited through the Victorian Cerebral Palsy Register, completed the Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS-DP). Linear regressions examined child-related and environmental factors associated with communication outcomes. CSBS-DP total raw scores ranged from 0 to 113. Strengths were the use of conventional gestures and understanding of language. Challenges were noted in using sequential action schemes during play. Communication typically served to regulate the behaviour of others. All participants demonstrated reduced functional communication (Communication Function Classification System levels III-IV). In the multivariable regression model adjusted for cognition, poorer communication skills were associated with Manual Ability Classification System levels IV-V (P = 0.004). Although some children with CP who are minimally verbal use a variety of communication functions, significant functional limitations may be apparent. Severe upper limb impairment may provide an early indication of greater communication difficulties.

Definition and diagnosis of cerebral palsy in genetic studies: a systematic review.

To conduct a systematic review of phenotypic definition and case ascertainment in published genetic studies of cerebral palsy (CP) to inform guidelines for the reporting of such studies. Inclusion criteria comprised genetic studies of candidate genes, with CP as the outcome, published between 1990 and 2019 in the PubMed, Embase, and BIOSIS Citation Index databases. Fifty-seven studies met the inclusion criteria. We appraised how CP was defined, the quality of information on case ascertainment, and compliance with international consensus guidelines. Seven studies (12%) were poorly described, 33 studies (58%) gave incomplete information, and 17 studies (30%) were well described. Missing key information precluded determining how many studies complied with the definition by Rosenbaum et al. Only 18 out of 57 studies (32%) were compliant with the Surveillance of Cerebral Palsy in Europe (SCPE) international guidelines on defining CP. Limited compliance with international consensus guidelines on phenotypic definition and mediocre reporting of CP case ascertainment hinders the comparison of results among genetic studies of CP (including meta-analyses), thereby limiting the quality, interpretability, and generalizability of study findings. Compliance with the SCPE guidelines is important for ongoing gene discovery efforts in CP, given the potential for misclassification of unrelated neurological conditions as CP.

Sleep problems and solution seeking for children with cerebral palsy and their parents.

Sleep problems are common in school-aged children with cerebral palsy (CP). Despite the significant impact of sleep disturbance and deprivation, there is a paucity of research in the area. The aims of this study were to (i) investigate the frequency of sleep problems in children with CP and their parents and (ii) understand what happens when parents ask for help with sleep problems from their health-care professionals. This was a prospective cohort study using an online survey sent to parents/primary care givers of children with CP aged 6-12 years recruited through the Victorian Cerebral Palsy Register. The following sleep assessment tools: The Children's Sleep Habits Questionnaire, the Pittsburgh Sleep Quality Index and the Gross Motor Function Classification System Parent Rating Tool were administered along with custom-designed questions that were informed by a preceding qualitative scoping study. Complete data sets were received from 126 parents/care givers. Almost half (46%) of the parents reported their child had sleep problems. Of the 64 parents who reported seeking help for a child's sleep problem, only 21 indicated that their attempt was successful. If a child had poor sleep, the parent was more likely to have a sleep problem than parents who did not report poor child sleeping. Sleep problems are common in children with CP and their parents. Parents do not always seek help, and those who do may not find an effective solution. Future research should explore how sleep problems can be effectively prioritised for children with CP and their parents/care givers.

Paediatric emergency department presentations due to feeding tube complications in children with cerebral palsy

To describe the characteristics of emergency department (ED) presentations due to complications from gastrostomy or gastrojejunal feeding tubes among children with cerebral palsy (CP), the complexity of complications and the management approaches taken. The Victorian CP Register was linked to the ED databases of Victoria's two tertiary paediatric hospitals, and data on presentations due to feeding tube complications were identified based on discharge diagnosis codes. Additional data on presentations were extracted from medical records. Over 5 years, there were 234 ED presentations due to feeding tube-related complaints among a CP cohort (n = 2183). ED notes were located for 183 of the 234 presentations. The majority of presentations (90%) involved children with severe gross motor impairment. A total of 46% of presentations (n = 84) was triaged as lower urgency, and 68% (n = 124) took place between 08:00 am and 06:00 pm. The most common presenting complaint was tube dislodgement (n = 105; 70%). No investigations were recorded in the majority of cases, and in almost 90% of cases, the feeding tube was successfully replaced in the ED, usually by an ED physician (n = 74) and less frequently by a surgeon (n = 9), gastroenterologist (n = 2) or nurse (n = 8); 9% (n = 17) resulted in a hospital admission. Most ED presentations due to feeding tube complaints in children with CP are in children with severe gross motor impairment but are able to be managed in the ED. As such, it is likely that care givers and other health professionals could manage some of the complications experienced in primary health-care settings closer to home.

Comparing emergency department presentations among children with cerebral palsy with general childhood presentations: a data linkage study.

The aims of this study were to estimate the proportion of emergency department presentations attributable to children with cerebral palsy (CP), investigate the frequency of emergency department presentations in a CP cohort, and compare emergency department presentations among children with CP with those of other children. This was a retrospective cohort study. The Victorian Cerebral Palsy Register was linked to the Victorian Emergency Minimum Dataset. Data on emergency department presentations for the CP cohort occurring between 2007 and 2014 and population control data were obtained. The CP cohort (n=1748) had 7015 emergency department presentations during the 7-year period, accounting for 0.4% of the 1.69 million age-specific presentations during that time. The number of annual presentations per 1000 children rose with increasing CP severity. Compared with presentations among the general population, higher proportions of presentations among the CP cohort were preceded by ambulance arrivals (27% vs 8%), triaged as urgent (66% vs 32%), and required hospital admission (38% vs 12%). The marked differences in presentations between the CP cohort and the general population in the proportions that were urgent and required ambulance arrivals and hospital admissions was an important finding. Strategies to ensure appropriate use of services, including encouragement to seek earlier assistance from primary care providers, may prevent problems escalating to the need for urgent care. Children with cerebral palsy (CP) account for 0.4% of childhood emergency department presentations. More emergency department presentations among children with CP require ambulance arrival. More CP emergency department presentations are urgent and require hospital admission. Traditional emergency department triage scales seem less accurate for this group.

Seizures in Children With Cerebral Palsy and White Matter Injury.

The goal of this study was to describe the prevalence, syndromes, and evolution of seizure disorders in children with cerebral palsy (CP) due to white matter injury (WMI). For this population-based cohort study, brain MRI scans and medical records were reviewed in children in the Victorian Cerebral Palsy Register born between 1999 and 2006 recorded as having WMI. Children were excluded if they had features of an undiagnosed syndrome, associated cortical malformation or injury, or no medical contact in the preceding year. Included were 166 children with CP and isolated WMI due to presumed vascular insufficiency or hemorrhage; 87 were born preterm. Seizure and CP details were obtained from medical records and interviews, and EEG recordings were reviewed. Forty-one children (25%) had seizures beyond the neonatal period. Four children had West syndrome, which resolved with treatment. Thirteen children had febrile seizures that they outgrew. Thirty children had focal epilepsy with seizure manifestations and EEG discharges typical of early-onset childhood occipital epilepsy or childhood epilepsy with centrotemporal spikes; 23 have outgrown these seizures. Two children had idiopathic generalized epilepsy; it was ongoing in 1 child. Fourteen children had evolution from 1 epileptic syndrome to another. At last follow-up (median age, 12.7 years; minimum age, 9.7 years), 80% had not had a seizure for >2 years. The electroclinical features of seizure disorders associated with CP and WMI are those of the age-limited, epileptic syndromes of childhood, with favorable outcome in the majority. The findings have important implications for counseling and drug treatment.

Quality of life in young adults with cerebral palsy

BackgroundLittle is known about the quality of life (QOL) of young adults with cerebral palsy. Objective/hypothesisThis cross-sectional analysis compares the QOL of a cohort of young Australian adults with CP with a cohort of able-bodied peers to explore the relationship between QOL and impairments, functioning, and social participation. MethodsYoung adults identified from the Victorian Cerebral Palsy Register were invited to complete a survey about QOL, gross motor function, independence in self-care, and social participation. QOL was assessed with the Quality of Life Instrument for Young Adults (YAQOL). A general population sample of young North American adults, who had completed the YAQOL was selected for comparison. ResultsSurveys and consent forms were completed by 335 young adults or their proxies, an overall participation rate of 63% of those located. The mean age of the study participants was 24.7 [s.d = 2.8] years; 51% were male and 49% female. Two hundred and seven (62%) of the 335 participants self-reported their QOL. When compared with the general population sample, self-reporting participants had similar QOL scores for the social relationship and environmental context domains (p > 0.05), while QOL scores were lower for the physical health, psychological well-being, and role function domains (p < 0.001). There was no association between psychological well-being and variables related to body structure and gross motor function in young adults with CP. ConclusionsContrary to the assumption that young adults with severe CP have low psychosocial well-being, it is apparent that these individuals can have good psychosocial well-being regardless of their disability.

Medical service use in children with cerebral palsy: The role of child and family factors characteristics.

The aim of the study was to investigate the patterns of medical service use in children with cerebral palsy (CP), taking into account child and family characteristics. Nine hundred and one parents and carers of children registered with the Victorian CP Register were invited to complete a survey. Participants were asked about their child's appointments with general practitioners and public and private paediatric medical specialists over the preceding 12 months. Information on family characteristics and finances was also collected. Data on CP severity and complexity were extracted from the CP Register. Three hundred and fifty parents and carers (39%) participated. Of these, 83% reported that their child had ≥1 appointment with a general practitioner over the preceding 12 months, while 84% had ≥1 appointment with a public or private paediatric medical specialist. Overall, 58% of children saw 2-5 different paediatric medical specialists, while 9% had appointments with ≥6 clinicians. Children with severe and complex CP were more likely to have had ≥1 appointment with a publically funded paediatric medical specialist and had seen a greater number of different clinicians over the study period. Family characteristics were not associated with service use. Children with CP are managed by a number of paediatric medical specialists, and they continue to see a range of specialists throughout adolescence. In Victoria, differences in service use are not based on family characteristics; instead the highest service users are those with severe and complex CP. For this group, care co-ordination and information sharing between treating clinicians are important, if gaps in care are to be avoided.

Temporal trends in cerebral palsy by impairment severity and birth gestation.

Our aim was to build on previous research indicating that rates of cerebral palsy (CP) in the Australian state of Victoria are declining, and examine whether severity of impairments is also decreasing. Data on individuals with CP were extracted from the Victorian Cerebral Palsy Register for birth years 1983 to 2009. The yearly rates of dichotomized categories for gross motor function, motor laterality, intellectual impairment, and epilepsy per 1000 neonatal survivors and proportions in the CP cohort were tabulated and plotted by birth gestation. Linear regression modelling was used to fit prediction curves; likelihood ratio tests were used to test for differences in trends between impairment severity groups. Since the mid-1990s, CP rates declined in neonatal survivors of birth at all gestations. Our data suggest that the decreasing CP rates were associated with relatively greater decreases in the rates of Gross Motor Function Classification System levels III to V, bilateral CP, epilepsy, and intellectual impairment (all p<0.005). Some variation was seen between birth gestation groups. Declines in rates of CP of all levels of severity and complexity from the mid-1990s provides 'real-world' support for the effectiveness of concurrent neuroprotective strategies and continual innovation in perinatal practices.

Language outcomes of children with cerebral palsy aged 5 years and 6years: a population-based study.

To examine the frequency, range, and features of language impairment in a community sample of children with cerebral palsy (CP) aged 5 to 6years. Children with CP born between 2005 and 2007 were identified through the Victorian Cerebral Palsy Register. Eighty-four participants were recruited, representing 48% of the contacted families. The recruited sample was representative of non-participants. Participants completed standardized measures of receptive and expressive language, and non-verbal cognition. Language impairment was identified in 61% (51/84) of participants. Twenty-four per cent (20/84) were non-verbal. Co-occurring receptive and expressive language impairment was common (37/84, 44%). Isolated receptive (6/84, 7%) and expressive (4/84, 5%) impairments occurred relatively infrequently. At a group level, verbal and non-verbal participants demonstrated deficits across language subdomains (i.e. semantics, syntax, morphology), rather than in single domains. Cognitive impairment and Gross Motor Function Classification System levels IV and V were associated with higher rates of language impairment (odds ratio [OR] 15.2, 95% confidence interval [CI] 3.2-71.8 and OR 8.5, 95% CI 1.8-40.3 respectively). Only cognition was independently associated with language impairment when both of these factors were considered within a multivariable model. Language impairment was common in 5-year-old and 6-year-old children with CP, affecting three out of five children. Participants were impaired across linguistic subdomains indicating a generalized language deficit. Findings suggest most children would benefit from a clinical language assessment. To target services effectively, subgroups of individuals with CP at greatest risk for language impairment need to be identified.

Tertiary paediatric hospital admissions in children and young people with cerebral palsy.

Many previous studies that have investigated hospital admissions in children and young people with cerebral palsy lack information on cerebral palsy severity and complexity. Consequently, little is known about factors associated with the frequency and type of hospital admissions in this population. This study used hospital admission data available for all children and young people known to a population-based cerebral palsy register to describe the patterns of use of tertiary paediatric hospital services over a 5-year period. This was a retrospective cohort analysis of routinely collected admission data from the two tertiary paediatric hospitals in the Australian state of Victoria. Data on admissions of individuals born between 1993 and 2008 registered on the Victorian Cerebral Palsy Register were analysed (n = 2183). Between 2008 and 2012, 53% of the cohort (n = 1160) had at least one same-day admission, and 46% (n = 996) had one or more multi-day admissions. Those with a moderate to severe motor impairment and those with a co-diagnosis of epilepsy had more admissions, and for multi-day admissions, longer lengths of stay, P < 0.05. Across all severity levels, respiratory and musculoskeletal diseases were the most frequently reported reasons for medical and surgical admissions, respectively. All-cause readmission rates for urgent multi-day stays within 7, 30 and 365 days of an index admission were 10%, 23% and 63%, respectively. The reasons for hospital admissions reported here reflect the range of comorbidities experienced by children and young people with cerebral palsy. This study highlights priority areas for prevention, early diagnosis and medical management in this group. Improved primary and secondary prevention measures may decrease non-elective hospital admissions and readmissions in this group and reduce paediatric inpatient resource use and healthcare expenditure attributable to cerebral palsy.

Tertiary paediatric emergency department use in children and young people with cerebral palsy.

The aim of this study was to describe the pattern of tertiary paediatric emergency department (ED) use in children and young people with cerebral palsy (CP). A retrospective analysis of ED data routinely collected at the two tertiary paediatric hospitals in Victoria, Australia, cross-matched with the Victorian Cerebral Palsy Register. Data pertaining to the ED presentations of 2183 registered individuals born 1993-2008 were obtained. Between 2008 and 2012, 37% (n = 814) of the CP cohort had 3631 tertiary paediatric ED presentations. Overall, 40% (n = 332) of presenters were residing in inner metropolitan Melbourne; 44% (n = 356) in outer Melbourne; and 13% (n = 108) in regional Victoria. Presenters were more likely than non-presenters to be younger, non-ambulant and have epilepsy. In total, 71% of presentations were triaged as Australasian Triage Scale 1-3 (urgent), and 44% resulted in a hospital admission. Disorders of the respiratory, neurological and gastrointestinal systems, and medical device problems were responsible for 72% of presentations. Many of the tertiary paediatric ED presentations in this group were appropriate based on the high admission rate and the large proportion triaged as urgent. However, there is evidence that some families are bypassing local services and travelling long distances to attend the tertiary paediatric ED, even for less urgent complaints that do not require hospital admission. Alternative pathways of care delivery, and strategies to promote the management of common problems experienced by children and young people with CP in non-paediatric EDs or primary care settings, may go some way towards reducing unnecessary tertiary paediatric ED use in this group.

Motor speech impairment, activity, and participation in children with cerebral palsy

The present study used a population-based sample of children with cerebral palsy (CP) to estimate the prevalence of motor speech impairment and its association with activity and participation. A sample of 79 Victorian children aged 4 years 11 months to 6 years 5 months was recruited through the Victorian CP Register. The presence of motor speech impairment was recorded using the Viking Speech Scale (VSS). Activity and participation outcomes included speech intelligibility (the National Technical Institute for the Deaf rating scale, NTID), the Functional Communication Classification System (FCCS) and Communication Function Classification System (CFCS). A parent completed rating scale was used to examine the association between motor speech impairment and participation. Ninety per cent (71/79) of children demonstrated a motor speech impairment. Strong associations were found between the VSS and NTID (< .001), CFCS (< .001), and FCCS levels (<.001). VSS levels III–IV were significantly associated with restrictions in home, school, and community-based participation as perceived by parents. Although some diversity in activity and participation outcomes was observed within specific VSS levels, the results of this study suggested that children with mild motor speech impairments are more likely to demonstrate superior activity and participation outcomes compared to children with moderate or severe deficits.

An Australian population study of factors associated with MRI patterns in cerebral palsy

The aim of this study was to describe the distribution of magnetic resonance imaging (MRI) patterns in a large population sample of children with cerebral palsy (CP) and to examine associations between MRI patterns, and antenatal and perinatal variables. Data were retrieved from the Victorian CP Register for 884 children (527 males, 357 females) born between 1999 and 2006. Postneonatal MRI was classified for 594 children. For 563 children (329 males, 234 females) for whom classification was to a single MRI pattern, the frequency of each variable was compared between patterns and with the population frequency. White matter injury was the most common MRI pattern (45%), followed by grey matter injury (14%), normal imaging (13%), malformations (10%), focal vascular insults (9%), and miscellaneous patterns (7%). Parity, birth gestation, level of neonatal care, Apgar score, and time to established respiration varied between MRI patterns (p<0.01). Nulliparity was most strongly associated with focal vascular insults, whereas multiparity was associated only with malformations. Grey matter injury was not associated with birth in a tertiary unit, but was strongly associated with severe perinatal compromise. The frequency of neonatal seizures and of nursery admissions was lowest among children with malformations. As known risk factors for CP are differentially associated with specific MRI patterns, future exploration of causal pathways might be facilitated when performed in pathogenically defined groups.

Children with cerebral palsy and periventricular white matter injury: Does gestational age affect functional outcome?

This study aimed to determine differences in functional profiles and movement disorder patterns in children aged 4-12 years with cerebral palsy (CP) and periventricular white matter injury (PWMI) born >34 weeks gestation compared with those born earlier. Eligible children born between 1999 and 2006 were recruited through the Victorian CP register. Functional profiles were determined using the Gross Motor Function Classification System (GMFCS), Manual Abilities Classification System (MACS), Communication Function Classification System (CFCS), Functional Mobility Scale (FMS) and Bimanual Fine Motor Function (BFMF). Movement disorder and topography were classified using the Surveillance of Cerebral Palsy in Europe (SCPE) classification. 49 children born >34 weeks (65% males, mean age 8 y 9 mo [standard deviation (SD) 2 y 2 mo]) and 60 children born ≤ 34 weeks (62% males, mean age 8 y 2 mo [SD 2 y 2 mo]) were recruited. There was evidence of differences between the groups for the GMFCS (p=0.003), FMS 5, 50 and 500 (p=0.003, 0.002 and 0.012), MACS (p=0.04) and CFCS (p=0.035), with a greater number of children born ≤ 34 weeks more severely impaired compared with children born later. Children with CP and PWMI born >34 weeks gestation had milder limitations in gross motor function, mobility, manual ability and communication compared with those born earlier.

Immunisation coverage in children with cerebral palsy compared with the general population

To compare immunisation coverage of a cerebral palsy (CP) cohort with the known general population vaccination coverage statistics. A cohort of children with CP aged less than 7 years was extracted from the Victorian Cerebral Palsy Register. The vaccination status of these children was compared with the general population using the Australian Childhood Immunisation Register (ACIR). Details that were audited included overall 'up-to-date' status of immunisations and individual vaccines missed. The CP cohort consisted of 449 children. Eighty-six or 19.2% (95% confidence intervals 15.6-23.1%) of these children were not 'up to date' (NUTD) with the Australian immunisation schedule at the time of the ACIR data link (13 March 2009). This NUTD result is well above the general population percentage (range 6.4-8%). This group was divided into subgroups based on age, with all groups having significantly lower rates of immunisation, varying from 100% NUTD in the youngest subgroup to 18.6% in the oldest subgroup. The most common vaccine NUTD was MMR (measles, mumps and rubella), followed by polio and DTaP (diphtheria-tetanus-acellular pertussis). This study demonstrates that children with CP are at high risk of incomplete and delayed immunisation, a significant problem given the increased health-care needs of this patient group and their increased vulnerability to the complications of vaccine-preventable diseases.

Prevalence and predictors of drooling in 7‐ to 14‐year‐old children with cerebral palsy: a population study

To establish a prevalence estimate for drooling and explore factors associated with drooling in a population sample of children with cerebral palsy (CP) aged 7 to 14 years living in Victoria, Australia. A self-report questionnaire was used to collect data on drooling from parents of children born between 1996 and 2001, and registered with the Victorian Cerebral Palsy Register. A total of 385 children (231 males, 154 females; mean age 10y 9mo [SD 1y 7mo], range 8-14y) were studied. The clinical type and distribution of CP were spastic (341), ataxic (16), dyskinetic (17), hypotonic (10), and unknown (1). Distribution in Gross Motor Function Classification System (GMFCS) levels was I (103), II (98), III (52), IV (63), V (61), and unknown (8). After adjustment for topographical pattern of motor impairment and GMFCS level, 40% were reported to have experienced drooling between 4 years of age and the time of completing the questionnaire. A significantly higher prevalence of drooling was found in children with poor gross motor function and in those with more severe presentations of CP, including poor head control, difficulty with eating, and inability to sustain lip closure (p<0.001 for each). Drooling was shown to be significantly associated with both intellectual disability and epilepsy in this group of children (p<0.001 for both). With a prevalence of 40%, drooling is an important comorbidity in CP. It was considered severe in 15% of children. Poor oromotor function was associated with drooling and could be the target of interventions for this under-researched problem.

Using the Gross Motor Function Classification System to describe patterns of motor severity in cerebral palsy

The aim of this study was to describe the distribution of motor severity levels and temporal trends in an Australian population cohort and to review the distribution of Gross Motor Function Classification System (GMFCS) levels across cerebral palsy (CP) registries worldwide. Data were extracted from the Victorian Cerebral Palsy Register for 3312 individuals (1852 males, 1460 females; mean age 21y 2mo [SD 9 y 6 mo]) with non-postneonatally acquired CP, born between 1970 and 2003. The proportions of each motor severity level were calculated and logistic regression analyses were used to assess trends over time. A systematic review of the literature was undertaken and GMFCS data were extracted based on previously devised criteria. The proportions were plotted and the degree of heterogeneity was assessed for each level. Population data from Victoria suggested a proportional increase in mild motor impairment (GMFCS levels I/II) from 54% of all cases of CP in the 1970s to 61% in the 2000s. For nine CP registries worldwide, the mean proportions of each GMFCS level, from level I to V, were 34.2%, 25.6%, 11.5%, 13.7%, and 15.6% respectively. There was substantial heterogeneity between registries for all levels except level III. Despite the usefulness and reported reliability of the GMFCS, substantial variability was found in the distribution of GMFCS levels between population registries, particularly between levels I and II, suggesting greater classification uncertainty between these levels. Further research would be useful to determine whether routine collection of extra clinical information may facilitate more reliable classification.