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1.
Article in English | MEDLINE | ID: mdl-38973618

ABSTRACT

AIM: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention used to reduce spasticity in children with cerebral palsy (CP). There is minimal relevant, evidence-based information available for Australian families and clinicians. This study aims to investigate the knowledge of people with lived experience and clinicians regarding SDR, including how they currently access information and what information they seek. METHODS: Adults with CP, carers of children with CP and clinicians treating children with CP were invited to complete an online survey. Data regarding participant demographics, current knowledge and confidence in knowledge about CP and SDR, information source/s used and participants level of trust in these sources are presented as counts and percentages. Comparisons in knowledge between groups were analysed. RESULTS: A total of 114 surveys were completed: 63 clinicians, 48 carers, and 3 adults with CP. Eighty percent of clinicians were allied health professionals. People with lived experience were less confident in their knowledge about SDR compared to knowledge of CP (P < 0.001). Clinicians rated scientific research literature and the hospital team as the most useful and trustworthy information source. People with lived experience used a wider range of information sources including the internet, rating their community therapy team and other people with lived experience as the most useful. CONCLUSION: This study identified a lack of confidence in knowledge of SDR for people with lived experience, likely due to a gap in accessible and readable evidence-based information. While both groups differed in how they access information, there was agreement that greater information about SDR is needed.

2.
Paediatr Perinat Epidemiol ; 38(1): 22-30, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38035765

ABSTRACT

BACKGROUND: Administrative health data, such as hospital admission data, are often used in research to identify children/young people with cerebral palsy (CP). OBJECTIVES: To compare sociodemographic, clinical details and mortality of children/young people identified as having CP in either a CP population registry or hospital admission data. METHODS: We identified two cohorts of children/young people (birth years 2001-2010, age at study end or death 2 months to 19 years 6 months) with a diagnosis of CP from either (i) the New South Wales (NSW)/Australian Capital Territory (ACT) CP Register or (ii) NSW hospital admission data (2001-2020). Using record linkage, these data sources were linked to each other and NSW Death, Perinatal, and Disability datasets. We determined the sensitivity and positive predictive value (PPV) of CP diagnosis in hospital admission data compared with the NSW/ACT CP Register (gold standard). We then compared the sociodemographic and clinical characteristics and mortality of the two cohorts available through record linkage using standardised mean difference (SMD). RESULTS: There were 1598 children/young people with CP in the NSW/ACT CP Register and 732-2439 children/young people with CP in hospital admission data, depending on the case definition used. The sensitivity of hospital admission data for diagnosis of CP ranged from 0.40-0.74 and PPV 0.47-0.73. Compared with children/young people with CP identified in the NSW/ACT CP Register, a greater proportion of those identified in hospital admission data (one or more admissions with G80 case definition) were older, lived in major cities, had comorbidities including epilepsy, gastrostomy use, intellectual disability and autism, and died during the study period (SMD > 0.1). CONCLUSIONS: Sociodemographic and clinical characteristics differ between cohorts of children/young people with CP identified using a CP register or hospital admission data. Those identified in hospital admission data have higher rates of comorbidities and death, suggesting some may have progressive conditions and not CP. These differences should be considered when planning and interpreting research using various data sources.


Subject(s)
Cerebral Palsy , Child , Humans , Adolescent , Cerebral Palsy/epidemiology , Australia , Registries , Information Storage and Retrieval , Hospitals
3.
Dev Med Child Neurol ; 2023 Nov 10.
Article in English | MEDLINE | ID: mdl-37946594

ABSTRACT

AIM: To describe the relationships between outpatient encounters, continuity of care, and unplanned hospital care in children/young people with cerebral palsy (CP). METHOD: In this population-based data-linkage cohort study we included children/young people with CP identified in the New South Wales/Australian Capital Territory CP Register (birth years 1994-2018). We measured the frequency of outpatient encounters and unplanned hospital care, defined as presentations to emergency departments and/or urgent hospital admissions (2015-2020). Continuity of outpatient care was measured using the Usual Provider of Care Index (UPCI). RESULTS: Of 3267 children/young people with CP, most (n = 2738, 83.8%, 57.6% male) had one or more outpatient encounters (123 463 total encounters, median six outpatient encounters per year during childhood). High UPCI was more common in children/young people with mild CP (Gross Motor Function Classification System levels I-III, with no epilepsy or no intellectual disability), residing in metropolitan and areas of least socioeconomic disadvantage. Low UPCI was associated with four or more emergency department presentations (adjusted odds ratio [aOR] 2.34; 95% confidence interval [CI] 1.71-3.19) and one or more urgent hospital admissions (aOR 2.02; 95% CI 1.57-2.61). INTERPRETATION: Children/young people with CP require frequent outpatient services. Improving continuity of care, particularly for those residing in regional/remote areas, may decrease need for unplanned hospital care.

4.
Child Care Health Dev ; 49(4): 760-768, 2023 07.
Article in English | MEDLINE | ID: mdl-36513964

ABSTRACT

AIM: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). METHOD: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. RESULTS: Fifty-two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self-care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). CONCLUSIONS: Collaborative goal setting is an integral part of family-centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences.


Subject(s)
Cerebral Palsy , Rhizotomy , Humans , Rhizotomy/methods , Quality of Life , Goals , Australia , Canada , Cerebral Palsy/rehabilitation , Treatment Outcome
5.
Dev Med Child Neurol ; 64(12): 1507-1516, 2022 12.
Article in English | MEDLINE | ID: mdl-35665493

ABSTRACT

AIM: To compare biofeedback assisted relaxation training (BART) with distraction therapy for pain during botulinum neurotoxin A (BoNT-A) treatment. METHOD: This was a crossover randomized controlled trial. Eligible participants were 7 years and older with neurological conditions. Participants were randomized to receive BART or distraction during their first BoNT-A treatment, followed by the alternative intervention in their subsequent BoNT-A treatment. BART was delivered via BrightHearts, an interactive heart-rate-responsive application. Outcomes were pain (Faces Pain Scale - Revised), fear (Children's Fear Scale), and anxiety (numerical rating scale, State-Trait Anxiety Inventory). Demographics, paired t-tests, and linear mixed models were used to compare outcomes. RESULTS: Thirty-eight participants (mean [SD] age 13 years 5 months [3 years 4 months], 20 males, 34 with cerebral palsy) completed both interventions. There were non-significant differences in overall pain (mean difference - 0.05, 95% confidence interval [CI] -0.91 to 0.80, p = 0.902) and worst pain (mean difference 0.37, 95% CI -0.39 to 1.13, p = 0.334) when using BART and distraction therapy. There were non-significant differences in fear and anxiety between interventions. Younger age, heightened pre-procedural state anxiety, and Gross Motor Function Classification System levels III and IV were associated with poorer outcomes (p < 0.05). Participants who received BART before distraction therapy reported lower pain and anxiety scores during both BoNT-A treatments (p < 0.05). INTERPRETATION: Children reported similar pain when using BART and distraction therapy. Those who used BART before distraction therapy reported lower pain and anxiety during both treatments. WHAT THIS PAPER ADDS: Children reported similar pain (overall; worst) when using biofeedback assisted relaxation training (BART) and distraction therapy. Children who used BART before distraction therapy reported lower pain and anxiety over both botulinum neurotoxin A treatments. Younger age, pre-procedural state anxiety, and Gross Motor Function Classification System levels III and IV predicted a worse pain experience. Distraction therapy and BART were acceptable non-pharmacological interventions for procedural pain management.


Subject(s)
Botulinum Toxins, Type A , Child , Male , Humans , Adolescent , Botulinum Toxins, Type A/therapeutic use , Biofeedback, Psychology , Pain/etiology , Anxiety/etiology , Anxiety/therapy , Pain Management
6.
Dev Med Child Neurol ; 64(9): 1106-1113, 2022 09.
Article in English | MEDLINE | ID: mdl-35244200

ABSTRACT

AIM: To determine factors that influence non-attendance at outpatient clinics by children with cerebral palsy (CP). METHOD: This was a retrospective cohort study of 1395 children with CP (59.6% male; born 2005 to 2017) identified from the New South Wales (NSW)/Australian Capital Territory CP Register, who had scheduled appointments at outpatient clinics at two NSW tertiary paediatric hospitals between 2012 and 2019. Associations between sociodemographic, clinical, and process-of-care factors and non-attendance were examined using multivariate logistic regression with generalized estimating equations. RESULTS: A total of 5773 (12%) of 50 121 scheduled outpatient days were not attended. Non-attendance increased over time (average increase 5.6% per year, 95% confidence interval [CI]: 3.7-7.3). Older children aged 5 to 9 years (adjusted odds ratio [aOR] 1.11; 95% CI: 1.02-1.22) and 10 to 14 years (aOR 1.17; 95% CI: 1.03-1.34), socioeconomic disadvantage (aOR 1.29; 95% CI: 1.11-1.50), previous non-attendance (aOR 1.38; 95% CI: 1.23-1.53), and recent rescheduled or cancelled appointments (aOR 1.08; 95% CI: 1.01-1.16) were associated with increased likelihood of non-attendance. INTERPRETATION: One in eight outpatient appointments for children with CP were not attended. Non-attendance was associated with increasing age, socioeconomic disadvantage, previous non-attendance, and recent rescheduled or cancelled appointments. Identifying specific barriers and interventions to improve access to outpatient services for these groups is needed. WHAT THIS PAPER ADDS: Twelve per cent of scheduled appointments for children with cerebral palsy are not attended. Proportions of appointments not attended has increased over the last decade. Increasing age and socioeconomic disadvantage increase the likelihood of non-attendance. Previous non-attendance and recent cancelled or rescheduled appointments increase the likelihood of further non-attendance.


Subject(s)
Cerebral Palsy , Adolescent , Ambulatory Care Facilities , Appointments and Schedules , Australia , Cerebral Palsy/therapy , Child , Female , Humans , Male , Retrospective Studies
7.
Dev Med Child Neurol ; 64(3): 364-371, 2022 03.
Article in English | MEDLINE | ID: mdl-34553772

ABSTRACT

AIM: To explore the lived experiences of pain in children and young people with cerebral palsy (CP). METHOD: Participants were recruited from the Sydney Children's Hospitals Network and the New South Wales/Australian Capital Territory CP Registers. Inclusion criteria were as follows: CP; aged 9 to 17 years; current/past experience of pain; fluent in English; no greater than mild intellectual disability. Purposive sampling ensured representation across age, motor subtypes, and Gross Motor Function Classification System (GMFCS) levels. Semi-structured face-to-face interviews were conducted. Data were analysed following an interpretative phenomenological approach. RESULTS: Ten participants (three male) were included (mean age 14y 5mo, SD 2y), GMFCS levels I (n=4), II (n=3), III (n=2), and IV (n=1). Analysis led to three superordinate themes: (1) Everybody's experience of pain is different; (2) When the pain is winning; (3) 'I know how to deal with it'. Pain contributors and locations varied between children. Pain intruded on school, physical activity, and psychosocial functioning. Children described personalized strategies used to deal with pain. INTERPRETATION: In this study, children self-reported highly individualized pain experiences which interfered with their daily life and psychosocial well-being. There is a need for improvement in pain assessment and a personalized approach to pain management.


Subject(s)
Activities of Daily Living , Cerebral Palsy/complications , Pain/physiopathology , Pain/psychology , Psychosocial Functioning , Registries , Adolescent , Child , Female , Humans , Male , New South Wales , Pain/etiology , Pain Management , Pain Measurement , Qualitative Research
8.
Disabil Rehabil ; 44(23): 7161-7166, 2022 11.
Article in English | MEDLINE | ID: mdl-34613866

ABSTRACT

PURPOSE: Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. METHOD: A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". RESULTS: After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. CONCLUSION: These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.Implications for rehabilitationChronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.


Subject(s)
Cerebral Palsy , Chronic Pain , Child , Humans , Adolescent , Cerebral Palsy/complications , Cerebral Palsy/psychology , Chronic Pain/diagnosis , Chronic Pain/psychology , Consensus , Quality of Life , Delphi Technique
9.
Obes Res Clin Pract ; 15(2): 138-144, 2021.
Article in English | MEDLINE | ID: mdl-33546995

ABSTRACT

AIM: Obesity causes altered gait patterns in typically developing children, but its effect on gait in children with physical disabilities is largely unknown. This study explores associations between body mass index (BMI), functional mobility and gait in children with cerebral palsy (CP). METHOD: An observational cross-sectional study was conducted using three-dimensional gait analysis data from 197 children with CP, Gross Motor Functional Classification System (GMFCS) levels I to III. BMI values were categorised using the Centres for Disease Control and Prevention (2000) BMI percentiles, which are specific to age and gender. Regression analyses, with GMFCS level as a covariate, explored associations between BMI category and temporal-spatial, kinematic and functional mobility variables. Analyses included children categorised as healthy weight and overweight/obese only (n = 174), with underweight children excluded (n = 23). RESULTS: 131 children (mean age 10.5 years, SD 3) were categorised as healthy weight and 43 children (mean age 9.6 years, SD 2.5) as overweight or obese. BMI was not associated with most gait variables. Increased double support time, reduced hip extension and increased ankle dorsiflexion were observed in children that were overweight, but most differences were small and of uncertain clinical significance. A lower proportion of overweight children walked independently over 500 m. CONCLUSION: We found little evidence that BMI has a substantial influence on gait patterns in children with CP but some to suggest it may affect long-distance mobility. Different research strategies are required to improve understanding of relationships between adiposity, strength and function, for effective targeting of interventions to improve mobility.


Subject(s)
Cerebral Palsy , Gait , Overweight/complications , Pediatric Obesity/complications , Biomechanical Phenomena , Body Mass Index , Cerebral Palsy/physiopathology , Child , Cross-Sectional Studies , Humans
10.
Intern Med J ; 50(9): 1138-1141, 2020 09.
Article in English | MEDLINE | ID: mdl-32929823

ABSTRACT

Young people (YP) with neurological disabilities such as cerebral palsy are increasingly living into adulthood and require healthcare transition for services including for botulinum toxin A (BoNT-A). We analysed medical records in the three children's hospitals in New South Wales (NSW) and identified 253 YP who are expected to transition from paediatric to adult BoNT-A services in NSW and Australian Capital Territory during 2018-2023. A substantial proportion of these YP have additional needs that will require paediatric and adult health services to work together to improve their life-long health outcomes.


Subject(s)
Botulinum Toxins, Type A , Cerebral Palsy , Transition to Adult Care , Adolescent , Adult , Australia , Australian Capital Territory , Cerebral Palsy/drug therapy , Cerebral Palsy/epidemiology , Child , Humans , New South Wales/epidemiology
11.
Lancet Child Adolesc Health ; 3(12): 881-888, 2019 12.
Article in English | MEDLINE | ID: mdl-31604614

ABSTRACT

BACKGROUND: There are few population-based studies of paediatric opioid use. We aimed to investigate the prevalence of opioid dispensing in Australian children and adolescents. METHODS: In this population-based study, we used data from a random sample of 15% of the children and adolescents who had received any medicines between Feb 1, 2013, and Dec 31, 2017, through the Australian Pharmaceutical Benefits Scheme (PBS). We identified children younger than 18 years who had been dispensed at least one PBS-listed opioid in the study period. We calculated the annual prevalence of children being dispensed one or more opioid presciptions, by age group and by opioid characteristics (such as strength and mode of action), and we assessed trends over time with negative binomial regression. We also identified new treatment episodes and quantified the number of opioid prescriptions dispensed in the ensuing year. FINDINGS: During the study period, 78 320 opioid prescriptions were dispensed to 50 730 Australian children, aged 0-17 years, in our sample. In 2017, 135·4 children per 10 000 were dispensed opioids, representing a slight decrease equal to a change of -2·2% (95% CI -3·5 to -0·8) per annum since 2013. The prevalence of opioid dispensing was greater at older ages: in 2017, 5·7 infants per 10 000 younger than 1 year were dispensed opioids, versus 404·8 adolescents per 10 000 aged 13-17 years, meaning that roughly one in 25 adolescents were dispensed opioids. Weak opioids (ie, codeine and tramadol) accounted for 60·7% of the opioids dispensed, and codeine was the most commonly dispensed opioid, accounting for 39 531 (50·5%) prescriptions dispensed. The prevalence of weak opioid dispensing significantly decreased in all age groups (other than infants younger than 1 year), particularly in those younger than 12 years, for whom weak opioids are not recommended. Dispensing of strong opioids, particularly oxycodone, increased in every age group. Of the 29 073 children who received a new course of treatment, 23 318 (80·2%) children were dispensed only one prescription of opioids in that year. Those dispensed two or more opioids were more likely to be adolescents (vs children younger than 13 years), female, and to have been dispensed several unique medicine types in the 3 previous months (vs those receiving one or fewer types). INTERPRETATION: In 2017, one in 74 Australian children, including one in 25 adolescents, were dispensed an opioid. Dispensing of weak opioids decreased between 2013 and 2017, but codeine is still commonly dispensed in younger children and education to reduce this practice is required. Dispensing of strong opioids increased in all age groups. Children and adolescents must receive appropriate pain management, but further evidence on the risks and benefits of opioid use in this young population is needed. FUNDING: Financial Markets Foundation for Children, National Health and Medical Research Council Centre of Research Excellence in Medicines and Ageing, Australian Government Department of Industry, Innovation and Science, Research Foundation of the Cerebral Palsy Alliance (Australia).


Subject(s)
Analgesics, Opioid/therapeutic use , Drug Prescriptions/statistics & numerical data , Drug Utilization/trends , Adolescent , Analgesics, Opioid/administration & dosage , Analgesics, Opioid/classification , Australia/epidemiology , Child , Child, Preschool , Codeine/administration & dosage , Female , Humans , Infant , Infant, Newborn , Male , Oxycodone/administration & dosage , Prevalence , Tramadol/administration & dosage
12.
Mov Disord ; 34(5): 637-656, 2019 05.
Article in English | MEDLINE | ID: mdl-30919519

ABSTRACT

Movement disorders differ in children to adults. First, neurodevelopmental movement disorders such as tics and stereotypies are more prevalent than parkinsonism, and second, there is a genomic revolution which is now explaining many early-onset dystonic syndromes. We outline an approach to children with movement disorders starting with defining the movement phenomenology, determining the level of functional impairment due to abnormal movements, and screening for comorbid psychiatric conditions and cognitive impairments which often contribute more to disability than the movements themselves. The rapid improvement in our understanding of the etiology of movement disorders has resulted in an increasing focus on precision medicine, targeting treatable conditions and defining modifiable disease processes. We profile some of the key disease-modifying therapies in metabolic, neurotransmitter, inflammatory, and autoimmune conditions and the increasing focus on gene or cellular therapies. When no disease-modifying therapies are possible, symptomatic therapies are often all that is available. These classically target dopaminergic, cholinergic, alpha-adrenergic, or GABAergic neurochemistry. Increasing interest in neuromodulation has highlighted that some clinical syndromes respond better to DBS, and further highlights the importance of "disease-specific" therapies with a future focus on individualized therapies according to the genomic findings or disease pathways that are disrupted. We summarize some pragmatic applications of symptomatic therapies, neuromodulation techniques, and some rehabilitative interventions and provide a contemporary overview of treatment in childhood-onset movement disorders. © 2019 International Parkinson and Movement Disorder Society.


Subject(s)
Autoimmune Diseases of the Nervous System/therapy , Clinical Decision-Making , Deep Brain Stimulation , Diet Therapy , Genetic Therapy , Immunologic Factors/therapeutic use , Metabolism, Inborn Errors/therapy , Movement Disorders/therapy , Adrenergic alpha-Agonists/therapeutic use , Anticonvulsants/therapeutic use , Autoimmune Diseases of the Nervous System/complications , Botulinum Toxins, Type A/therapeutic use , Cannabinoids/therapeutic use , Cell- and Tissue-Based Therapy , Chelating Agents/therapeutic use , Chenodeoxycholic Acid/therapeutic use , Child , Dietary Supplements , Dopamine Agents/therapeutic use , Enzyme Replacement Therapy , GABA Agents/therapeutic use , Gastrointestinal Agents/therapeutic use , Glucocorticoids/therapeutic use , Humans , Immunoglobulins, Intravenous/therapeutic use , Metabolism, Inborn Errors/complications , Monoamine Oxidase Inhibitors/therapeutic use , Movement Disorders/etiology , Neuromuscular Agents/therapeutic use , Organophosphorus Compounds/therapeutic use , Pterins/therapeutic use
13.
Med J Aust ; 210(3): 129-135, 2019 02.
Article in English | MEDLINE | ID: mdl-30739332

ABSTRACT

Cerebral palsy is a developmental disorder of movement and posture which is often associated with comorbidities. While there is currently a limited range of evidence-based treatments that change the underlying pathology of cerebral palsy, there are many areas in which health care professionals can change the natural history of cerebral palsy and improve participation and quality of life for children with this condition. Early identification has become of paramount importance in the management of cerebral palsy, and it is hoped that it will allow earlier access to cerebral palsy interventions that may improve the natural history of the condition. Common challenges in the management of cerebral palsy include spasticity and dystonia, management of pain, hip surveillance, sleep and feeding, swallowing and nutrition. The six Fs framework (function, family, fitness, fun, friends and future) provides a guide to developing shared goals with families in the management of cerebral palsy.


Subject(s)
Cerebral Palsy , Cerebral Palsy/classification , Cerebral Palsy/diagnosis , Cerebral Palsy/physiopathology , Cerebral Palsy/therapy , Child , Dystonia , Humans , Muscle Spasticity , Practice Guidelines as Topic , Quality of Life
14.
Dev Med Child Neurol ; 61(3): 315-321, 2019 03.
Article in English | MEDLINE | ID: mdl-30378122

ABSTRACT

AIM: To determine the efficacy of interventions for the management of pain in children and adolescents with cerebral palsy (CP). METHOD: Electronic databases were searched from the earliest date possible to April 2018 using a mixture of subject headings and free text. Inclusion criteria comprised of studies with (1) diagnosis of CP, (2) under the age of 18 years, (3) intervention for the management of pain, (4) outcome measure of pain, and (5) studies published in English-language peer-reviewed journals. RESULTS: Fifty-seven studies met the eligibility criteria. Pain related to (n=number of studies): hypertonia (n=17), spastic hip disease (n=13), procedures for the management of CP (n=7), postoperative (n=18), and other (n=2). Most of the studies were of level III to level V evidence. INTERPRETATION: There is level II evidence to support intrathecal baclofen therapy for pain secondary to hypertonia in spastic and spastic-dyskinetic CP, and non-pharmacological interventions for procedural pain and pharmacological interventions for postoperative pain. Most studies were restricted by retrospective design and limited use of validated outcome measures. Future research is needed to explore multidisciplinary interventions for chronic pain and pain secondary to dystonia. Clinicians and researchers would benefit from a standardized approach to pain assessment. WHAT THIS PAPER ADDS: The strongest evidence exists for pharmacological treatments for postoperative pain in children and adolescents with cerebral palsy (CP). There is moderate evidence for the efficacy of intrathecal baclofen for pain related to hypertonia in predominately spastic CP. There is a lack of standardization in the assessment of pain. There is limited evidence for multimodal and non-pharmacological strategies in paediatric CP.


Subject(s)
Cerebral Palsy/complications , Pain Management , Pain/etiology , Adolescent , Cerebral Palsy/therapy , Child , Humans , Outcome Assessment, Health Care , Pain/diagnosis , Pain Measurement , Young Adult
15.
Dev Med Child Neurol ; 60(11): 1172-1177, 2018 11.
Article in English | MEDLINE | ID: mdl-30146721

ABSTRACT

AIM: To identify factors that increase the likelihood of systemic adverse events after botulinum neurotoxin A (BoNT-A) injections in children with cerebral palsy (CP). METHOD: A prospective observational study of patients attending a BoNT-A clinic at a tertiary paediatric hospital (2010-2014). Occurrences of systemic adverse events, defined as lower respiratory tract illnesses, generalized weakness, dysphagia, and death were determined at follow-up. The relationship between systemic adverse events and eight preinjection variables (age, Gross Motor Function Classification System [GMFCS] level, history of dysphagia, gastrostomy, aspiration pneumonia, recent history of illness, BoNT-A dose, and type of sedation) were examined using univariable and multivariable logistic regression with generalized estimating equations methods. RESULTS: In total 591 children underwent 2219 injection episodes with follow-up in 2158 (97%) cases. Systemic adverse events were reported in 77 (3.6%) injection episodes. Univariable analysis suggested that GMFCS levels IV and V, a history of dysphagia, gastrostomy, aspiration pneumonia, and increasing BoNT-A dose increase the likelihood of systemic adverse events. In multivariable analysis, a history of dysphagia (odds ratio [OR] 3.42) and/or aspiration pneumonia (OR 2.31) remained associated with increased likelihood of systemic adverse events. INTERPRETATION: A history of dysphagia and/or aspiration pneumonia are the factors that most increase the likelihood of systemic adverse events after BoNT-A. WHAT THIS PAPER ADDS: Systemic adverse events occur in 3.6% of botulinum neurotoxin A (BoNT-A) injection episodes. Dysphagia and/or aspiration pneumonia are associated with increased likelihood of systemic adverse events. Multivariable models showed no evidence of association between Gross Motor Function Classification System and systemic adverse events. Multivariable models showed no evidence of association between BoNT-A dose and systemic adverse events.


Subject(s)
Botulinum Toxins, Type A/adverse effects , Cerebral Palsy/drug therapy , Neuromuscular Agents/adverse effects , Adolescent , Botulinum Toxins, Type A/administration & dosage , Cerebral Palsy/complications , Cerebral Palsy/mortality , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Infant , Injections , Logistic Models , Male , Multivariate Analysis , Neuromuscular Agents/administration & dosage , Prospective Studies , Severity of Illness Index , Young Adult
16.
Dev Med Child Neurol ; 60(5): 498-504, 2018 05.
Article in English | MEDLINE | ID: mdl-29451702

ABSTRACT

AIM: To determine the incidence of common adverse events after botulinum toxin A (BoNT-A) injections in children with cerebral palsy (CP) and to identify whether the severity of CP influences the incidence of adverse events. METHOD: This was an observational study of patients attending a BoNT-A clinic at a tertiary paediatric hospital (2010-2014). Data examined included procedural adverse events at the time of injection and at follow-up. Systemic adverse events were defined as lower respiratory tract illnesses, generalized weakness, dysphagia, and death. Severity of CP was categorized by the Gross Motor Function Classification System (GMFCS). The relationships between GMFCS and adverse events were analysed using negative binomial regression models. RESULTS: In total, 591 children underwent 2219 injection episodes. Adverse events were reported during the procedure (130 [6%] injection episodes) and at follow-up (492 [22%] injection episodes). There were significantly increased rates of systemic adverse events in injection episodes involving children in GMFCS level IV (incidence rate ratio [IRR] 3.92 [95% confidence interval] 1.45-10.57]) and GMFCS level V (IRR 7.37 [95% confidence interval 2.90-18.73]; p<0.001). INTERPRETATION: Adverse events after BoNT-A injections are common but mostly mild and self-limiting. Children in GMFCS levels IV and V are at increased risk of systemic adverse events. The relationship between CP severity and BoNT-A adverse events is complex and further research is required to better understand this relationship. WHAT THIS PAPER ADDS: Adverse events reported at the time of botulinum toxin A injection occurred in 6% of injection episodes. Adverse events were reported at follow-up in 22% of injection episodes. Children in Gross Motor Function Classification System (GMFCS) levels IV and V have increased rates of systemic adverse events. Children in GMFCS levels IV and V report less local weakness and pain.


Subject(s)
Botulinum Toxins, Type A/adverse effects , Cerebral Palsy/drug therapy , Neuromuscular Agents/adverse effects , Botulinum Toxins, Type A/administration & dosage , Child , Deglutition Disorders/chemically induced , Female , Humans , Male , Respiratory Tract Infections/chemically induced , Retrospective Studies , Severity of Illness Index
17.
Intern Med J ; 47(3): 299-306, 2017 Mar.
Article in English | MEDLINE | ID: mdl-27925382

ABSTRACT

BACKGROUND: Increasing the amount of clinical research that occurs in healthcare settings has been identified as an important mechanism to improve healthcare outcomes. While clinicians are key persons in achieving this aim, research participation amongst clinicians is generally limited. AIMS: To identify the factors (barriers and facilitators) influencing clinician research participation and determine how professional culture impacts on these factors. METHODS: Forty clinicians working at a tertiary children's hospital participated in six discipline-specific focus groups. Thematic analysis was performed using an inductive process based in grounded theory. RESULTS: Four major themes (cultural factors, personal factors, resources and solutions) and 16 subthemes were identified. Participants described how the current health system discourages clinician research. They reported that their research participation requires personal sacrifice of their own time; income or career progression. Research participation was seen to compete with other priorities in clinicians' workload and is disadvantaged because of the primacy of clinical work and the lack of immediate tangible benefit from research projects. Solutions suggested by our participants included better alignment of clinical and research goals, improved availability of research mentors and collaborative opportunities. Nurses and allied health professionals reported a changing professional culture that values research. Only doctors identified research participation to be important for career progression. CONCLUSIONS: For clinician research participation to flourish, significant changes in healthcare structure and priorities will be required that result in research becoming more embedded in healthcare delivery. Initiatives to improve collaboration between clinicians and universities may also support these aims.


Subject(s)
Attitude of Health Personnel , Biomedical Research , Hospitals, Pediatric/standards , Pediatrics , Physicians , Adult , Allied Health Personnel , Australia , Cooperative Behavior , Data Collection , Female , Focus Groups , Humans , Male , Middle Aged , Pediatrics/education , Pediatrics/standards , Research Personnel
18.
Emerg Med Australas ; 28(1): 73-7, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26558740

ABSTRACT

OBJECTIVE: This study aimed to determine the reliability of the Abbreviated Westmead Post-traumatic Amnesia Scale (A-WPTAS) in children by examining the impact of age on A-WPTAS performance. METHODS: Participants were typically developing patients with minor illnesses or injuries and/or accompanying siblings aged 5-10 years, attending a children's hospital ED. Exclusion criteria included: (i) a recent traumatic brain injury; (ii) developmental disability; (iii) recent drug administration judged to impact cognition; and/or (iv) non-English speaking background. The A-WPTAS was administered on two occasions separated by approximately 60 min. Logistic regression was used to determine the odds of passing based on age. RESULTS: A total of 125 children completed the A-WPTAS assessments. A-WPTAS pass rates were 36% for 5 year olds, 68% for 6 year olds, and exceeded 90% for 7-10 year olds. Compared with 9 year olds, 5 year olds had significantly lower odds of passing (P = 0.003), a trend that persisted for 6 year olds (P = 0.052). Among 5 and 6 year olds, failure was predominantly due to difficulty with temporo-spatial orientation items. CONCLUSIONS: The A-WPTAS is reliable for use in children aged 7 years and older, while its use in children aged 6 years and under results in an unsatisfactory high false positive rate, limiting its clinical utility. The adult-level performance of children aged 7 years onwards provides strong support for using the tool in the early management of these children with mild traumatic brain injury in Australian EDs.


Subject(s)
Amnesia/diagnosis , Neuropsychological Tests , Age Factors , Amnesia/etiology , Brain Concussion/complications , Brain Concussion/diagnosis , Brain Concussion/psychology , Child , Child, Preschool , Female , Humans , Male , Reproducibility of Results
19.
J Paediatr Child Health ; 47(10): 737-41, 2011 Oct.
Article in English | MEDLINE | ID: mdl-21449904

ABSTRACT

AIM: To describe the clinical presentation and course of children admitted to the paediatric intensive care unit (PICU) with human metapneumovirus (hMPV) infection, and compare them with children admitted to the PICU with respiratory syncytial virus (RSV) infection. METHODS: hMPV was identified by immunofluorescence in 22 children admitted to the PICU over a 16-month period. The medical records of these children were reviewed retrospectively, and their clinical and laboratory data were compared with 66 children admitted to the PICU with positive tests for RSV over the same period. RESULTS: Children admitted to the PICU with hMPV were significantly older than children with RSV (P= 0.003). Children with hMPV presented more commonly with pneumonia or pneumonitis (29% vs. 16%), and less commonly with bronchiolitis (43% vs. 68%) than RSV (P= 0.13). Invasive ventilation was required in 10 patients (48%) with hMPV, and non-invasive ventilation was required in a further 5 (28%), similar to patients with RSV. Children with hMPV were more likely to have an underlying co-morbidity (P= 0.11). CONCLUSIONS: Children admitted to the PICU with hMPV have a similar disease presentation and severity as children admitted with RSV, including some with extremely severe disease who require additional ventilatory or cardiovascular support. Children with hMPV are likely to be older than those with RSV, and more likely to present with pneumonia and less likely to present with bronchiolitis.


Subject(s)
Intensive Care Units, Pediatric , Metapneumovirus/pathogenicity , Paramyxoviridae Infections/physiopathology , Respiratory Syncytial Virus Infections/physiopathology , Respiratory Syncytial Viruses/pathogenicity , Child, Preschool , Female , Humans , Infant , Male , Medical Audit
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