Search

Aim: 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.Methods: 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.Results: 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.Conclusions: 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. [ABSTRACT FROM AUTHOR]

Aims: 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).Methods: 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.Results: 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.Conclusion: 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. [ABSTRACT FROM AUTHOR]

Aim: To assess the recording of weight and height in children with disabilities and identify subgroups at risk of being either underweight or overweight. Methods: A retrospective clinical audit was undertaken within the Department of Developmental Medicine at The Royal Children's Hospital, Melbourne. Most recent weight and height measurements and data about the child's underlying condition were collected from the medical records of children attending a clinical appointment over a 3-month period. Primary medical diagnosis, age, gender, mode of feeding and ability to ambulate were recorded. Body mass index was calculated and corrected for age and gender. Results: Study sample size was 583 (356 males), mean age was 8.25 years (range 2.8-17.4 years). Body mass index could be calculated for 48%. Height was less commonly measured in those with severe physical impairments. A survey of barriers to weight and height measurement showed that the main barrier to measuring height was practical difficulties. The percentage of children classified as overweight/obese was 26.6% and this was associated with intellectual disabilities, moderately impaired ambulation, older age and female gender; 13.5% of the study group was underweight, the majority of whom were non-ambulant. Conclusions: Although significant rates of underweight and overweight were identified in children with a range of disabilities within our service, monitoring of weight status was suboptimal. Despite this, data indicate that specific subgroups of children with disability appear at risk of being either overweight or underweight. Where height cannot be measured, other anthropometric measures such as waist circumference may be useful in the assessment of children with disabilities. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to describe the rates, predictors and causes of mortality in a population sample of individuals with Prader-Willi syndrome (PWS). Methods: One hundred sixty-three individuals with PWS (90 males and 73 females, ages: 3 weeks to 60 years) were identified from the Victorian PWS Register. Information on demographics, age at diagnosis, genetic mechanism, age at which obesity developed and last known body mass index measurement were extracted. Notification and causes of death were obtained through linkage with Australian national and state of Victoria death indexes. Survival analysis was used to estimate the probability of survival and the effect of obesity on survival. Mortality rate ratios were calculated to investigate the effect of the factors listed above on mortality. Results: Fifteen deaths were recorded (nine males and six females), corresponding to an 87% probability of survival to 35 years. The probability of survival was significantly lower for individuals with known obesity ( P= 0.03), but there was no strong evidence for an effect on survival for the other factors studied. Cardiac or respiratory conditions were common causes of death after the age of 15 years. Conclusions: The effect of known obesity on the probability of survival and the causes of death reported in this and other studies suggest an important association between obesity and early death in adults with PWS. This finding highlights the critical nature of preventative and intervention strategies aimed at minimising the effects of hyperphagia in individuals with PWS. [ABSTRACT FROM AUTHOR]

Aim: To use the information from a population-based cerebral palsy register to describe post-neonatally acquired cerebral palsy, to determine trends over time and relate any aetiological trends to community preventative measures. Methods: Data on cases of post-neonatally acquired cerebral palsy, between the birth years 1970 and 1999, were generated from the Victorian Cerebral Palsy Register. Distributions, rates and trends over time were calculated for the entire cohort and for subgroups according to gender, age at acquisition, aetiology, gestation at delivery, birthweight, maternal age at delivery and parity. Results: 339 cases were found with post-neonatally acquired cerebral palsy, accounting for 10.7% of all cerebral palsy and giving an overall rate of 1.98/10 000 live births. There was a statistically significant fall in the overall rate of post-neonatally acquired cerebral palsy ( P = 0.001) over the study period. Significant falls were seen in post-neonatal cerebral palsy due to infection, traumatic head injury and hypoxia and other acute encephalopathies, but not cerebrovascular accidents. Conclusion: A large proportion of post-neonatally acquired cerebral palsy is preventable. While the reported decline in cases in Victoria is encouraging, it will be important to monitor these trends over time, and continue public health measures to further reduce preventable causes. [ABSTRACT FROM AUTHOR]

Aims: To describe the prevalence of, and factors associated with, anxiety in 6-18-year-old children with cerebral palsy (CP) and determine how often clinicians screen for and manage anxiety in this group.Methods: Using a population CP register as the sampling pool, 569 families were approached by email, and 172 (mean age of children 12 years 7 months [SD 3 years 5 months]; 96 males) participated. Parents and, where able, children completed the Screen for Child Anxiety Related Emotional Disorders (SCARED). Parents also completed the Strengths and Difficulties Questionnaire. Children's medical records were searched for previous anxiety diagnoses and treatments.Results: Clinically significant anxiety was identified in 38% of children on parent reports and 46% on child reports. Girls were twice as likely to have anxiety (p = 0.02). Parent- and child-reported scores were strongly correlated (r = 0.853). Fewer parents of children with intellectual and communication impairments completed the survey. Based on the SCARED parent reports, anxiety was not identified by a clinician in 16 children (43%) with clinically significant anxiety.Conclusion: Anxiety symptoms are prominent among children with CP, indicating a need for routine screening. Available screening tools are unsuitable for children with more severe limitations in cognition and communication; further research is needed to address this gap. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to describe the patterns of therapy service use for a sample of children and adolescents with cerebral palsy over a 1 year period and to identify factors associated with frequency of therapy and parental satisfaction with therapy frequency.Methods: Parents of 83 children completed a survey on their child's use of occupational therapy, physiotherapy and speech and language pathology services over the previous year. Participants were randomly selected from a sample stratified by age and Gross Motor Function Classification System (GMFCS) level.Results: During the year prior to survey completion, 83% of children had received occupational therapy, 88% had received physiotherapy and 60% had received speech and language pathology services. Frequency of therapy was higher for younger children (P < 0.01), those classified at GMFCS levels IV-V (P < 0.05) and those attending schools specifically for children with disabilities.Conclusions: Current structures for therapy service delivery for children with cerebral palsy are systems-based, and age-based funding systems and the organisation of services around the education system are preventing the delivery of needs-based therapy. Paediatricians that care for children and young people with cerebral palsy need to pay particular attention to those that may miss out on therapy due to age or school type, and support these families in accessing appropriate therapy. [ABSTRACT FROM AUTHOR]

Aim: 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.Methods: 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.Results: 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.Conclusions: 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. [ABSTRACT FROM AUTHOR]