ABSTRACT
AIM: To describe the distribution of neuroimaging patterns in a term/late preterm population-based cohort with cerebral palsy (CP), ascertain associations between neuroimaging patterns and neonatal well-being, estimate the proportion with antenatal or perinatal timing of neuropathology, and apply this information to the understanding of common mechanisms of brain injury and causal pathways. METHOD: The cohort for this observational study comprised 1348 persons born between 1999 and 2017 in Victoria, Australia. Using algorithms designed for the study, neonatal well-being and timing of brain injury were tabulated for the whole cohort and across neuroimaging patterns and birth epochs. RESULTS: Clinical and demographic profiles, neonatal well-being, and timing of brain injury differed across neuroimaging patterns. An estimated 57% of the cohort had a complicated neonatal period. Timing of brain injury was antenatal in 57% and perinatal in 41%. A decrease in the relative proportions of perinatal timing of brain injury was observed over a period when the rates of CP in live births at term decreased. INTERPRETATION: This study begins to bridge the knowledge gap about causation in CP, moving towards better description of the main mechanisms of brain injury and their contribution within CP cohorts, and facilitating the ability to monitor changes over time and the success of preventive measures. WHAT THIS PAPER ADDS: In a population-based, term/late preterm cohort with cerebral palsy, 57% had a complicated neonatal period. In the same cohort, 57% had presumed antenatal timing of brain injury. The relative proportion with perinatal injury decreased over time.
Subject(s)
Cerebral Palsy , Humans , Cerebral Palsy/etiology , Cerebral Palsy/physiopathology , Female , Infant, Newborn , Male , Victoria/epidemiology , Brain Injuries/complications , Brain Injuries/etiology , Cohort Studies , Infant, Premature , Neuroimaging , Time Factors , Gestational AgeABSTRACT
BACKGROUND: Fetoscopic laser coagulation of placental anastomoses reverses the pathological process in twin-to-twin transfusion syndrome, thereby increasing survival, but there are a paucity of studies addressing long-term neurodevelopmental outcome of survivors. This study aimed to ascertain the presence of neurodevelopmental disabilities in child survivors of monochorionic pregnancies managed by placental laser photocoagulation in the Australian state of Victoria. METHODS: All pregnancies undergoing placental laser photocoagulation with the Victorian Fetal Therapy Service between 2006-2017 were included. Information on each surviving child, including demographics, perinatal course, and developmental progress was collected from parents, and consent was sought to complete the Child Behaviour Checklist. Interviewers evaluated whether this information was consistent with a diagnosis of any of 14 neurodevelopmental conditions. A three-tiered outcome measure was allocated for each child: (1) unimpaired or developmentally normal, (2) mild or moderate neurological impairment, or (3) severe neurological impairment. Clinical predictors for adverse outcome were identified. RESULTS: Of 116 pregnancies (113 twin, 3 triplet), 96 (83%) resulted in 1 + surviving fetuses. 57/113 (50%) twin pregnancies resulted in 2 survivors, 36 (32%) in 1 survivor, and 20 (18%) in no survivors. Of the 235 fetuses, 154 (65.5%) survived to follow-up. Survival increased from 59% in 2006-2008 to 73% in 2015-2017. 90/154 (58%) survivors were followed up at a mean age of 7.5 [SD 3.0] years. Based on parental interview and Child Behaviour Checklist data, 28/90 (31%) participants were assessed as having neurodevelopmental impairment, 27 of mild-moderate severity and 1 severe. Speech/language disorders, attention deficit (hyperactivity) disorders, and fine motor impairment were most common. Neonatal length of stay conferred the highest risk of impairment. CONCLUSION: Substantial variation exists between fetal therapy services in the type and length of neonatal follow-up following fetoscopic laser coagulation, contributing to a lack of data on long-term outcomes. The findings from this study support increasingly urgent calls to undertake systematic and sustained follow-up of fetoscopic laser coagulation survivors until school age. Information from this study may assist parents in their decision-making when offered fetal surgery. Importantly, it highlights a group for targeted surveillance and early intervention.
Subject(s)
Fetofetal Transfusion , Infant, Newborn , Child , Pregnancy , Humans , Female , Fetofetal Transfusion/surgery , Placenta/surgery , Australia , Laser Coagulation/methods , Pregnancy, Twin , Survivors , Lasers , Gestational AgeABSTRACT
AIM: To provide an updated description of the rates, trends, and predictors of mortality of individuals with cerebral palsy (CP), born in the Australian state of Victoria between 1970 and 2012. METHOD: Data were extracted for 4807 individuals (2091 females; 2716 males). The probability of survival to 30th June 2017 was calculated using the Kaplan-Meier method. Mortality rates were calculated per 1000 person-years using age strata and compared with population mortality rates to produce mortality ratios. Cox proportional hazards regression was used to calculate hazard ratios for selected demographic and clinical characteristics and to estimate the effect of birth epoch on 15-year survival. RESULTS: There were 666 recorded deaths. Compared to the general population, mortality was higher for all persons with CP and highest for children aged 1 to 15 years (45-62 times). We observed 35% improvement in the probability of survival to 15 years for births in the 2000s relative to the 1970s (hazard ratio 0.65, 95% confidence interval [CI] 0.49, 0.86), but only 4% improvement for the subgroup with complex CP (hazard ratio 0.96, 95% CI 0.69, 1.33). INTERPRETATION: The observed improvements in survival for those born in the 2000s is likely related predominantly to a proportional reduction in complex CP within the cohort. WHAT THIS PAPER ADDS: Length of survival improved for Australians with cerebral palsy (CP) born this millennium. Improved survival was mainly because of a proportional reduction in complex CP. A small improvement in length of survival was seen for children with complex CP.
Subject(s)
Cerebral Palsy , Child , Male , Female , Humans , Victoria , Longitudinal Studies , Cerebral Palsy/epidemiology , Proportional Hazards ModelsABSTRACT
AIM: This 10-year follow-up study examined cognitive change in a cohort of children with cerebral palsy from preschool to adolescence at the group and individual levels. METHODS: The Wechsler Preschool and Primary Scale of Intelligence was administered to 80 children with cerebral palsy (mean = 4 years 6 months, standard deviation = 7 months) at baseline (Time 1). At 10-year follow-up (Time 2), 28 adolescents (mean = 14 years 6 months, standard deviation = 9 months) returned for assessment with the Wechsler Intelligence Scale for Children. Motor-free intelligence quotient (IQ) scores were calculated and paired-samples t-tests and the Reliable Change Index (RCI) were used to investigate change in IQ over time. RESULTS: At the group level, nonverbal IQ scores declined significantly. At the individual level, RCI indicated nine and 11 children showed a clinically significant decline in Full Scale IQ (FSIQ) and nonverbal IQ scores, respectively. Decline in FSIQ was related to a history of seizures whereas decline in nonverbal IQ was associated with higher initial IQ. CONCLUSION: Cognitive abilities in children with cerebral palsy evolve over time and selective deficits may not be observable until a later age, highlighting the importance of repeated cognitive assessment throughout childhood and adolescence.
Subject(s)
Cerebral Palsy , Adolescent , Cerebral Palsy/diagnosis , Child , Child, Preschool , Follow-Up Studies , Humans , Intelligence , Intelligence Tests , Wechsler ScalesABSTRACT
PURPOSE: Fathers in families raising children with disabilities are under-researched. Fathers' perspectives can be better accommodated in childhood disability services that operate on a family-centred paradigm if their perspectives are understood. This study aimed to investigate the perspectives of fathers on caring and family life, work, and health. METHODS: A mixed-methods design with an online questionnaire included open-ended questions and three instruments: Depression Anxiety Stress Scales (DASS); Health Promoting Activities Scale (HPAS-M); Fathers of Children with Developmental Challenges (FCDC) Scale. RESULTS: Fathers (n = 33) reported high depressive (58%), anxiety (37%), and stress symptoms (61%). Fathers reported low participation in health-promoting activity with less than weekly: planning health activities (58%); solo physical activity (26%); social activity (3%); time relaxing (16%). Sixty-four percent worked full-time, although work was reported to be challenged by family responsibilities. Fathers described directly caring for their children although service interactions were low and delegated to mothers. CONCLUSIONS: Fathers in this study reported stress, mental health issues, and low participation in healthy activity. Fathers experienced challenges related to career progression and job choices due to family responsibilities. Providing individualised and responsive support to fathers of a child with a disability would better support the family unit.IMPLICATIONS FOR REHABILITATIONFathers of children with a disability in this study experienced high mental health symptoms.Fathers were involved with their child's care at home but had low service interactions suggesting that service providers need to discover new ways to better engage fathers.Fathers experienced challenges to participation in paid work secondary to care responsibilities for their child with a disability and resulting needs of their family.Services that better support fathers are important to promote better health and wellbeing and support families.
Subject(s)
Health Status , Mental Health , Anxiety , Child , Female , Humans , Mothers/psychology , Surveys and QuestionnairesABSTRACT
Objective: To examine the influence of subtests that require fine motor responses on measures of intellectual ability, and compare three approaches to minimizing motor demands while assessing cognitive abilities in adolescents with cerebral palsy (CP) to the traditional method of the Wechsler Intelligence Scale for Children - Fifth edition (WISC-V). Method: Seventy adolescents with CP (M = 14 years 6 months, SD = 10 months) who were able to provide either a verbal or point response were assessed using the WISC-V administered via Q-interactive. The pencil-to-paper version of Coding was also administered. Performance on Block Design and pencil-to-paper Coding was compared to Visual Puzzles and Coding on Q-interactive, respectively. Full Scale IQ (FSIQ) scores derived according to the Traditional method of the WISC-V were compared to alternative estimates of FSIQ derived according to the Q-interactive, Nonmotor, and Motor-free methods, which minimized motor demands. Results: An additional 7-12% of participants were able to respond to Visual puzzles and Coding on Q-interactive compared to Block Design and pencil-to-paper Coding, respectively, and performance was marginally but significantly better. For 54 adolescents (Gross Motor Function Classification System (GMFCS) Level I-III) who were able to obtain FSIQ scores, the Traditional method underestimated FSIQ by 3-6 points compared to the alternative methods and the difference was most pronounced for those with more severe CP as measured by the GMFCS. Conclusion: Adolescents with CP are at an inherent disadvantage when cognitive ability is assessed using the Traditional method of the WISC-V. Findings suggest clinicians should employ the Nonmotor or Motor-free methods when assessing IQ in adolescents with CP.
Subject(s)
Cerebral Palsy , Adolescent , Cerebral Palsy/complications , Cerebral Palsy/psychology , Child , Humans , Neuropsychological Tests , Wechsler ScalesABSTRACT
Background: Published evidence to date suggests that sleep problems are common in children with cerebral palsy (CP). This qualitative study is a follow up to a previously published quantitative phase on the experience and impact of sleep problems in this population. Aims: The aim of this study was to explore the experience and impact of sleep disturbance and seeking of sleep solutions for parents of school aged children with CP. Materials and Methods: Semi-structured 19 qualitative interviews were conducted with parents of children with CP aged 6-12 years. Interview data were transcribed verbatim and the thematic analysis techniques by Braun and Clarke was used to identify themes. Results: Thematic analysis identified 7 themes: (1) My Child Doesn't Fit into the Box, (2) A Mother's Ears are Always On, (3) Sleep Disturbance is like Water Torture, (4) Sleep is One of Many Spot Fires, I Put it on the Backburner, (5) Luck, Money or Jumping Up and Down, (6) There is Never One Silver Bullet and (7) Help: The Earlier the Better. The key finding was that parents of children with CP often described their child's needs being distinct from what is provided by systems and services. Conclusion: Parents face significant challenges sourcing effective sleep solutions for their child with CP. Sleep is often not a priority for either the parent or the clinician as other health problems take precedence. Parents reflected that early sleep intervention for their child was or would have been helpful. The barriers and facilitators to sleep care identified in this study should be used to inform clinical change in care for children with CP. Sleep needs to be prioritized in healthcare for children.
ABSTRACT
Anterior drooling is common in children with cerebral palsy (CP) and poses significant risks to the child's health. Causes of drooling include oro-motor dysfunction, inefficient swallowing and reduced sensation in the orofacial musculature. Behavioural interventions are frequently recommended to reduce drooling; however, this is in the absence of high-quality research evidence. This paper describes a protocol for evaluating the effectiveness of the Lee Silverman Voice Treatment LOUD (LSVT LOUD®) in reducing drooling; and optimising speech and swallowing in a group of children with CP. A structured and systematic visual analysis supplemented with statistical analyses will be used to analyse the data. The risk of bias in n-of-1 trials (RoBiNT) Scale [1] guided the design and implementation of the study.
ABSTRACT
BACKGROUND/AIM: Mothers caring for their child or adult with a developmental disability can experience mental health disparity. Protective factors such as healthy behaviours are under-researched. This study investigated relationships between mental health, healthy behaviours, and disability factors. METHODS: The cross-sectional online survey included: Depression Anxiety Stress Scales (DASS); Family Empowerment Scale (FES); Health Promoting Activities Scale (HPAS); and a measure of childhood quality of life (QoL). RESULTS: All mothers were raising offspring (aged 3-36 years) with a developmental disability. Fifty-two percent of mothers (N = 81) had a mental health diagnosis. DASS scores were elevated for depression (58 %), anxiety (52 %) and stress (68 %). Mothers participated in health promoting activities infrequently and reported low satisfaction with community health-supporting facilities. Depressive symptoms, maternal empowerment and two indicators of child-related QoL explained 29.7 % of the variance in healthy behaviours. Depressive symptoms were the most important predictor of lack of health promoting behaviours. CONCLUSIONS: Better mental health predicted more frequent participation in health promoting behaviour. Future research might explore the extent to which health promoting behaviours protect mental health. Service changes including family health focused services, and custom designed health promotion or coaching programs may improve the health behaviours of mothers with high care responsibilities.
Subject(s)
Mothers , Quality of Life , Anxiety Disorders , Child , Cross-Sectional Studies , Depression/epidemiology , Developmental Disabilities/epidemiology , Female , HumansABSTRACT
BACKGROUND: The most commonly used intelligence tests - the Wechsler Scales - do not provide standardised procedures for assessing children with motor impairment, and as a result, may underestimate the intelligence quotient (IQ) of young people with CP. AIMS: To characterise a motor-free cognitive profile of adolescents with CP using the Wechsler Intelligence Scale for Children - Fifth edition (WISC-V) and explore the influence of clinical factors on cognitive abilities. METHODS AND PROCEDURE: The WISC-V was used to assess cognitive abilities in 70 adolescents (M = 14 years 6 months, SD = 10 months). Sixty-six adolescents (Gross Motor Function Classification System (GMFCS) Level I, n = 26 ; II, n = 23; III, n = 15; IV, n = 1; V, n = 1) obtained either a Motor-free IQ or index score using the motor-free method. OUTCOMES AND RESULTS: MFIQ and index scores fell below the normative data and rates of borderline and impaired cognitive abilities were significantly higher in the CP group. Scores showed an uneven cognitive profile with a relative strength in verbal abilities. Severity of motor impairment and small for gestational age (SGA) were associated with lower IQ scores. A history of seizures was related to lower verbal abilities. CONCLUSIONS AND IMPLICATIONS: Cognitive abilities of adolescents with CP are significantly below expectation compared to normative data. Severity of motor impairment, SGA, and seizures need to be recognised by health professionals as risk factors for cognitive impairment. A substantial proportion of adolescents showed borderline cognitive abilities, constituting a group with CP which are relatively neglected in the literature.
Subject(s)
Cerebral Palsy , Cognitive Dysfunction , Adolescent , Child , Cognition , Humans , Intelligence Tests , Wechsler ScalesABSTRACT
Purpose: In the absence of evidence-based guidelines, this study sought to understand current speech-language pathologists' (SLPs) practice when treating drooling in children with a neurodisability.Method: Descriptive research using cross-sectional survey methodology. Online survey methods were used to obtain specific information on Australian SLPs' self-reported assessment and treatment practices relative to working with children with neurodisability who drool. Questions focussed on level of expertise, treatment approaches and barriers to evidence-based practice (EBP) in this area. Participants were sourced through three targeted associations/organisations. Data were analysed using descriptive and non-parametric statistics.Result: Participants were Australian SLPs who had recent experience working with children with neurodisability who drool (n = 68). They favoured informal rather than formal methods for assessment. Preferred treatment techniques included behavioural intervention methods (46-53%) and modifying positioning (43.3%). Client suitability dominated reasoning regarding treatment selection (60%) with 57% of SLPs reporting EBP barriers.Conclusion: Drooling was perceived to be a complex practice area for which SLPs desire additional education. Despite availability, valid and reliable assessments of drooling were not commonly used. Clinicians have limited evidence to support their practice: further research is needed to establish evidence-based treatments for drooling.
Subject(s)
Neurodevelopmental Disorders/complications , Sialorrhea/etiology , Sialorrhea/therapy , Speech-Language Pathology/methods , Australia , Cross-Sectional Studies , Humans , Practice Guidelines as Topic , Surveys and QuestionnairesABSTRACT
AIM: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Subject(s)
Cerebral Palsy , Sleep Wake Disorders , Cerebral Palsy/complications , Child , Humans , Parents , Prospective Studies , Sleep Wake Disorders/epidemiology , Sleep Wake Disorders/etiology , Surveys and QuestionnairesABSTRACT
AIM: We explored the experiences of parents of children with cerebral palsy (CP) when engaging in hip surveillance for their child and aimed to identify the barriers and facilitators they encounter. METHODS: We conducted a pragmatic qualitative study through five focus groups conducted with 23 parents and primary care givers of young people with cerebral palsy. A semi-structured topic guide was used to facilitate discussion. Recordings were transcribed verbatim and transcripts analysed using content analysis. RESULTS: Six major categories emerged: (i) hip surveillance is a shared responsibility; (ii) knowledge is empowering; (iii) hip surveillance should be proactive rather than reactive; (iv) consistency and support from health professionals is valuable; (v) good communication is crucial; and (vi) challenges associated with having an X-ray may not be appreciated. Participants made recommendations related to: service model enhancements, information provision and improving both communication and the experience of having an X-ray. CONCLUSION: Despite having a good understanding of the need and importance of hip surveillance for their child, several barriers to parent engagement exist. Findings will inform the implementation of a family-centred model for hip surveillance and may be relevant to those undertaking or planning the implementation of hip surveillance in other areas.
Subject(s)
Cerebral Palsy , Adolescent , Child , Communication , Humans , Parents , Radiography , X-RaysABSTRACT
AIM: To determine: the effectiveness of three anticholinergic medications in reducing drooling in children with developmental disabilities (such as cerebral palsy, intellectual disability, and autism spectrum disorder), the frequency and nature of side effects, and their impact on treatment discontinuation. METHOD: After prescription of benzhexol hydrochloride, glycopyrrolate, or scopolamine patches at a tertiary saliva control clinic, all carers of 110 consecutive, eligible patients were recruited over a 5-year period. They provided data for 52 weeks, or until drug discontinuation, on compliance, drooling, adverse effects, and reasons for cessation. We evaluated and compared best drooling response, side effects, and drug cessation rates using survival analysis, and the effect of baseline variables on the discontinuation rate using proportional hazards regression. RESULTS: Among 110 participants (71 males, 39 females; mean age 8y 5mo [SD 4y 3mo], range 1y 11mo-18y 11mo), benzhexol, glycopyrrolate, and scopolamine were prescribed 81, 62, and 17 times respectively, with respective response rates of 85%, 75%, and 65%. Poor head control and poor oromotor function were predictive of poor response. Side effects frequently prompted drug cessation in males more than females (hazard ratio 1.8 [95% confidence interval 1.0-3.2], p=0.048). Glycopyrrolate had the fewest side effects. INTERPRETATION: Benzhexol, glycopyrrolate, and scopolamine reduce drooling, but improvement is offset by adverse side effects. Overall, glycopyrrolate performs best. WHAT THIS PAPER ADDS: In drooling, glycopyrrolate produced the greatest improvement with fewer side effects compared with benzhexol and scopolamine. Poor head control and poor oromotor function were associated with poor response. Medication side effects were common and often led to treatment discontinuation. Behavioural issues instigated cessation of benzhexol more often in males than females.
MEDICAMENTOS ANTICOLINÉRGICOS PARA REDUCIR EL BABEO EN NIÑOS CON TRASTORNOS DEL DESARROLLO: OBJETIVO: Determinar: la eficacia de tres medicamentos anticolinérgicos en la reducción del babeo en niños con trastornos del desarrollo (como parálisis cerebral, discapacidad intelectual y el trastorno del espectro autista), la frecuencia y la naturaleza de los efectos secundarios y su impacto en la interrupción del tratamiento. MÉTODO: Después de la prescripción de trihexifenidilo, glicopirrolato o parches de escopolamina en una clínica terciaria de control de saliva, fueron reclutados los cuidadores de 110 pacientes elegibles durante un período de 5 años. Estos proporcionaron datos sobre el cumplimiento, babeo, efectos adversos y razones para el cese, durante 52 semanas o hasta la interrupción del medicamento. Se evaluó y comparó la mejor respuesta al babeo, efectos secundarios y tasas de cese de drogas, utilizando el análisis de supervivencia y el efecto de las variables basales en la tasa de interrupción utilizando el modelo de riesgos proporcionales. RESULTADOS: Entre 110 participantes (71 varones y 39 mujeres; edad promedio de 8 años 5 meses [DE 4 años 3 meses], con rango de 1 año 11 meses - 18 años 11 meses), se prescribió trihexifenidilo, glicopirrolato y escopolamina, 81, 62, y 17 veces respectivamente, con tasas de respuesta respectivas de 85%, 75% y 65%. El pobre control cefálico y la mala función oromotora eran predictores de una respuesta deficiente. Los efectos secundarios provocaron el cese de las drogas con más frecuencia en los varones que en las mujeres (relación de riesgo 1,8 [intervalo de confianza del 95% 1,0-3,2], p 0,048). Glicopirrolato tuvo el menor número de efectos adversos INTERPRETACIÓN: El trihexifenidilo, el glicopirrolato y la escopolamina reducen el babeo, sin embargo, la mejora se contrarresta por los efectos secundarios. En general, el glicopirrolato tiene mejores resultados.
MEDICAÇÕES ANTICOLINÉRGICAS PARA REDUZIR SIALORRÉIA EM CRIANÇAS COM DEFICIÊNCIAS DESENVOLVIMENTAIS: OBJETIVO: Determinar: a efetividade de três medicações anticolinérgicas na redução da sialorréia em crianças com deficiências desenvolvimentais (como paralisia cerebral, deficiência intelectual, e transtorno do espectro autista), a frequência e natureza dos efeitos colaterais, e seu impacto na descontinuação do tratamento. MÉTODO: Após prescrição de hidroclorido benzexol, glicopirrolato, ou faixas de escopolamina em uma clínica terciária de controle da salivação, todos os cuidadores de 110 pacientes elegíveis consecutivos foram recrutados em um período de 5 anos. Eles forneceram dados de 52 semanas, ou até a descontinuação da medicação, sobre adesão, sialorréia, efeitos adversos, e razões para interrupção. Avaliamos e comparamos a melhor resposta para salivação, efeitos colaterais e interrupção da medicação usando análise de sobrevivência, e o efeito das variáveis na linha de base na taxa de descontinuação usando regressão de riscos proporcionais. RESULTADOS: Entre 110 participantes (71 do sexo masculino, 39 do sexo feminino; média de idade 8a 5m [DP 4a 3m], variação 1a 11m-18a 11m), benzexol, glicopirrolato, e escopolamina foram prescritos 81, 62, e 17 vezes respectivamente, com as respectivas taxas de resposta de 85%, 75%, and 65%. Pouco controle de cabeça e função oromotora foram preditivos de pior resposta. Efeitos colaterais mais frequentemente causaram interrupção da medicação em meninos do que em meninas (taxa de risco 1,8 [intervalo de confiança a 95% 1,0-3,2], p=0,048). Glicopirrolato teve menos efeitos colaterais. INTERPRETAÇÃO: Benzexol, glicopirrolato, ou escopolamina reduzem a sialorréia, mas as melhoras são atenuadas pelos efeitos colaterais. Em geral, glicopirrolato teve o melhor desempenho.
Subject(s)
Cholinergic Antagonists/therapeutic use , Developmental Disabilities/complications , Sialorrhea/drug therapy , Adolescent , Child , Child, Preschool , Female , Glycopyrrolate/therapeutic use , Humans , Infant , Male , Scopolamine/therapeutic use , Sialorrhea/etiology , Treatment Outcome , Trihexyphenidyl/therapeutic useABSTRACT
Importance: Selective serotonin receptor inhibitors are prescribed to reduce the severity of core behaviors of autism spectrum disorders, but their efficacy remains uncertain. Objective: To determine the efficacy of fluoxetine for reducing the frequency and severity of obsessive-compulsive behaviors in autism spectrum disorders. Design, Setting, and Participants: Multicenter, randomized, placebo-controlled clinical trial. Participants aged 7.5-18 years with autism spectrum disorders and a total score of 6 or higher on the Children's Yale-Brown Obsessive Compulsive Scale, modified for pervasive developmental disorder (CYBOCS-PDD) were recruited from 3 tertiary health centers across Australia. Enrollment began November 2010 and ended April 2017. Follow-up ended August 2017. Interventions: Participants were randomized to receive fluoxetine (n = 75) or placebo (n = 71). Study medication was commenced at 4 or 8 mg/d for the first week, depending on weight, and then titrated to a maximum dose of 20 or 30 mg/d over 4 weeks. Treatment duration was 16 weeks. Main Outcomes and Measures: The primary outcome was the total score on the CYBOCS-PDD (scores range from 0-20; higher scores indicate higher levels of maladaptive behaviors; minimal clinically important difference, 2 points) at 16 weeks postrandomization, analyzed with a linear regression model adjusted for stratification factors (site, age at baseline, and intellectual disability), with an additional prespecified model that included additional adjustment for baseline score, sex, communication level, and imbalanced baseline and demographic variables. Results: Among the 146 participants who were randomized (85% males; mean age, 11.2 years), 109 completed the trial; 31 in the fluoxetine group and 21 in the placebo group dropped out or did not complete treatment. The mean CYBOCS-PDD score from baseline to 16 weeks decreased in the fluoxetine group from 12.80 to 9.02 points (3.72-point decrease; 95% CI, -4.85 to -2.60) and in the placebo group from 13.13 to 10.89 points (2.53-point decrease; 95% CI, -3.86 to -1.19). The between-group mean difference at 16 weeks was -2.01 (95% CI, -3.77 to -0.25; P = .03) (adjusted for stratification factors), and in the prespecified model with further adjustment, it was -1.17 (95% CI, -3.01 to 0.67; P = .21). Conclusions and Relevance: In this preliminary study of children and adolescents with autism spectrum disorders, treatment with fluoxetine compared with placebo resulted in significantly lower scores for obsessive-compulsive behaviors at 16 weeks. Interpretation is limited by the high dropout rate, null findings of prespecified analyses that accounted for potentially confounding factors and baseline imbalances, and CIs for the treatment effect that included the minimal clinically important difference. Trial Registration: anzctr.org.au Identifier: ACTRN12608000173392.
Subject(s)
Autism Spectrum Disorder/drug therapy , Fluoxetine/therapeutic use , Obsessive-Compulsive Disorder/drug therapy , Selective Serotonin Reuptake Inhibitors/therapeutic use , Adolescent , Anxiety/diagnosis , Autism Spectrum Disorder/psychology , Child , Confounding Factors, Epidemiologic , Female , Fluoxetine/adverse effects , Humans , Male , Obsessive-Compulsive Disorder/classification , Patient Acuity , Selective Serotonin Reuptake Inhibitors/adverse effects , Stereotypic Movement Disorder/drug therapy , Treatment OutcomeABSTRACT
Sialorrhea is a common problem in children with disability, often negatively affecting socialization, self-esteem, and burden of care. Saliva control surgery is an available option to manage this problem, particularly when other conservative methods have failed. As little is known about the long-term impact of surgery, we followed up 62 patients who had combined bilateral submandibular duct translocation and bilateral sublingual gland excision at our pediatric hospital between 1994 and 2014. Eligible individuals were identified through a search of ICD procedure codes. When families of patients were contacted successfully, they were invited to complete a 14-item questionnaire designed specifically for this study. The results indicated that long-term outcomes of surgery were very good; 13/62 (21%) individuals no longer had a drooling problem and another 30 (48%) experienced only mild to moderate drooling. Although 84% families reported some or major improvement in drooling, 9 families reported that they would not go through the experience again because of a difficult recovery period, lack of effectiveness of the intervention, changes in saliva consistency that caused coughing and gagging, and dental decay. None of the collected variables were predictive of good or poor outcome. The study indicated that surgical intervention is effective in the long term in the majority of cases and can be recommended to other families who attend our saliva control clinic.
Subject(s)
Developmental Disabilities/complications , Sialorrhea/surgery , Sublingual Gland/surgery , Submandibular Gland/surgery , Adolescent , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Male , Patient Satisfaction/statistics & numerical data , Sialorrhea/diagnosis , Sialorrhea/etiology , Sialorrhea/psychology , Treatment Outcome , Young AdultABSTRACT
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.
Subject(s)
Cerebral Palsy , Emergency Service, Hospital , Enteral Nutrition/adverse effects , Intubation, Gastrointestinal/adverse effects , Adolescent , Child , Child, Preschool , Female , Hospitals, Pediatric , Humans , Infant , Male , Medical Audit , Retrospective Studies , Victoria , Young AdultABSTRACT
AIM: This study aimed to explore health professionals' experiences of implementing hip surveillance for young people with cerebral palsy (CP) and to identify any barriers they encounter. METHODS: A cross-sectional web-based survey of health professionals supporting children with CP was conducted. Responses were analysed through mixed methods. Responses to items presented as ordinal scales were analysed using descriptive statistics, and open-ended responses through a qualitative approach to identify themes. RESULTS: A total of 32 paediatricians, 2 rehabilitation specialists and 50 physiotherapists completed the survey, with respondents working within both hospital- and community-based settings. Barriers most frequently reported were inconsistency in radiology practice and reporting (35%), parent engagement (32%), limited communication between clinicians (31%), lack of clarity in lines of responsibility (27%) and forgetting to undertake surveillance (26%). Four major themes were identified through qualitative analysis: (i) recognition of the importance of clinical guidelines to hip surveillance; (ii) the value of each role in the team around a child; (iii) the challenge of sharing responsibility; and (iv) the importance of communication in facilitating collaboration. CONCLUSIONS: Barriers can be encountered at each phase of the hip surveillance process, but there are also factors that act as facilitators. Locally, the results will inform the development of an enhanced state-wide approach to hip surveillance for all children with CP. The identified barriers do not appear unique to the local context, and the findings may be transferable to other settings. Awareness of the potential barriers and facilitators would be valuable to those implementing hip surveillance in other areas.