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1.
Paediatr Perinat Epidemiol ; 38(1): 22-30, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38035765

RESUMO

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.


Assuntos
Paralisia Cerebral , Criança , Humanos , Adolescente , Paralisia Cerebral/epidemiologia , Austrália , Sistema de Registros , Armazenamento e Recuperação da Informação , Hospitais
2.
Dev Med Child Neurol ; 66(3): 317-325, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37579020

RESUMO

AIM: To characterize motor disorders in children and young people with cerebral palsy (CP). METHOD: This was a cross-sectional study of 582 children and young people with CP (mean age 9 years 7 months; range 11 months-19 years 9 months; standard deviation 4 years 11 months; 340 males) attending a rehabilitation clinic at a specialized children's hospital (May 2018-March 2020). Data on motor disorders, topography, functional classifications, and non-motor features, such as epilepsy, intellectual disability, and sensory impairments, were collected using the Australian Cerebral Palsy Register CP Description Form. RESULTS: Fifty-five per cent (n = 321) of children and young people with CP presented with multiple motor disorders, often affecting the same limb(s). The most common motor disorders were spasticity and dystonia (50%), spasticity only (36%), and dystonia only (6%), but 18 different combinations were identified, including choreoathetosis, ataxia, and generalized hypotonia with increased reflexes. Children with spasticity only had less severe functional deficits (p < 0.001) and lower rates of associated intellectual disability (p < 0.01) and epilepsy (p < 0.001) than those with both spasticity and dystonia. INTERPRETATION: Multiple motor disorders in children and young people with CP are common and associated with more severe functional impairment. Accurate assessment of motor disorders is essential to guide prognosis and ensure personalized evidence-based interventions. WHAT THIS PAPER ADDS: More than half of children and young people with cerebral palsy presented with multiple motor disorders. Dystonia was identified in 60% of study participants. Dystonia was associated with more severe functional impairments and rates of non-motor features.


Assuntos
Paralisia Cerebral , Distonia , Distúrbios Distônicos , Epilepsia , Deficiência Intelectual , Transtornos Motores , Masculino , Criança , Humanos , Adolescente , Transtornos Motores/etiologia , Distonia/complicações , Estudos Transversais , Deficiência Intelectual/complicações , Deficiência Intelectual/epidemiologia , Austrália/epidemiologia , Distúrbios Distônicos/complicações , Espasticidade Muscular/complicações , Epilepsia/complicações , Epilepsia/epidemiologia
3.
Dev Med Child Neurol ; 2024 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-39039859

RESUMO

AIM: To determine the frequency, type, clinical, and sociodemographic associations of unmet social needs in children with cerebral palsy (CP). METHOD: We conducted a cross-sectional study of parents and carers of children with CP attending a specialist hospital clinic between July and September 2022. Unmet social needs were self-identified using a survey, guided by the WE CARE survey instrument and adapted to the local context. Sociodemographic and clinical data were obtained from medical records. We performed descriptive analysis of participants' unmet social needs, sociodemographic factors, and clinical factors, and examined for associations using a χ2 test and logistic regression. RESULTS: A total of 105 parents and carers completed the survey. Of these, 68 (64.8%) reported one or more unmet social need, with 24 (22.9%) reporting three or more unmet needs. A higher number (three or more) of unmet needs was associated with Gross Motor Function Classification System levels IV and V (odds ratio [OR] = 3.77, 95% confidence interval [CI] = 1.44-9.86) and intellectual disability (OR = 4.63, 95% CI = 1.61-13.31), but were not significant when corrected for neighbourhood socioeconomic disadvantage. The greatest socioeconomic disadvantage was associated with housing concerns (p = 0.002), food (p = 0.026), and financial insecurity (p = 0.02). INTERPRETATION: Unmet social needs are experienced by most families of children with CP. This study highlights the importance of systematic pathways to identify and address unmet social needs.

4.
Dev Med Child Neurol ; 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-39031596

RESUMO

AIM: To co-design a social prescribing intervention (the EPIC-CP programme: Equitable Pathways and Integrated Care in Cerebral Palsy) with children with cerebral palsy (CP), their families, and clinicians to address unmet social needs. METHOD: The study was conducted (August 2021 to March 2023) at the paediatric rehabilitation departments of the three tertiary paediatric hospitals in New South Wales, Australia. Eligible participants attended or worked at one of the departments, including children with CP, parents/caregivers, and clinicians. Mixed-methods co-design was used in intervention co-production and prototyping. The project was overseen by research advisors with lived experience of CP. RESULTS: More than 200 participants contributed to the co-design research. Families experienced a substantial burden of unmet social needs. Co-designed interventions involved systematic identification of unmet social needs with (1) targeted community resources and (2) engagement with a 'community linker' who supported children/young people and their families to access health, education, and social services that matched their identified needs and preferences. Research participants co-developed the programme logic model and prototype. This was piloted in research action cycles and iteratively refined until consensus was achieved. INTERPRETATION: We co-designed a social prescribing programme responsive to the needs of its end-users and purposefully developed to be embedded in the Australian health setting. A pilot randomized controlled trial will further evaluate this intervention.

5.
Artigo em Inglês | MEDLINE | ID: mdl-38973618

RESUMO

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.

6.
Dev Med Child Neurol ; 2023 Nov 10.
Artigo em Inglês | MEDLINE | ID: mdl-37946594

RESUMO

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.

7.
Child Care Health Dev ; 49(4): 760-768, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36513964

RESUMO

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.


Assuntos
Paralisia Cerebral , Rizotomia , Humanos , Rizotomia/métodos , Qualidade de Vida , Objetivos , Austrália , Canadá , Paralisia Cerebral/reabilitação , Resultado do Tratamento
8.
Cytotherapy ; 24(9): 931-939, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35193825

RESUMO

Cerebral palsy (CP) is a nonprogressive neurological disorder and the most common physical disability of childhood. There is no cure for CP, but stem cells have the potential to improve brain injury and hence function. This phase 1 clinical trial investigated the safety of the intravenous infusion of full-matched sibling cord blood cells for children with CP aged 1 to 16 years. Preliminary efficacy outcomes were also investigated. Twelve participants received 12/12 HLA-matched sibling cord blood cell infusions. One treatable serious adverse reaction to cryoprotectant was observed, and no adverse reactions occurred beyond 24 h after infusion. Gross motor function measure (GMFM-66) scores did not improve compared with baseline beyond what could be expected from developmental levels, and participants had varied changes in the Quality of Upper Extremity Skills Test (QUEST) and Vineland Adaptive Behavior Scales (VABS-II) scores. In conclusion, matched sibling cord blood cell infusion for children with CP is relatively safe when conducted in an appropriate facility. Australian and New Zealand Clinical Trials Registry (ACTRN12616000403437) and Clinicaltrials.gov (NCT03087110).


Assuntos
Paralisia Cerebral , Transplante de Células-Tronco de Sangue do Cordão Umbilical , Adolescente , Austrália , Células Sanguíneas , Paralisia Cerebral/terapia , Criança , Pré-Escolar , Transplante de Células-Tronco de Sangue do Cordão Umbilical/efeitos adversos , Sangue Fetal , Humanos , Lactente , Irmãos
9.
Paediatr Perinat Epidemiol ; 36(5): 726-737, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35172017

RESUMO

BACKGROUND: Medicine prescribing for children is impacted by a lack of paediatric-specific dosing, efficacy and safety data for many medicines. OBJECTIVES: To estimate the prevalence of medicine use among children and the rate of 'off-label' prescribing according to age at dispensing. METHODS: We used population-wide primarily outpatient dispensing claims data for 15% of Australian children (0-17 years), 2013-2017 (n = 840,190). We estimated prescribed medicine use and 'off-label' medicine use according to the child's age (<1 year, 1-5 years, 6-11 years, 12-17 years) defined as medicines without age-appropriate dose recommendations in regulator-approved product information. Within off-label medicines, we also identified medicines with and without age-specific dose recommendations in a national prescribing guide, the Australian Medicines Handbook Children's Dosing Companion (AMH CDC). RESULTS: The overall dispensing rate was 2.0 dispensings per child per year. The medicines with the highest average yearly prevalence were systemic antibiotics (435.3 per 1000 children), greatest in children 1-5 years (546.9 per 1000). Other common medicine classes were systemic corticosteroids (92.7 per 1000), respiratory medicines (91.2 per 1000), acid-suppressing medicines in children <1 year (47.2 per 1000), antidepressants in children 12-17 years (40.3 per 1000) and psychostimulants in children 6-11 years (27.0 per 1000). We identified 12.2% of dispensings as off-label based on age, but 66.3% of these had age-specific dosing recommendations in the AMH CDC. Among children <1 year, off-label dispensings were commonly acid-suppressing medicines (35.5%) and topical hydrocortisone (33.1%); in children 6-11 years, off-label prescribing of clonidine (16.0%) and risperidone (13.1%) was common. Off-label dispensings were more likely to be prescribed by a specialist (21.7%) than on-label dispensings (7.5%). CONCLUSIONS: Prescribed medicine use is common in children, with off-label dispensings for medicines without paediatric-specific dosing guidelines concentrated in classes such as acid-suppressing medicines and psychotropics. Our findings highlight a need for better evidence to support best-practice prescribing.


Assuntos
Antibacterianos , Uso Off-Label , Austrália/epidemiologia , Criança , Humanos , Lactente , Padrões de Prática Médica , Prevalência
10.
Dev Med Child Neurol ; 64(12): 1507-1516, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35665493

RESUMO

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.


Assuntos
Toxinas Botulínicas Tipo A , Criança , Masculino , Humanos , Adolescente , Toxinas Botulínicas Tipo A/uso terapêutico , Biorretroalimentação Psicológica , Dor/etiologia , Ansiedade/etiologia , Ansiedade/terapia , Manejo da Dor
11.
Dev Med Child Neurol ; 64(3): 364-371, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34553772

RESUMO

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.


Assuntos
Atividades Cotidianas , Paralisia Cerebral/complicações , Dor/fisiopatologia , Dor/psicologia , Funcionamento Psicossocial , Sistema de Registros , Adolescente , Criança , Feminino , Humanos , Masculino , New South Wales , Dor/etiologia , Manejo da Dor , Medição da Dor , Pesquisa Qualitativa
12.
Dev Med Child Neurol ; 64(9): 1106-1113, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35244200

RESUMO

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.


Assuntos
Paralisia Cerebral , Adolescente , Instituições de Assistência Ambulatorial , Agendamento de Consultas , Austrália , Paralisia Cerebral/terapia , Criança , Feminino , Humanos , Masculino , Estudos Retrospectivos
13.
Arch Phys Med Rehabil ; 103(8): 1628-1637, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34968439

RESUMO

OBJECTIVE: To systematically review and synthesize evidence of determinants associated with hospital-based health service utilization among individuals with cerebral palsy (CP). DATA SOURCES: Electronic databases MEDLINE, Embase, APA Psycinfo were searched from January 2000 to April 2020. STUDY SELECTION: Observational studies were included that described people with CP, reported quantitative measures of hospital-based health service utilization (inpatient, outpatient, emergency department), and based in high-income countries. We excluded studies that included only subsets of people with CP, or those that only reported therapy service utilization. DATA EXTRACTION: After initial screen, 2 reviewers reviewed full texts for inclusion and performed data extraction and risk of bias assessment using the Newcastle-Ottawa scale. Determinants of health service utilization were identified and categorized using the Andersen behavioral model. DATA SYNTHESIS: Seventeen studies met inclusion criteria. Study quality was high. Twenty-six determinants were reported across 8 Andersen model characteristics. Individual predisposing factors such as sex showed no difference in health service utilization; inpatient admissions decreased with increasing age during childhood and was lower in adults. Increased health service utilization was associated with "individual need" including severe gross motor disability, epilepsy, developmental/ intellectual disability and gastrostomy-use across inpatient, outpatient and emergency department settings. There was little information reported on socio-demographic and health system contextual determinants. CONCLUSIONS: CP health service utilization is associated with age, severity and comorbidities. Improved understanding of determinants of health service utilization can support health service access for people with CP.


Assuntos
Paralisia Cerebral , Pessoas com Deficiência , Transtornos Motores , Adulto , Hospitalização , Hospitais , Humanos
14.
Child Care Health Dev ; 47(6): 844-850, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34251700

RESUMO

BACKGROUND: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention to reduce spasticity in children with cerebral palsy. Parents researching SDR for their child may be influenced by framing of SDR in news media articles they read. This study examined framing of SDR in English-language news media. METHODS: Content analysis of English-language news media articles including the search term 'rhizotomy' in the Factiva database published July 2015 to July 2018 in online or print form in Canada, New Zealand, Australia, United States of America and the United Kingdom. RESULTS: One hundred and eighty-six articles were identified describing 91 different children (45 male), almost all with cerebral palsy, median age 4 years old. One hundred and twenty-six articles were written prior to surgery; in many articles, SDR surgery involved travel overseas and/or fundraising. SDR was described universally in positive terms with little discussion of risks. Content of articles variably included the specialized nature of SDR, parental frustration with their local health system and their hope for positive outcomes. There was geographical variation in both numbers of articles and content. CONCLUSIONS: SDR is a common focus in cerebral palsy news media articles in some countries. Framing in these articles supports SDR as a beneficial and specialized procedure and may lead families to believe they need to work outside their local health systems. As news media are likely an important influence on families' attitudes to SDR, clinicians should be aware of this influence.


Assuntos
Paralisia Cerebral , Rizotomia , Paralisia Cerebral/cirurgia , Criança , Pré-Escolar , Humanos , Idioma , Masculino , Espasticidade Muscular , Resultado do Tratamento
15.
Paediatr Respir Rev ; 33: 16-23, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31987717

RESUMO

Cerebral palsy (CP) is associated with a high burden of comorbid respiratory disease subsequent to multiple risk factors associated with increasing levels of disability. Correspondingly, respiratory disease is the leading cause of death in CP, including amongst young people who are transitioning or who have just transitioned between paediatric and adult healthcare services. Therefore, consideration of both preventive and therapeutic respiratory management is integral to transition in patients with CP, as summarised in this review.


Assuntos
Paralisia Cerebral/terapia , Epilepsia/terapia , Cifose/terapia , Pneumologia , Doenças Respiratórias/terapia , Escoliose/terapia , Transição para Assistência do Adulto , Cuidado Transicional , Planejamento Antecipado de Cuidados , Paralisia Cerebral/complicações , Paralisia Cerebral/fisiopatologia , Epilepsia/complicações , Refluxo Gastroesofágico/complicações , Refluxo Gastroesofágico/terapia , Humanos , Cifose/complicações , Ventilação não Invasiva , Pneumonia Aspirativa/etiologia , Pneumonia Aspirativa/prevenção & controle , Doenças Respiratórias/etiologia , Doenças Respiratórias/prevenção & controle , Escoliose/complicações , Apneia Obstrutiva do Sono/etiologia , Apneia Obstrutiva do Sono/terapia
16.
Arch Phys Med Rehabil ; 101(2): 213-219, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31521713

RESUMO

OBJECTIVE: To determine the prevalence, interference, and management of acute and chronic pain among youth with cerebral palsy (CP) aged 5-18 years attending outpatient rehabilitation services. DESIGN: A cross-sectional study using the Faces Pain Scale-Revised, Patient Reporting Outcomes Measurement Information System Pediatric Pain Interference Scale, and the Cerebral Palsy Quality of Life questionnaire. Where children were unable to self-report, parent or caregiver proxy was obtained. SETTING: Outpatient rehabilitation. PARTICIPANTS: Participants (N=280) with CP aged 5-18 years and their parent or caregiver. Self-report was obtained by 45.7% (n=128) and proxy-report was obtained by 54.3% (n=152) of the cohort. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Presence or absence of acute pain and chronic pain. Secondary measures were pain intensity, pain interference, pain management, and quality of life. RESULTS: Acute pain and chronic pain were reported by 67.1% and 31.4% of participants, respectively. Of those reporting acute pain, 42% also experienced chronic pain. Factors that increased the odds of chronic pain were: predominately dyskinesia (odds ratio [OR]=3.52; 95% confidence interval [CI], 1.64-7.55); mixed spasticity-dyskinesia (OR=1.93; 95% CI, 1.07-3.47); bilateral involvement (OR=3.22; 95% CI, 1.844-5.61) and Gross Motor Function Classification System level IV (OR=2.32; 95% CI, 1.02-5.25), and V (OR=3.73; 95% CI, 1.70-8.20). Pain frequently interferes with sleep, attention, ability to have fun, and quality of life. Short-acting pharmacologic analgesics, thermotherapy, hydrotherapy, and massage were commonly used for pain management. CONCLUSIONS: Routine screening for pain is critical for early identification and intervention. Multimodal interventions are needed to address the biopsychosocial model of pain, and should be tailored for all abilities across the CP spectrum.


Assuntos
Paralisia Cerebral/epidemiologia , Manejo da Dor/métodos , Dor/epidemiologia , Qualidade de Vida , Doença Aguda , Adolescente , Fatores Etários , Atenção/fisiologia , Paralisia Cerebral/fisiopatologia , Criança , Pré-Escolar , Dor Crônica/epidemiologia , Dor Crônica/fisiopatologia , Estudos Transversais , Discinesias/epidemiologia , Feminino , Humanos , Masculino , Destreza Motora , Espasticidade Muscular/epidemiologia , Dor/fisiopatologia , Fatores Sexuais , Sono/fisiologia , Fatores Socioeconômicos
17.
Intern Med J ; 50(9): 1138-1141, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32929823

RESUMO

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.


Assuntos
Toxinas Botulínicas Tipo A , Paralisia Cerebral , Transição para Assistência do Adulto , Adolescente , Adulto , Austrália , Território da Capital Australiana , Paralisia Cerebral/tratamento farmacológico , Paralisia Cerebral/epidemiologia , Criança , Humanos , New South Wales/epidemiologia
18.
Mov Disord ; 34(5): 637-656, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30919519

RESUMO

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.


Assuntos
Doenças Autoimunes do Sistema Nervoso/terapia , Tomada de Decisão Clínica , Estimulação Encefálica Profunda , Dietoterapia , Terapia Genética , Fatores Imunológicos/uso terapêutico , Erros Inatos do Metabolismo/terapia , Transtornos dos Movimentos/terapia , Agonistas alfa-Adrenérgicos/uso terapêutico , Anticonvulsivantes/uso terapêutico , Doenças Autoimunes do Sistema Nervoso/complicações , Toxinas Botulínicas Tipo A/uso terapêutico , Canabinoides/uso terapêutico , Terapia Baseada em Transplante de Células e Tecidos , Quelantes/uso terapêutico , Ácido Quenodesoxicólico/uso terapêutico , Criança , Suplementos Nutricionais , Dopaminérgicos/uso terapêutico , Terapia de Reposição de Enzimas , GABAérgicos/uso terapêutico , Fármacos Gastrointestinais/uso terapêutico , Glucocorticoides/uso terapêutico , Humanos , Imunoglobulinas Intravenosas/uso terapêutico , Erros Inatos do Metabolismo/complicações , Inibidores da Monoaminoxidase/uso terapêutico , Transtornos dos Movimentos/etiologia , Fármacos Neuromusculares/uso terapêutico , Compostos Organofosforados/uso terapêutico , Pterinas/uso terapêutico
20.
Med J Aust ; 210(3): 129-135, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30739332

RESUMO

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.


Assuntos
Paralisia Cerebral , Paralisia Cerebral/classificação , Paralisia Cerebral/diagnóstico , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/terapia , Criança , Distonia , Humanos , Espasticidade Muscular , Guias de Prática Clínica como Assunto , Qualidade de Vida
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