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1.
Disabil Rehabil ; : 1-15, 2024 Jun 10.
Artigo em Inglês | MEDLINE | ID: mdl-38856092

RESUMO

PURPOSE: Chronic pain assessment tools exist for children, but may not be valid, reliable, and feasible for populations with functional, cognitive or communication limitations, for example, cerebral palsy (CP). This study aimed to (i) identify chronic pain assessment tools used with children and young people and rate their measurement properties; (ii) develop a CP specific feasibility rating tool to assess the feasibility of tools in CP; and (iii) categorise tools according to reporting method. MATERIALS AND METHODS: Assessment tools were identified by literature review. Their measurement properties were rated using the COnsensus based standards for the Selection of health Measurement INstruments. The CP specific Feasibility Rating Tool was developed and used to rate the tools. RESULTS: Fifty-seven chronic pain assessment tools were identified. Six have content validity for CP, four of these use proxy-report. Forty-two tools were considered feasible for people with CP; 24 self report and 18 observational/proxy-report. Only the Paediatric Pain Profile has content validity and feasibility for people with CP unable to self-report. CONCLUSIONS: There are few valid, reliable and feasible tools to assess chronic pain in CP. Further research is required to modify tools to enable people with cognitive limitations and/or complex communication to self-report pain.


Few of the existing chronic pain assessment tools are feasible or valid to use with all young people with cerebral palsy (CP).Modifications to self-report tools are needed to improve access for young people who have cognitive impairment or use alternative and augmentative communication.The pain assessment tool with the strongest feasibility and measurement properties for young people who cannot self-report is the Paediatric Pain Profile.Clinicians will need to consider a range of chronic pain assessment tools to assess the biopsychosocial domains important to young people with cerebral palsy.

2.
Brain Inj ; 38(10): 751-763, 2024 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-38796860

RESUMO

AIM: To systematically review the prevalence, risk factors and timing of onset of hip displacement in children with a post-neonatal (PNN) brain injury with regards to hip surveillance recommendations. METHOD: A search of PubMed, MEDLINE, Embase, CINAHL and Web of Science was conducted on 22nd February 2022. Studies were included if they reported presence of, and risk factors for, hip displacement in children with PNN brain injury. Data was extracted on patient characteristics, and analyzed in terms of risk factors of interest and timing of development of hip displacement. RESULTS: Six studies met the inclusion criteria (n = 408 participants). All were cohort studies: five retrospective and one prospective. Rates of hip displacement ranged from 1% to 100%, and were higher in children with diffuse brain injury at an early age, who were non-ambulant and had spastic quadriplegia. Hip displacement and hip dislocation were first identified at one and three months respectively following PNN brain injury. INTERPRETATION: Evidence on hip displacement in children with PNN brain injury is sparse and low quality. Children who remain non-ambulant after diffuse PNN brain injury before five years of age appear most at risk of developing progressive hip displacement and earlier hip surveillance is recommended.


As for children with cerebral palsy (CP), children with a post-neonatal (PNN) brain injury who are non-ambulant are most at risk of progressive hip displacement.Children with a diffuse brain injury before five years of age appear to be at greater risk.Hip displacement can occur very early and progress rapidly following PNN brain injury.


Assuntos
Lesões Encefálicas , Paralisia Cerebral , Luxação do Quadril , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Lesões Encefálicas/complicações , Luxação do Quadril/etiologia , Fatores de Risco
4.
Acta Paediatr ; 113(6): 1203-1208, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38591640

RESUMO

AIM: Determine the optimal antibiotic choice for lower respiratory tract infection (LRTI) in children with neurodisability. METHODS: Embase, Ovid Emcare and MEDLINE were searched for studies from inception to January 2023. All studies, except case reports, focusing on the antibiotic treatment of LRTI in children, with neurodisabilities were included. Outcomes included length of stay, intensive care admission and mortality. RESULTS: Nine studies met the inclusion criteria (5115 patients). All the studies were of low quality. The shortest length of stay was with anaerobic and gram-positive cover. Five studies used anaerobic, gram-positive and gram-negative cover (e.g., amoxicillin-clavulanic acid), which was frequently adequate. In one large study, it was better than gram-positive and gram-negative cover alone (e.g. ceftriaxone). Those unresponsive or more unwell at presentation improved faster on Pseudomonas aeruginosa cover (e.g., piperacillin-tazobactam). CONCLUSION: In this context, anaerobic, gram-positive and gram-negative cover is just as effective as P. aeruginosa cover, supporting empiric treatment with amoxicillin-clavulanic acid. If there is a failure to improve, broadening to include P. aeruginosa could be considered. This is consistent with a consensus statement on the treatment of LRTI in children with neurodisability. An accepted definition for what constitutes LRTI in this cohort is required before designing prospective randomised trials.


Assuntos
Antibacterianos , Infecções Respiratórias , Humanos , Antibacterianos/uso terapêutico , Criança , Infecções Respiratórias/tratamento farmacológico , Doenças do Sistema Nervoso/tratamento farmacológico
5.
BMJ Open ; 14(2): e076730, 2024 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-38365293

RESUMO

INTRODUCTION: The most common cause of morbidity and mortality in children with severe cerebral palsy (CP) is respiratory disease. BREATHE-CP (Better REspiratory and Airway Treatment and HEalth in Cerebral Palsy) is a multidisciplinary research team who have conducted research on the risk factors associated with CP respiratory disease, a systematic review on management and a Delphi study on the development of a consensus for the prevention and management of respiratory disease in CP. These strategies have not been investigated; therefore, it is not known if implementation is feasible, if they improve patient outcomes or if they are acceptable for families. METHODS AND ANALYSIS: Mixed-method feasibility pilot randomised controlled trial with economic analysis. Twenty children with CP aged 0-12 years who are at risk of respiratory disease will be followed up for 1 year. All children will receive baseline assessments for comparison. The control group will receive usual care from their treating teams. The intervention group will receive comprehensive assessments from physiotherapy, speech pathology and respiratory medicine. An individualised investigation and treatment plan will then be made. Participants in both groups will complete fortnightly patient-reported outcome surveys to assess symptoms and health service use. Analysis will include assessments of acceptability through qualitative interviews, implementation by ability to recruit, randomise and retain, practicality including costs of intervention and hospitalisation, and explore efficacy through quality-of-life surveys and decreased health service use for respiratory-related symptoms. ETHICS AND DISSEMINATION: Ethics and governance approvals have been obtained through Child and Adolescent Health Service Human Research Ethics Committee. At completion, this study will lead to the design of the definitive protocol to test intervention efficacy that maximises recruitment, retention and adherence to interventions. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12620000114943).

6.
Phys Occup Ther Pediatr ; : 1-18, 2023 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-37814984

RESUMO

AIM: Determine the feasibility of a gamified therapy (occupational therapy, physiotherapy, speech pathology) prescription app developed for children with neurodisability for delivering school and home therapy programs (the Zingo app). METHOD: A mixed-methods feasibility study was conducted with children (and their parents, therapists, and teachers) with neurodisability (n = 8, female= 5) who were prescribed a 4-week individualized therapy program by their usual treating therapist using Zingo. Primary outcome measures were program adherence, engagement, app quality, and user experience, collected with quantitative and qualitative methods. RESULTS: Mean adherence to the program was 58.0% (SD 27.2). Our combined Engagement Index (EI) score was 74.4% (SD 11.7). App quality measured using Mobile Application Rating Scale- User version was 4.6/5 (SD 0.7, n = 6) for parents, 4.6/5 (SD 0.5, n = 5) for teachers, and 4.4/5 (SD 0.6, n = 6) for therapists. Thematic analysis of semi-structured interviews yielded a primary theme of "app as motivator" for therapy. CONCLUSIONS: Adherence findings were affected by COVID-19 outbreak however remain comparable with other studies in this cohort. EI findings compared favorably with other studies. The findings are supportive of the feasibility of Zingo for delivering home and school therapy programs for children with neurodisability and was found to motivate therapy program completion.

7.
Dev Med Child Neurol ; 65(12): 1573-1586, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37147852

RESUMO

AIM: To identify the most frequently reported non-instrumented measures of gait, activity, and participation in children with cerebral palsy (CP) after undergoing gait corrective orthopaedic surgery. METHOD: Four databases were searched from database inception to the 9th December 2021 for studies that evaluated functional outcomes for children with CP under 18 years undergoing gait corrective orthopaedic surgery. RESULTS: Of 547 citations, 44 publications (n = 3535 participants, n = 1789 males, mean age 10 years 5 months [SD = 3 years 3 months], Gross Motor Function Classification System levels I-III at the time of surgery) were eligible for inclusion. Fourteen different outcome measures were used: one measure of gait, 10 measures of activity, and three measures of participation. Gait was measured with the Edinburgh Visual Gait Scale (EVGS; 4 out of 44). The most common activity and participation measures were the Functional Mobility Scale (FMS; 15 out of 44) and Pediatric Outcomes Data Collection Instrument (11 out of 44) respectively. No studies reported a combination of gait, activity, and participation measures. INTERPRETATION: The EVGS and FMS should be considered as core outcome measures in gait corrective orthopaedic surgery, while a measure of participation is unclear. Additional considerations for developing a comprehensive suite of outcomes include identifying a combination of clinical measures and performance-reflective questionnaires that are standardized for children with CP undergoing surgery and meaningful to clinicians and families.


Assuntos
Paralisia Cerebral , Procedimentos Ortopédicos , Masculino , Criança , Humanos , Adolescente , Paralisia Cerebral/complicações , Paralisia Cerebral/cirurgia , Marcha , Avaliação de Resultados em Cuidados de Saúde
8.
Disabil Rehabil ; 45(10): 1646-1654, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-35544592

RESUMO

PURPOSE: To determine the feasibility of using parent-reported outcome measures of the Paediatric Pain Profile (PPP), Sleep Disturbance Scale for Children (SDSC) and Care and Comfort Hypertonicity Questionnaire (CCHQ) as repeated outcome measures of change at weekly intervals for children with dyskinetic cerebral palsy (CP). The secondary aim was to explore the efficacy of individualised movement intervention. MATERIAL AND METHODS: In this pilot feasibility study a single subject research design was utilised. Three children with dyskinetic CP, completed 5 weeks of parent-reported baseline assessments, 8 weekly sessions of intervention and 5 weeks of follow up. RESULTS: All children completed 18 weeks of the study, with no missing data. There was evidence of parent-reported improvements in their child's pain and care and comfort between the baseline and intervention phases. CONCLUSIONS: The PPP, SDSC and CCHQ were feasible to assess pain, sleep and comfort before and after an intervention in children with dyskinetic CP. There is preliminary evidence that individualised movement intervention as little as once a week may help improve pain, sleep and improve ease of care and comfort. IMPLICATIONS FOR REHABILITATIONThe Paediatric Pain Profile is feasible to identify and monitor pain, as frequently as weekly, in children with dyskinetic cerebral palsy (CP).There is preliminary evidence that movement can decrease pain in children with dyskinetic CP.Assessments and treatment in this group may be interrupted due to their complex health issues which may be a limitation when collecting repeated measures.


Assuntos
Paralisia Cerebral , Criança , Humanos , Paralisia Cerebral/complicações , Qualidade de Vida , Projetos de Pesquisa , Estudos de Viabilidade , Dor/complicações
9.
Dev Med Child Neurol ; 65(3): 318-328, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36111806

RESUMO

AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.


Assuntos
Paralisia Cerebral , Qualidade de Vida , Criança , Humanos , Adulto Jovem , Autorrelato , Dor/diagnóstico , Adaptação Psicológica , Medidas de Resultados Relatados pelo Paciente , Psicometria , Reprodutibilidade dos Testes
10.
JMIR Pediatr Parent ; 5(3): e34588, 2022 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-35943782

RESUMO

BACKGROUND: Mobile health (mHealth) apps for children are increasing in availability and scope. Therapy (physiotherapy, speech pathology, and occupational therapy) prescription apps to improve home or school program adherence work best when developed to be highly engaging for children and when they incorporate behavior change techniques (BCTs) within their design. OBJECTIVE: The aim of this study was to describe the development of a user-centered therapy prescription app for children (aged 6-12 years) with neurodevelopmental disabilities (eg, cerebral palsy, autism spectrum disorder, and intellectual disability) incorporating intervention mapping (IM) and gamified design. METHODS: We used an iterative, user-centered app development model incorporating the first 3 steps of IM. We conducted a needs analysis with user feedback from our previous mHealth app study, a literature review, and a market audit. Change objectives were then specified in alignment with the psychological needs of autonomy, competence, and relatedness identified in self-determination theory. From these objectives, we then selected BCTs, stipulating parameters for effectiveness and how each BCT would be operationalized. A gamification design was planned and implemented focusing on maximizing engagement in children. In total, 2 rounds of consultations with parents, teachers, and therapists and 1 round of prototype app testing with children were conducted to inform app development, with a final iteration developed for further testing. RESULTS: The IM process resulted in the specification of app elements, self-determination theory-informed BCTs, that were embedded into the app design. The gamification design yielded the selection of a digital pet avatar with a fantasy anime visual theme and multiple layers of incentives earned by completing prescribed therapy activities. Consultation groups with professionals working with children with disabilities (4 therapists and 3 teachers) and parents of children with disabilities (n=3) provided insights into the motivation of children and the pragmatics of implementing app-delivered therapy programs that informed the app development. User testing with children with disabilities (n=4) highlighted their enthusiasm for the app and the need for support in the initial phase of learning the app. App quality testing (Mobile Application Rating Scale-user version) with the children yielded means (out of 5) of 4.5 (SD 0.8) for engagement, 3.3 (SD 1.6) for function, 3.3 (SD 1.7) for aesthetics, and 4.3 (SD 1.1) for subjective quality. CONCLUSIONS: mHealth apps designed for children can be greatly enhanced with a systematic yet flexible development process considering the specific contextual needs of the children with user-centered design, addressing the need for behavior change using the IM process, and maximizing engagement with gamification and strong visual design.

11.
J Pediatr Rehabil Med ; 15(1): 31-37, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35311729

RESUMO

Optimum management of hip displacement in children with cerebral palsy (CP) is facilitated by an approach that focuses on anticipatory and preventive measures. Hip surveillance programs for children with CP were developed at the beginning of the new millennium, with the purpose of identifying hip displacement sufficiently early to permit a choice of effective management options. In the early years, hip surveillance was guided by epidemiological analysis of population-based studies of prevalence. In Australia, a National Hip Surveillance in CP Working Group was first convened in 2005. This resulted in a 2008 Consensus Statement of recommendations published and endorsed by Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM). The group undertook that the recommendations should be reviewed every 5 years to ensure currency and congruency with the emerging evidence base. As new evidence became available, hip surveillance guidelines developed, with the most recent 2020 Australian Hip Surveillance Guidelines endorsed by the AusACPDM. Implementing comprehensive hip surveillance programs has now been shown to improve the natural history of hip dislocations and improve quality of life. Standardised hip surveillance programs can also facilitate planning for multicentre research through harmonisation of data collection. This, in turn, can help with the identification of robust new evidence that is based on large cohort or population studies. Here a review of evidence informing the updated 2020 Hip Surveillance Guidelines is presented.


Assuntos
Paralisia Cerebral , Luxação do Quadril , Austrália , Paralisia Cerebral/epidemiologia , Criança , Conferências de Consenso como Assunto , Luxação do Quadril/diagnóstico , Luxação do Quadril/etiologia , Luxação do Quadril/prevenção & controle , Humanos , Vigilância da População/métodos , Qualidade de Vida
12.
Clin Rehabil ; 35(2): 222-231, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32907375

RESUMO

OBJECTIVE: To investigate feasibility of aquatic high intensity interval training for adolescents with cerebral palsy, who can ambulate independently but may choose a mobility aid in some circumstances. DESIGN: Pilot randomised controlled trial. METHOD: Following baseline assessments, participants were randomised to usual care or ten weeks of twice weekly aquatic high intensity interval training. Each class comprised 10 one-minute exercise intervals separated by one-minute rest. High intensity exercise was defined as the attainment of ⩾80% of peak heart rate measured by telemetry. SETTING: Tertiary paediatric hospital. MAIN MEASURES: Primary outcomes related to the feasibility of the protocol to progress to a definitive trial. Consumer feedback was obtained. RESULTS: Of 119 potential participants, 46 appeared eligible and 17 consented, resulting in a recruitment fraction of 37% (95% CI 23-52). Twelve completed baseline assessments and were randomised (5 males; 14 years 7 months SD 2 years 0 months). In the intervention group, of the 1190 exercise stations (across all participants and sessions), heart rate data were available for 1180 stations and high intensity exercise was achieved during 1111 stations (93%, 95% CI 92-95). All randomised participants completed the study and reported that the intervention was fun and provided friendship opportunities. There were no major adverse events or exacerbation of pain. CONCLUSIONS: Aquatic high intensity interval training in ambulant adolescents with cerebral palsy is feasible, while maintaining adherence and fidelity. Uncertainty remains on the efficacy of the intervention, highlighting the need for a large definitive trial.


Assuntos
Paralisia Cerebral/terapia , Treinamento Intervalado de Alta Intensidade/métodos , Adolescente , Paralisia Cerebral/fisiopatologia , Criança , Terapia por Exercício/métodos , Tolerância ao Exercício , Feminino , Frequência Cardíaca/fisiologia , Humanos , Masculino , Projetos Piloto
14.
J Hand Ther ; 34(3): 423-432.e7, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32571602

RESUMO

STUDY DESIGN: This is a noninferior, single-blind, randomized controlled trial. INTRODUCTION: Joint stiffness is common after plaster cast immobilization for simple phalanx and metacarpal fractures in children. The limited literature suggests this joint stiffness in children resolves without one-on-one therapy; however, without robust studies confirming that there is no detrimental effect from withdrawing treatment, many children are still referred. PURPOSE OF THE STUDY: The purpose of this study was to determine if an educational handout for self-management of stiffness is noninferior to one-on-one hand therapy for achieving full range of motion (ROM). METHODS: Participants were randomly assigned to group one who received the handout or group two who received hand therapy in addition to the handout. The ROM was measured by composite flexion and total active motion (TAM). The noninferiority margin was 10% difference between the two groups in the proportion of participants who achieved full ROM at two weeks after cast removal. RESULTS: Sixty participants in each group completed the study. Group difference for composite flexion was 1.7% (95% CI: -3.9% to 7.2%), demonstrating noninferiority. Group difference for TAM was inconclusive at 8.3% (95% CI: -2.1% to 18.7%). Sensitivity analysis adjusting for participants with full composite flexion at the baseline resulted in the group difference for composite flexion of 3.1% (95% CI: -3.6% to 9.8%), maintaining noninferiority, but group difference for TAM at 10.4% (95% CI: 0.0% to 20.9%), was inconclusive with the handout group significantly worse. CONCLUSION: An educational handout is noninferior to hand therapy for achieving full ROM in composite flexion but not TAM. This needs to be taken into consideration for changing clinical practise.


Assuntos
Falanges dos Dedos da Mão , Fraturas Ósseas , Ossos Metacarpais , Moldes Cirúrgicos , Criança , Humanos , Imobilização , Amplitude de Movimento Articular , Método Simples-Cego
15.
Dev Med Child Neurol ; 63(2): 172-182, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32803795

RESUMO

Respiratory illness is the leading cause of mortality in children with cerebral palsy (CP). Although risk factors for developing chronic respiratory illness have been identified, comprehensive clinical care recommendations for the prevention and management of respiratory illness do not currently exist. We invited over 200 clinicians and researchers from multiple disciplines with expertise in the management of respiratory illness in children with CP to develop care recommendations using a modified Delphi method on the basis of the RAND Corporation-University of California Los Angeles Appropriateness Method. These recommendations are intended for use by the wide range of practitioners who care for individuals living with CP. They provide a framework for recognizing multifactorial primary and secondary potentially modifiable risk factors and for providing coordinated multidisciplinary care. We describe the methods used to generate the consensus recommendations, and the overall perspective on assessment, prevention, and treatment of respiratory illness in children with CP. WHAT THIS PAPER ADDS: The first consensus statement for preventing and managing respiratory disease in cerebral palsy (CP). Risk factors for respiratory disease in CP should be identified early. Individuals with CP at risk of respiratory disease require regular assessment of risk factors. Effective partnerships between multidisciplinary teams, individuals with CP, and families are essential. Treatment of respiratory disease in individuals with CP must be proactive.


La enfermedad respiratoria es la principal causa de mortalidad en niños con parálisis cerebral (PC). Aunque se han identificado los factores de riesgo para desarrollar enfermedades respiratorias crónicas, actualmente no existen recomendaciones completas de atención clínica para la prevención y el tratamiento de las enfermedades respiratorias. Invitamos a más de 200 médicos e investigadores de múltiples disciplinas con experiencia en el manejo de enfermedades respiratorias en niños con PC para desarrollar recomendaciones de atención utilizando un método Delphi modificado sobre la base del Método de adecuación RAND Corporation - Universidad de California en Los Ángeles. Estas recomendaciones están destinadas a ser utilizadas por la amplia gama de profesionales que atienden a personas que viven con PC. Proporcionan un marco para reconocer factores de riesgo multifactoriales primarios y secundarios potencialmente modificables y para proporcionar atención coordinada multidisciplinaria. Describimos los métodos utilizados para generar las recomendaciones de consenso, y la perspectiva general sobre la evaluación, prevención y tratamiento de enfermedades respiratorias de niños con PC.


Doença respiratória é a principal causa de mortalidade em crianças com paralisia cerebral (PC). Embora fatores de risco para desenvolver doença respiratória crônica tenham sido identificados, recomendações abrangentes de cuidado clínico e gerenciamento de doença respiratória não existem atualmente. Convidamos cerca de 200 clínicos e pesquisadores de múltiplas disciplinas com experiência no manejo de doença respiratória em crianças com PC para desenvolver recomendações de cuidado usando um método Delphi com base no método de Apropriação da Corporação RAND - Universidade da Califórnia. Estas recomendações são para uso de profissionais que atendem indivíduos com PC. Elas oferecem uma estrutura para reconhecer fatores de risco multifatoriais potencialmente modificáveis e prover cuidado multidisciplinar. Descrevemos métodos usados para gerar as recomendações do consenso, e a perspectiva geral de avaliação, prevenção e tratamento de doença respiratória em crianças com PC.


Assuntos
Paralisia Cerebral/complicações , Paralisia Cerebral/terapia , Consenso , Guias de Prática Clínica como Assunto/normas , Transtornos Respiratórios/etiologia , Transtornos Respiratórios/terapia , Adolescente , Adulto , Paralisia Cerebral/diagnóstico , Técnica Delphi , Humanos , Transtornos Respiratórios/diagnóstico , Transtornos Respiratórios/prevenção & controle , Adulto Jovem
16.
BMJ Open ; 10(12): e040108, 2020 12 22.
Artigo em Inglês | MEDLINE | ID: mdl-33371023

RESUMO

OBJECTIVE: Determine the adherence to and effectiveness of an 8-week home exercise programme for children with disabilities delivered using Physitrack, an online exercise prescription tool, compared with traditional paper-based methods. DESIGN: Single-blinded, parallel-groups, randomised controlled trial (RCT). SETTING: Intervention took place in participants' homes in Western Australia. PARTICIPANTS: Children aged 6 to 17 years, with neurodevelopmental disabilities including cerebral palsy (CP), receiving community therapy services. INTERVENTION: All participants completed an individualised home exercise programme, which was delivered to the intervention group using Physitrack and conventional paper-based methods for the control group. PRIMARY OUTCOME MEASURES: Adherence to exercise programme, goal achievement and exercise performance. SECONDARY OUTCOME MEASURES: Enjoyment, confidence and usability of Physitrack. RESULTS: Fifty-four participants with CP (n=37) or other neurodevelopmental disabilities (n=17) were recruited. Fifty-three were randomised after one early withdrawal. Forty-six completed the 8-week programme, with 24 in the intervention group and 22 in the control group. There was no difference between the two groups for percentage of exercises completed (intervention (n=22): 62.8% (SD 27.7), control (n=22): 55.8% (SD 19.4), between group mean difference -7.0% (95% CI: -21.6 to 7.5, p=0.34)). Both groups showed significant improvement in their self-rated performance of individualised goal activities, however there was no statistically significant difference between groups for goal achievement, quality of exercise performance, enjoyment, confidence or preferred method of delivery. There were no adverse events. CONCLUSION: Physitrack provides a therapist with a new means of providing an exercise programme with online tools such as exercise videos, but our preliminary findings indicate that it may be no better than a traditional paper-based method for improving exercise adherence or the other outcomes measured. Exercise programmes remain an intervention supported by evidence, but a larger RCT is required to fully evaluate online delivery methods. TRIAL REGISTRATION DETAILS: Australian New Zealand Clinical Trials Registry; ACTRN12616000743460.


Assuntos
Paralisia Cerebral , Adolescente , Austrália , Transtorno do Espectro Autista , Criança , Terapia por Exercício , Feminino , Humanos , Masculino , Prescrições , Qualidade de Vida , Austrália Ocidental
17.
Front Pediatr ; 8: 333, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32671000

RESUMO

Cerebral palsy (CP) is the most common cause of disability in childhood. Respiratory illness is the most common cause of mortality, morbidity, and poor quality of life in the most severely affected children. Respiratory illness is caused by multiple and combined factors. This review describes these factors and discusses assessments and treatments. Oropharyngeal dysphagia causes pulmonary aspiration of food, drink, and saliva. Speech pathology assessments evaluate safety and adequacy of nutritional intake. Management is holistic and may include dental care, and interventions to improve nutritional intake, and ease, and efficiency of feeding. Behavioral, medical, and surgical approaches to drooling aim to reduce salivary aspiration. Gastrointestinal dysfunction, leading to aspiration from reflux, should be assessed objectively, and may be managed by lifestyle changes, medications, or surgical interventions. The motor disorder that defines cerebral palsy may impair fitness, breathing mechanics, effective coughing, and cause scoliosis in individuals with severe impairments; therefore, interventions should maximize physical, musculoskeletal functions. Airway clearance techniques help to clear secretions. Upper airway obstruction may be treated with medications and/or surgery. Malnutrition leads to poor general health and susceptibility to infection, and improved nutritional intake may improve not only respiratory health but also constipation, gastroesophageal reflux, and participation in activities. There is some evidence that children with CP carry pathogenic bacteria. Prophylactic antibiotics may be considered for children with recurrent exacerbations. Uncontrolled seizures place children with CP at risk of respiratory illness by increasing their risk of salivary aspiration; therefore optimal control of epilepsy may reduce respiratory illness. Respiratory illnesses in children with CP are sometimes diagnosed as asthma; a short trial of asthma medications may be considered, but should be discontinued if ineffective. Overall, management of respiratory illness in children with CP is complex and needs well-coordinated multidisciplinary teams who communicate clearly with families. Regular immunizations, including annual influenza vaccination, should be encouraged, as well as good oral hygiene. Treatments should aim to improve quality of life for children and families and reduce burden of care for carers.

18.
J Pain Res ; 13: 897-908, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32431538

RESUMO

PURPOSE: Chronic pain is common in adolescents. Evidence-based guidelines recommend interdisciplinary treatment, but access is limited by geography. The development of hybrid programs utilizing both face-to-face and videoconference treatment may help overcome this. We developed a 7-week hybrid pediatric interdisciplinary pain program (Hybrid-PIPP) and wished to compare it to individual face-to-face sessions (Standard Care). Our objective was to test the feasibility of a protocol that used a matched pair un-blinded randomized controlled design to investigate the efficacy and cost-effectiveness of the Hybrid-PIPP compared to Standard Care. PATIENTS AND METHODS: Parent-adolescent dyads were recruited from tertiary pediatric clinics and matched by disability before randomization to minimize allocation bias. The adolescents (aged 11-17) had experienced primary pain for >3 months. Hybrid-PIPP involved 11 hrs of group therapy and 4 individual videoconference sessions. Standard care was provided by the same clinical team, using the same treatment model and similar intensity as the Hybrid-PIPP. The intention was to recruit participants for 3 Hybrid-PIPP groups with a comparison stream. Recruitment was ceased after 2 groups due to the high participant disability requiring more intensive intervention. RESULTS: Eighteen dyads were screened and 13 randomized (7 Hybrid-PIPP, 6 Standard Care, 2 unsuitable, 3 unallocated when the study was stopped). The study met a priori feasibility criteria for staff availability; recruitment rate; treatment completion; and data collection. Global satisfaction ratings were similar in both streams (SC median 7, range 5-9 and Hybrid-PIPP median 8.5, range 5-10). Challenges were identified in both streams. A future modified Hybrid-PIPP was considered acceptable if the intensity is increased to manage the high level of disability. Standard care was considered inefficient. No adverse events were reported. CONCLUSION: The study determined that the protocol met a priori feasibility criteria, but to be practicable in a real world, health environment requires significant modifications. REGISTRATION: ANZTR(ACTRN2614000489695).

20.
Disabil Rehabil ; 42(9): 1227-1232, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-30686039

RESUMO

Purpose: Describe physical activity energy expenditure, body composition, and nutritional intake in adolescents with cerebral palsy (CP) in the context of health recommendations.Materials and methods: A cross-sectional study of 12 adolescents, aged 12-19 years, with CP, classified as Gross Motor Function Classification System levels II-V. Actiheart® accelerometry assessed daily physical activity energy expenditure; Dual Energy X-ray Absorptiometry (DXA) and skinfold assessment measured percentage body fat; the Modified Nutrition Questionnaire for children aged 12-18 years assessed nutritional intake.Results: These adolescents spent per day a median of 413.3 min in sedentary (range: 90.0-621.9), 206.2 min in light activity (range: 48.4-509.5), and 65.5 min in moderate-vigorous physical activity (MVPA) (range: 9.4-363.9). Sixty-four percent of the participants met guidelines for time spent in MVPA, only one participant (9%) met the target for sedentary behaviour, and one (9%) participant reached all of the nutritional targets. Participants had a median percentage body fat of 43% by DXA and 40.3% by skinfold assessment. Seventy-three percent of the participants were classed as having a potentially unhealthy body composition according to percentage body fat.Conclusions: Adolescents with CP may have a high percentage body fat, and high levels of both sedentary activity and moderate-vigorous physical activity.Implications for rehabilitationCerebral palsy specific strategies to decrease time in sedentary activity need to be determined as adolescents were not meeting national guidelines, however, most did meet guidelines for time spent in moderate to vigorous physical activity.Percentage body fat should be monitored in adolescents with cerebral palsy, as adolescents with cerebral palsy tend to have a high body fat ratio, despite some recording Body Mass Index within a healthy range.Triceps and subscapular skinfold assessment accurately assess percentage body fat in adolescents with cerebral palsy.


Assuntos
Peso Corporal , Paralisia Cerebral , Exercício Físico , Acelerometria , Adolescente , Composição Corporal , Índice de Massa Corporal , Criança , Estudos Transversais , Metabolismo Energético , Humanos , Adulto Jovem
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