A Scoping Review on Mobile Health Technology for Assessment and Intervention of Upper Limb Motor Function in Children with Motor Impairments.

Upper limb (UL) motor dysfunctions impact residual movement in hands/shoulders and limit participation in play, sports, and leisure activities. Clinical and laboratory assessments of UL movement can be time-intensive, subjective, and/or require specialized equipment and may not optimally capture a child's motor abilities. The restrictions to in-person research experienced during the COVID-19 pandemic have inspired investigators to design inclusive at-home studies with child participants and their families. Relying on the ubiquity of mobile devices, mobile health (mHealth) applications offer solutions for various clinical and research problems. This scoping review article aimed to aggregate and synthesize existing research that used health technology and mHealth approaches to evaluate and assess the hand function and UL movement in children with UL motor impairment. A scoping review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) model was conducted in March 2023 yielding 25 articles (0.32% of 7891 studies). Assessment characteristics included game or task-based tests (13/25, 52%), primarily for neurological disorders (e.g., autism spectrum disorder [ASD], dystonia, dysgraphia) or children with cerebral palsy (CP). Although several mHealth studies were conducted in the clinical environment (10/25, 40%), studies conducted at home or in nonclinical settings (15/25, 60%) reported acceptable and highly satisfactory to the patients as minimizing the potential risks in participation. Moreover, the remaining barriers to clinical translation included object manipulation on a touch screen, offline data analysis, real-world usability, and age-appropriate application design for the wider population. However, the results emphasize the exploration of mHealth over traditional approaches, enabling user-centered study design, family-oriented methods, and large-scale sampling in future research.

General movement assessment efficacy for assessment of nervous system integrity in children after hypoxic-ischemic encephalopathy in middle income countries.

BACKGROUND: Many infants who survive hypoxic-ischemic encephalopathy (HIE) face long-term complications like epilepsy, cerebral palsy, and developmental delays. Detecting and forecasting developmental issues in high-risk infants is critical. AIM: This study aims to assess the effectiveness of standardized General Movements Assessment (GMA) and Hammersmith Infant Neurological Examinations (HINE) in identifying nervous system damage and predicting neurological outcomes in infants with HIE. DESIGN: Prospective. SUBJECTS AND MEASURES: We examined full-term newborns with perinatal asphyxia, classifying them as Grade 2 HIE according to Sarnat and Sarnat. The study included 31 infants, with 14 (45.2 %) receiving therapeutic hypothermia (Group 1) and 17 (54.8 %) not (Group 2). We evaluated general movements during writhing and fidgety phases and conducted neurological assessments using the HINE. RESULTS: All infants exhibited cramped-synchronized - like movements, leading to cerebral palsy (CP) diagnosis. Three children in Group 1 and four in Group 2 lacked fidgety movements. During active movements, HINE and GMA showed high sensitivity and specificity, reaching 96 % and 100 % for all children. The ROC curve's area under the curve (AUC) was 0.978. CONCLUSION: Our study affirms HINE and GMA as effective tools for predicting CP in HIE-affected children. GMA exhibits higher sensitivity and specificity during fidgety movements. However, study limitations include a small sample size and data from a single medical institution, necessitating further research.

Single-pulse transcranial magnetic stimulation for assessment of motor development in infants with early brain injury.

INTRODUCTION: Single-pulse transcranial magnetic stimulation (TMS) has many applications for pediatric clinical populations, including infants with perinatal brain injury. As a noninvasive neuromodulation tool, single-pulse TMS has been used safely in infants and children to assess corticospinal integrity and circuitry patterns. TMS may have important applications in early detection of atypical motor development or cerebral palsy. AREAS COVERED: The authors identified and summarized relevant studies incorporating TMS in infants, including findings related to corticospinal development and circuitry, motor cortex localization and mapping, and safety. This special report also describes methodologies and safety considerations related to TMS assessment in infants, and discusses potential applications related to diagnosis of cerebral palsy and early intervention. EXPERT OPINION: Single-pulse TMS has demonstrated safety and feasibility in infants with perinatal brain injury and may provide insight into neuromotor development and potential cerebral palsy diagnosis. Additional research in larger sample sizes will more fully evaluate the utility of TMS biomarkers in early diagnosis and intervention. Methodological challenges to performing TMS in infants and technical/equipment limitations require additional consideration and innovation toward clinical implementation. Future research may explore use of noninvasive neuromodulation techniques as an intervention in younger children with perinatal brain injury to improve motor outcomes.

Single pulse transcranial magnetic stimulation (TMS) is a safe and noninvasive way to study brain activity in infants and children who have experienced brain injuries around the time of birth. Infants who have had an early brain injury may develop cerebral palsy, a developmental disability that affects movement. TMS uses a device that gives single pulses of energy to activate specific areas of the brain. This can be used to study how the brain connects to the muscles in the body through paths or 'tracts.' TMS helps researchers understand the development of the tracts and the potential need for therapy. This article reviews research studies that used TMS in infants and explains how TMS can be used to assess brain development. It also reviews safety considerations and challenges related to using TMS in infants. TMS could be a valuable tool for early diagnosis of cerebral palsy and could also help guide treatments for infants with brain injuries. However, more research is needed, using larger groups of infants, to potentially expand the use of TMS in clinical practice. Future directions include developing infant-specific research tools and using noninvasive brain stimulation to improve recovery for infants with brain injuries.

The cost of respiratory hospitalizations in children with cerebral palsy.

AIM: To establish the burden of respiratory illness in cerebral palsy (CP) on the Western Australian health care system by quantifying the costs of respiratory hospitalizations in children with CP, compared with non-respiratory hospitalizations. METHOD: A 2-year (2014-2015) retrospective study using linked hospital data (excluding emergency department visits), in a population of children with CP in Western Australia aged 18 years and under (median age at hospitalization 7 years; interquartile range 5-12 years). RESULTS: In 671 individuals (57% male) there were 726 emergency hospitalizations, and 1631 elective hospitalizations. Although there were more elective hospitalizations, emergency hospitalizations were associated with longer stays in hospital, and more days in an intensive care unit, resulting in a higher total cost of emergency hospitalizations than elective hospitalizations (total costs: emergency AU$7 748 718 vs elective AU$6 738 187). 'Respiratory' was the leading cause of emergency hospitalizations, contributing to 36% of all emergency admission costs. For a group of high-cost inpatient users (top 5% of individuals with the highest total inpatient costs) the most common reason for hospitalization was 'respiratory'. Where non-respiratory admissions were complicated by an additional respiratory diagnosis, length of stay was greater. INTERPRETATION: Respiratory hospitalizations in CP are a significant driver of health care costs. In the paediatric group, they are a burden for a subgroup of children with CP. WHAT THIS PAPER ADDS: Respiratory illness is the most costly area for unplanned, emergency hospitalizations for children and young people with cerebral palsy. The top 5% of individuals with the highest total inpatient costs account for a disproportionate amount of health care costs.

Health care resource utilization and costs among patients with spasticity or cervical dystonia.

BACKGROUND: Spasticity and cervical dystonia (CD) are movement disorders with considerable direct and indirect health care cost implications. Although several studies have discussed their clinical impact, few have calculated the economic burden of these disorders. OBJECTIVE: To assess the all-cause health care resource utilization (HCRU) and costs in adults and children with spasticity or CD. METHODS: This retrospective, observational cohort-based study was conducted using administrative insurance claims from the IQVIA PharMetrics Plus database from October 1, 2015, to December 31, 2019. Patients were selected based on International Classification of Diseases, Tenth Revision, Clinical Modification diagnosis codes for first evidence of spasticity (associated with a spasticity etiology) or CD (index date) during the selection window, from April 1, 2016, through December 31, 2018. Cases were stratified into 3 mutually exclusive cohorts: adult patients with spasticity, pediatric patients with spasticity, and patients with CD; those with spasticity who had a history of stroke or cerebral palsy were also evaluated in subcohorts. Patients without evidence of spasticity or CD during the study period were identified as a matched comparator group and were randomly assigned an index date. Patients with spasticity were matched 1:1 to the comparator group based on age, sex, index year, and payer type using descriptive analyses. RESULTS: 215,739 adult patients with spasticity, 29,644 pediatric patients with spasticity, and 9,035 adult patients with CD were identified after matching. Adult patients with spasticity and CD had mean (SD) ages of 48.4 (15.6) years and 48.0 (13.1) years, respectively. Stroke was identified in 31.9% (n = 68,928) of adult patients with spasticity, and cerebral palsy was identified in 11.3% (n = 3,364) of pediatric patients with spasticity. Adult and pediatric patients with spasticity and patients with CD had significantly higher HCRU (including mean number of outpatient, emergency department, and inpatient visits and proportions of patients with prescription fills) and higher mean total health care costs per patient (adult patients with spasticity $29,912 vs $7,464; pediatric patients with spasticity $16,089 vs $2,963; and patients with CD $20,168 vs $7,141) than matched comparators (all P<0.0001). CONCLUSIONS: The management of patients with spasticity or CD results in considerably higher health care expenses. Within managed health care systems, more effective management of spasticity and CD in adult and pediatric patients represents a significant opportunity for cost savings.

The assessment and management of voiding dysfunction in adults living with cerebral palsy.

PURPOSE: Improvements in life expectancy have resulted in an increasing number of adults with cerebral palsy, of which over a third will have neurogenic lower urinary tract dysfunction (NLUTD). This review explores urinary dysfunction in adults with cerebral palsy. METHODS: Relevant literature on NLUTD in adults with cerebral palsy was identified using an unrestricted search of PubMed. RESULTS: Urinary incontinence is the most common complaint, often accompanied by frequency and urgency. Special consideration should be given to women and in those with worse motor or cognitive dysfunction as they have been shown to have more severe urologic symptoms. NLUTD can have significant morbidity and impact quality of life. Hospital admission, urinary tract infections, and hydronephrosis are common urologic complications, with poor urinary function associated with decreased quality of life (QOL). Neurogenic detrusor overactivity is the most common urodynamic abnormality, with elevated detrusor leak point pressure and reduced bladder capacity. Detrusor sphincter dyssynergy is present in some patients and maybe secondary to generalized spasticity or incomplete upper motor neuron injury. Elevated bladder capacity is also present in a portion of patients, and becomes particularly relevant in adults as a result of increased spasticity of the urinary sphincter. Conservative management like functional toileting strategies, medications, and incontinence aids are successful in most patients. Medical management with anticholinergics is well described, and frequently the only intervention required, particularly in children. Intermittent clean catheterization has mixed results with this population, as its efficacy is limited by pelvic spasticity and patient factors. Surgical intervention, while often successful, should be restricted to select patients, as it is associated with significant morbidity in this population. CONCLUSION: Management of NLUTD in adults with CP involves conservative management, medications, and in rare cases surgical intervention.

Family caregivers' experience of care with a child with cerebral palsy: the lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana.

INTRODUCTION: Caring for a child with cerebral palsy may be more emotionally and physically exhausting than caring for a typical growing child. The family caregivers' perspective of this phenomenon needs exploring to facilitate the development of services. Our study explored the challenges family caregivers face with children with cerebral palsy in a resource-limited context in northern Ghana. METHODS: We conducted a qualitative study underpinned by phenomenological principles where it is believed that the reality of a phenomenon is tied to caregivers' perspectives of their own experiences. In this study, we unearthed caregivers' experiences/challenges from their own perspectives. The method of data analysis used was to allow the issues to emerge from the data (inductive process) using the content analysis approach. We recruited 13 caregivers of children with cerebral palsy from the physiotherapy unit at Tamale Teaching Hospital, and conducted individual in-depth interviews supported by an open-ended topic guide. Interviews were audio recorded, transcribed, and translated and coded inductively before conducting a content analysis of the data when grouped into themes. RESULTS: We have identified barriers to managing a child with cerebral palsy, including sociocultural barriers (values, attitudes and belief systems within society), economic challenges and immediate physical care burdens. Specific barriers included discrimination and isolation, lack of family and societal support, with poor access to health information and formal education. Others were lack of information on the cause and course of cerebral palsy, caregivers' loss of jobs, increased healthcare expenditure and struggles in lifting and moving children, which resonate with evidence-based multidimensional model of caregiving process and caregiver burden. CONCLUSION: Caregivers have the arduous task of caring for a child with cerebral palsy. Social support interventions and policy initiatives that seek to ameliorate caregivers' finances and make formal education accessible to this marginalised child population may be beneficial in this context.

Eficacia y seguridad del sistema de rehabilitación intensiva dinámica con traje terapéutico en pacientes pediátricos con daño neurológico central / Efficacy and safety of the dynamic intensive rehabilitation system with a therapeutic suit in pediatric patients with central neurological damage

ANTECEDENTES: En el marco de la metodología ad hoc para evaluar solicitudes de tecnologías sanitarias. aprobada mediante Resoluc én del Instituto de Evaluación de Tecnologías en Salud e Investigación Nr 111-IETSI-ESSALUD-2021. se ha elaborado el presente dictamen. el cual expone la evaluación de la eficacia y seguridad del sistema de rehabilitación intensiva dinámica con traje terapéutico en pacientes pediátricos con daño neurológico central. De este moco. la Dra. Jeanette Borja Arroyo. especialista en medicina física y rehabilitación del Servicio de Rehabilitación Pediátrica del Hospital Nacional Edgardo Rebagliati Martins (HNERM). siguiendo la Directiva N° 001-IETSI-ESSALUD2018. envía al Instituto de Evaluación de Tecnologías en Salud e Investigación - IETSI la solicitud de inclusión del sistema de rehabilitación mediante protocolo Pediasuit en el petitorio de Dispositivos Médicos de EsSaiud. ASPECTOS GENERALES Las lesiones del sistema nervioso central causan una amplia gama de manifestaciones clínicas que varían de acuerdo con la ubicación y la gravedad del daño neuronal y del tejido conectivo circundante (Popovió & Sinkjr. 2013). Específicamente, la zona de la lesión focalizada en áreas motoras se relaciona con una interrupción del haz de axones dentro del sistema nervioso central o un nervio periférico que se manifiesta con la perdida de movilidad y sensibilidad de un grupo muscular (Popovió & Sinkjr, 2013). Uno de los desórdenes más comunes causado por una lesión en la corteza motora cerebral es la parálisis cerebral (PC). que se produce por la interacción de diversos factores o eventos que ocurren en el periodo prenatal, durante el parto, periodo posnatal o en los primeros años de vida, e impiden el desarrollo adecuado de la morfología cerebral. METODOLOGÍA: Se llevó a cabo una búsqueda bibliográfica amplia y exhaustiva con el objetivo de identificar la mejor evidencia disponible sobre la eficacia y seguridad del sistema de rehabilitación intensiva dinámica con traje terapéutico en pacientes pediátricos con daño neurológico central. La búsqueda bibliográfica se realizó en las bases de datos bibliográficas PubMed, The Cochrane Library. Web of Science y LILACS (Literatura Latinoamericana y del Caribe en Ciencias de la Salud) Asimismo, se realizó una búsqueda dentro de la información generada en las páginas web de grupos o instituciones que realizan revisiones sistemáticas (RS). evaluación de tecnologías sanitarias (ETS) y guías de práctica clínica (GPC), tales como el National Institute for Health and Care Excellence (NICE), la C,anadian Agency for Drugs and Technologies in Health (CADTH). el Scottish Medicines Consortium (SMC). la Haute Authorité de Santé (HAS). el Institute for Quality and Efficiency in HealthCare (IQWiG), el Institute for Clinical and Economic Review (ICER) yen la Base Regional de Informes de Evaluación de Tecnologias en Salud de las Américas (BRISA). y en las principales instituciones o sociedades especializadas en Fisioterapia: la Chartered Society of Physiotherapy. y la American Physical Therapy Association Además, se llevó a cabo una búsqueda manual en el motor de búsqueda Google utilizando los términos. -(motor function OR functionality OR functioning) AND (suit OR Pediasuit OR Therasuit OR Adeirsuit OR Modified suit OR Neurosuit OR Penguin suit OR Bungy suit)'. revisando en :as diez primeras páginas de resultados. a fin de poder identificar otras publicaciones de relevancia que pudiesen haber sido no identificadas durante la búsqueda en las cases de datos bibliográficas consideradas. Finalmente. serealizó una búsqueda manual en ClinicalTnals.gov para identificar ensayos clínicos aleatorizados (ECA) en curso o que no hayan sido publicados aún. RESULTADOS: Luego de la búsqueda bibliográfica hasta el 11 de julio de 2022 y la selección de evidencia. seidentificaron. dos GPC (NICE. 2012: Jackman et al.. 2021) y un ECA (Alagesan et al.. 2010). los cuales fueron considerados para su inclusión en el presente documento. CONCLUSIÓN: Por lo expuesto, el IETSI no aprueba el uso del sistema de rehabilitación intensiva dinámica con traje terapéutico en pacientes pediátricos con daño neurológico central Se recomienda a los especialistas que, en caso de identificar nueva evidencia que responda a la población de la PICO de interés, envíen sus propuestas para ser evaluadas en el marco de la Directiva N° 001-IETSI-ESSALUD-2018.

Use of health services and unmet needs among adults with cerebral palsy in Ireland.

AIM: To describe use of health services, unmet needs relating to health services, and identify factors associated with service use among adults with cerebral palsy (CP) in Ireland. METHOD: Data relating to demographics, secondary diagnoses, current use of health services and assistive devices, and unmet needs for both were obtained on adults with CP from the National Physical and Sensory Disability Database. Logistic regression was used to identify factors associated with service use. RESULTS: A total of 1268 adults with CP were included in this study. Over half were male (56%) and 78% lived with parents, siblings, or other family relatives. Physiotherapy, occupational therapy, and orthotics/prosthetic services were the most commonly used services, used by 57%, 48%, and 35% of the sample respectively. Unmet needs were highest for physiotherapy (23%) and occupational therapy services (13%). Age, sex, living arrangements, and wheelchair use were frequently associated with current service use. INTERPRETATION: Adults with CP used a wide range of health services and unmet needs were reported for all services. The findings highlight a need for planning and development of services to meet their needs, regardless of their age, mobility level, or living arrangements. WHAT THIS PAPER ADDS: Adults with cerebral palsy (CP) in Ireland used a wide range of therapeutic, respite, personal assistance, and support services. Unmet needs were highest for physiotherapy and occupational therapy services. Adults aged 25 years and above were less likely to use therapy services compared with younger adults. Adults living with parents, siblings, or family relatives were less likely to use personal assistance and physiotherapy services.

Motivators and barriers to research participation for individuals with cerebral palsy and their families.

OBJECTIVE(S): Our objective was to investigate the motivators and barriers associated with the individual or family decision to participate in cerebral palsy research. Based on this information, we offer suggestions to increase the likelihood of participation in future CP studies. METHODS: A digital survey was administered to stakeholders affected by cerebral palsy across the US. Our analysis focused on variables related to personal interests, travel, and study-specific elements. Statistical tests investigated the effects of responder type, cerebral palsy type, and Gross Motor Function Classification System level on travel and study-specific element variables. Recommendations were informed by responses reflecting the majority of respondents. RESULTS: Based on 233 responses, we found that respondents highly valued research participation (on average 88.2/100) and compensation (on average 62.3/100). Motivators included the potential for direct benefit (62.2%) and helping others (53.4%). The primary barriers to participation were schedule limitations (48.9%) and travel logistics (32.6%). Schedule limitations were especially pertinent to caregivers, while individuals with more severe cerebral palsy diagnoses reported the necessity of additional items to comfortably travel. CONCLUSIONS: Overall, we encourage the involvement of stakeholders affected by cerebral palsy in the research process. Researchers should consider offering flexible study times, accommodating locations, and compensation for time and travel expenses. We recommend a minimum compensation of $15/hour and a maximum time commitment of 4 hours/day to respect participants' time and increase likelihood of research participation. Future studies should track how attitudes toward research change with time and experience.

Brain functional reorganization in children with hemiplegic cerebral palsy: Assessment with TMS and therapeutic perspectives.

Transcranial magnetic stimulation (TMS) can be a useful tool for the assessment of the brain functional reorganization in subjects with hemiplegic cerebral palsy (HCP). In this review, we performed a systematic search of all studies using TMS in order to explore the neuroplastic changes that occur in HCP patients. We aimed at investigating the usefulness of TMS to explore cortical excitability, plasticity and connectivity changes in HCP. Children with HCP due to unilateral lesions of the corticospinal system had ipsilateral motor evoked potentials (MEPs) similar to those recorded contralaterally. TMS studies demonstrated that occupational and constraint-induced movement therapy were associated with significant improvements in contralateral and ipsilateral corticomotor projection patterns. In addition, after intensive bimanual therapy, children with HCP showed increased activation and size of the motor areas controlling the affected hand. A TMS mapping study revealed a mediolateral location of the upper and lower extremity map motor cortical representations. Deficits in intracortical and interhemispheric inhibitory mechanisms were observed in HCP. Early hand function impairment correlated with the extension of brain damage, number of involved areas, and radiological signs of corticospinal tract (CST) degeneration. Clinical mirror movements (MMs) correlated with disability and CST organization in subjects with HCP and a positive relationship was found between MMs and MEPs strength. Therefore, TMS studies have shed light on important pathophysiological aspects of motor cortex and CST reorganization in HCP patients. Furthermore, repetitive TMS (rTMS) might have therapeutic effects on CST activities, functional connectivity and clinical status in children with HCP.

Assessment of Swallowing Disorders, Nutritional and Hydration Status, and Oral Hygiene in Students with Severe Neurological Disabilities Including Cerebral Palsy.

BACKGROUND: Special needs schools (SNS) educate children and young people with major neurological disabilities who are at high risk of oropharyngeal dysphagia (OD) and malnutrition (MN). We aimed to assess the prevalence of OD, MN, dehydration (DH), and oral health (OH) in students at an SNS. METHODS: A cross-sectional observational study was conducted at SNS L'Arboç, Catalonia, Spain. We assessed (a) demographics, health status, comorbidities, and gross motor function classification system (GMFCS), (b) swallowing function, oral-motor evaluation, masticatory capacity, and EDACS classification for eating and drinking abilities, (c) nutritional and DH status (anthropometry, bioimpedance and dietary records), and (d) OH (Oral Hygiene Index Simplified). RESULTS: A total of 33 students (mean age 13.3 years; 39.4% level V of GMFCS) were included. Main diagnosis was cerebral palsy at 57.6%. All students presented OD, 90.6% had impaired safety, 68.7% were at levels II-III of EDACS, and 31.3% required PEG; furthermore, 89.3% had chronic MN, 21.4% had acute MN, 70% presented intracellular DH, and 83.9% presented impaired OH. CONCLUSION: MN, DH, OD, and poor OH are highly prevalent conditions in students with cerebral palsy and other neurological disabilities and must be specifically managed through nutritional and educational strategies. The multidisciplinary team at SNS should include healthcare professionals specifically trained in these conditions.

Addressing disparities among children with cerebral palsy: Optimizing enablement, functioning, and participation.

PURPOSE: Recognizing health disparities among children with cerebral palsy (CP) is necessary for understanding potential risk factors for CP and for implementing early and effective preventative and intervention treatments. However, there is currently little and conflicting evidence regarding the direct impact of contextual factors such as socioeconomic status (SES) for children with CP in the United States. These contextual factors include the complex social determinants of health on prematurity, comprehensive informed obstetric management for minority and vulnerable populations, and cumulative adversity disproportionately experienced by children, by gender, minority status, immigration, poverty, and structural racism. METHODS: This study presents results from a review of health disparities among children with CP, using registry and population surveillance data from Australia, Canada, Scandinavia, the United Kingdom, Ireland, Turkey, and the United States. RESULTS: The review confirmed that there are significant health disparities among children with CP, both in terms of prevalence and severity, based on factors such as SES, neighborhood disadvantage, maternal education, gender, and minority status. CONCLUSION: Strategies need to be implemented in the United States to promote enablement and functioning among children with CP who face additional health disparities. This requires a greater understanding of population groups at increased risk, comprehensive assessment and care for young children with motor delays, and systematic population counts of children and adults with CP using registries and systems of neurodevelopmental surveillance across health, education, and community rehabilitation. These efforts also require sensitivity to structural and persistent racism, stigma, trauma-informed care, and culturally sensitive community engagement. Additional efforts are also required to improve outcomes over the life course for individuals living a life with CP from a framework of enablement, self-direction, equity and social justice.

Children with Cerebral Palsy and Unmet Need for Care Coordination.

OBJECTIVE: To examine the physical and functional health of children with cerebral palsy (CP) and determine the prevalence and correlates of unmet need for health care coordination among this population. METHODS: We analyzed data from the 2016 to 2018 National Survey of Children's Health (n = 102,341). Bivariate and multivariable analyses were conducted to compare the prevalence of chronic health conditions, functional disabilities, and care coordination among children with and without CP. Multivariable logistic regression models were used to estimate the adjusted odds ratio of comorbid conditions, functional disabilities, and unmet need for care coordination. Associations between select sociodemographic factors and unmet need for care coordination were assessed. RESULTS: Children with CP had significantly higher prevalence of all the comorbid conditions and functional disabilities examined. The most prevalent health conditions among children with CP were allergies (34.2%), anxiety (26.5%), and asthma (25.1%). Notably, children with CP had higher odds of autism spectrum disorder (adjusted odds ratio [aOR] = 2.97; 95% confidence interval [CI] 1.40-6.30) and mental health conditions (aOR = 3.65; 95% CI 2.15-6.21). More than half (53.8%) of children with CP had unmet need for care coordination. They also had higher odds of unmet need for care coordination than children without CP (aOR = 2.63; 95% CI 1.69-4.10). CONCLUSION: Children with CP have high prevalence of chronic health conditions and are also more likely to have unmet need for care coordination. Given the complexity of CP, our study supports the need for robust efforts to ensure that all children with CP have effective care coordination.

Mobile applications in children with cerebral palsy. / Aplicaciones móviles en la parálisis cerebral infantil.

INTRODUCTION: Cerebral palsy (CP) is one of the most common developmental disorders. Technological development has enabled a transformation of the healthcare sector, which can offer more individualised, participatory, and preventive services. Within this context of new technology applied to the healthcare sector, mobile applications, or apps, constitute a very promising tool for the management of children with CP. OBJECTIVE: The purpose of this article is to perform a systematic review of the information published about various mobile applications either directly related to CP or with potential to be useful in the context of the disease, and to describe, analyse, and classify these applications. MATERIAL AND METHODS: A literature search was carried out to gather articles published in English or Spanish between 2011 and 2017 which presented, analysed, or validated applications either specifically designed or potentially useful for CP. Furthermore, a search for mobile applications was conducted in the main mobile application markets. CONCLUSIONS: A total of 63 applications were found in biomedical databases and mobile application markets, of which 40 were potentially useful for CP and 23 were specifically designed for the condition (11 for information, 3 for evaluation, and 9 for treatment). There are numerous mobile applications either specifically designed for or with potential to be useful in the field of CP. However, despite the existing scientific evidence, the low methodological quality of scientific articles makes it impossible to generalise the use of these tools.

Continuity of Care Is Associated with Medical Costs and Inpatient Days in Children with Cerebral Palsy.

Background: Children with cerebral palsy (CP) place a considerable burden on medical costs and add to an increased number of inpatient days in Taiwan. Continuity of care (COC) has not been investigated in this population thus far. Materials and Methods: We designed a retrospective population-based cohort study using Taiwan's National Health Insurance Research Database. Patients aged 0 to 18 years with CP catastrophic illness certificates were enrolled. We investigated the association of COC index (COCI) with medical costs and inpatient days. We also investigated the possible clinical characteristics affecting the outcome. Results: Over five years, children with CP with low COCI levels had higher medical costs and more inpatient days than did those with high COCI levels. Younger age at CP diagnosis, more inpatient visits one year before obtaining a catastrophic illness certificate, pneumonia, and nasogastric tube use increased medical expenses and length of hospital stay. Conclusions: Improving COC reduces medical costs and the number of inpatient days in children with CP. Certain characteristics also influence these outcomes.

Cerebral palsy in Canada, 2011-2031: results of a microsimulation modelling study of epidemiological and cost impacts. / La paralysie cérébrale au Canada, 2011-2031 : résultats d'une étude de modélisation par microsimulation des répercussions épidémiologiques et économiques.

INTRODUCTION: The objective of our study was to present model-based estimates and projections on current and future health and economic impacts of cerebral palsy in Canada over a 20-year time horizon (2011-2031). METHODS: We used Statistics Canada's Population Health Model (POHEM)-Neurological to simulate individuals' disease states, risk factors and health determinants and to describe and project health outcomes, including disease incidence, prevalence, life expectancy, health-adjusted life expectancy, health-related quality of life and health care costs over the life cycle of Canadians. Cerebral palsy cases were identified from British Columbia's health administrative data sources. A population-based cohort was then used to generate the incidence and mortality rates, enabling the projection of future incidence and mortality rates. A utility-based measure (Health Utilities Index Mark 3) was also included in the model to reflect various states of functional health to allow projections of health-related quality of life. Finally, we estimated caregiving parameters and health care costs from Canadian national surveys and health administrative data and included them as model parameters to assess the health and economic impact of cerebral palsy. RESULTS: Although the overall crude incidence rate of cerebral palsy is projected to remain stable, newly diagnosed cases of cerebral palsy will rise from approximately 1800 in 2011 to nearly 2200 in 2031. In addition, the number of people with the condition is expected to increase from more than 75 000 in 2011 to more than 94 000 in 2031. Direct health care costs in constant 2010 Canadian dollars were about $11 700 for children with cerebral palsy aged 1-4 years versus about $600 for those without the condition. In addition, people with cerebral palsy tend to have longer periods in poorer health-related quality of life. CONCLUSION: Individuals with cerebral palsy will continue to face challenges related to an ongoing need for specialized medical care and a rising need for supportive services. Our study offers important insights into future costs and impacts associated with cerebral palsy and provides valuable information that could be used to develop targeted health programs and strategies for Canadians living with this condition.

Valeur thérapeutique de l'oxygénothérapie hyperbare chez les enfants avec une paralysie cérébrale / The therapeutic value of hyperbaric oxygen (HBO) on children with cerebral palsy

MANDAT: L'Institut national d'excellence en santé et en services sociaux (INESSS) a reçu du ministère de la Santé et des Services sociaux (MSSS) le mandat d'évaluer la valeur thérapeutique de l'oxygénothérapie hyperbare (OHB) chez les enfants avec une paralysie cérébrale, dans le but de soutenir une décision quant à un possible ajout à la gamme de services publics. DÉMARCHE D'ÉVALUATION: Une revue systématique de la littérature a été réalisée pour repérer les données probantes en vue d'évaluer l'efficacité et l'innocuité de l'OHB ainsi que ses effets sur la qualité de vie des enfants avec une paralysie cérébrale et de leurs parents. Des métaanalyses ont été réalisées sur certains résultats d'intérêt lorsque les données scientifiques le permettaient. Des données contextuelles et expérientielles issues de la consultation d'experts (cliniciens et chercheurs) et de parties prenantes (représentants d'un regroupement de parents, d'une association soutenant les personnes atteintes et leurs proches, de centres et de cliniques hyperbares, de centres de réadaptation physique) ont été présentées. Une collecte d'information visant à capter la perspective de parents d'enfants et de jeunes adultes avec une paralysie cérébrale a été effectuée au moyen de questionnaires et d'entrevues individuelles. PARALYSIE CÉRÉBRALE ET BESOINS DE SANTÉ: La paralysie cérébrale est la principale cause d'incapacité physique et de retard de développement chez les enfants. Bien que la prévalence globale mondiale soit évaluée à 2,11 pour 1000 naissances vivantes, elle n'est pas encore précisée au Canada. La paralysie cérébrale désigne un ensemble de troubles du développement du mouvement et de la posture, qui sont responsables de limitations d'activité. Ces troubles sont causés par des atteintes neurologiques non progressives survenues au cours du développement du cerveau pendant la grossesse, lors de la naissance ou durant les premières semaines de vie. Diverses affections y sont souvent associées : troubles de la cognition, du langage, de la perception ou du comportement; atteintes sensorielles; épilepsie; problèmes musculosquelettiques secondaires et de la fonction oromotrice. Aucun traitement curatif de la paralysie cérébrale n'est disponible actuellement. Chaque personne touchée présente un profil clinique et un degré de gravité de l'atteinte différents, ce qui complexifie la démarche d'évaluation diagnostique. La prise en charge des enfants est effectuée par une équipe clinique interdisciplinaire (médicale et de réadaptation physique) en partenariat avec les parents et vise l'amélioration de la fonction musculaire, de la mobilité articulaire, des capacités d'expression verbale ainsi que des corrections orthopédiques (correction de déformations et de désalignements). Les conséquences significatives de la paralysie cérébrale sur la qualité de vie de l'enfant et des parents ont été illustrées. Les parents interviewés ont mis en lumière leur grande implication dans les soins et les services à donner à leur enfant. Bien qu'ils soient généralement satisfaits des soins et des services reçus, des préoccupations relatives à la variabilité de l'offre de services de réadaptation ont été soulevées. Une bonification des services de soutien, de répit, d'information et d'aide financière est souhaitée par certains parents. De plus, la plupart d'entre eux gardent espoir qu'un traitement puisse contribuer encore plus à l'évolution positive de l'état de leur enfant et à améliorer leur qualité de vie. OXYGÉNOTHÉRAPIE HYPERBARE: L'oxygénothérapie hyperbare (OHB) est une technologie qui permet d'administrer de l'oxygène pur ou un mélange de gaz suroxygéné à une ou plusieurs personnes à l'intérieur d'un caisson ou d'une chambre pressurisée (pression supérieure à la pression atmosphérique standard ­ 1 atmosphère absolue [ATA]). Santé Canada reconnaît actuellement l'efficacité de l'OHB pour traiter 14 types d'affection, mais la paralysie cérébrale n'en fait pas partie. Au Québec, comme dans la vaste majorité des systèmes de santé comparables, le traitement de la paralysie cérébrale par OHB n'est pas reconnu et ne peut pas être prescrit. Les deux centres hospitaliers (CH) du Québec qui sont équipés de chambres hyperbares à parois rigides ne peuvent traiter que les patients qui répondent aux indications reconnues au Canada. CONTEXTE D'UTILISATION AU QUÉBEC: Au Québec, le recours à l'OHB chez les enfants avec une paralysie cérébrale remonte aux années 90. Au fil des ans, plusieurs parents ont choisi d'avoir recours à l'OHB pour traiter leur enfant. Quelques cliniques privées offrent ce traitement aux enfants avec une paralysie cérébrale et des entreprises privées louent ou vendent des caissons portatifs à parois souples. Ce type de caisson est généralement utilisé à domicile sans apport d'oxygène additionnel et à une pression d'air ambiant légèrement plus élevée que la pression atmosphérique (généralement à 1,3 ATA). Cette intervention est désignée davantage par AHB (air légèrement pressurisé; en anglais hyperbaric air ou HBA) que par OHB. Si les avis des professionnels de la santé sont partagés quant à l'utilisation de l'OHB ou de l'AHB, des parents utilisateurs interviewés se sont dits satisfaits des effets qu'ils ont perçus chez leur enfant. Bien que le fonctionnement des chambres hyperbares à parois rigides homologuées par Santé Canada soit considéré comme sécuritaire pour autant que les précautions de sécurité qui s'imposent soient respectées, ce n'est pas le cas des enceintes hyperbares à parois souples, lesquelles ne sont pas homologuées par Santé Canada. RÉSULTATS: La revue systématique de la littérature a permis de retenir dix études pour évaluer la valeur thérapeutique de l'OHB chez les enfants vivant avec une paralysie cérébrale, soit deux essais cliniques randomisés (ECR) dont la qualité méthodologique est jugée adéquate (moyenne et élevée), et huit études de faible qualité méthodologique comportant plusieurs limites, soit deux ECR, une étude comparative avant-après (ECAA) et cinq études non comparatives avant-après (ENCAA). De plus, trois évaluations des technologies de la santé (ETS) ont été publiées sur l'utilisation de l'OHB chez les enfants avec une paralysie cérébrale et aucune ne rapporte une efficacité à cet égard. Aucun des guides de pratique clinique repérés ne reconnaît la paralysie cérébrale comme une indication d'utilisation de l'OHB. APPRÉCIATION DE LA VALEUR THÉRAPEUTIQUE: Depuis la publication du rapport de l'Agence d'évaluation des technologies et des modes d'intervention en santé (AETMIS) en 2007 sur la place de l'OHB dans la prise en charge de la paralysie cérébrale, six nouvelles études ont été publiées. À la lumière de l'évaluation de l'INESSS et des experts consultés, ces nouvelles données ont une portée limitée et n'éclairent pas davantage sur l'efficacité et l'innocuité de l'OHB. Les données scientifiques proviennent d'études dont la plupart comportent plusieurs limites. Tant les profils des sujets que les protocoles d'OHB (voire d'AHB) utilisés présentent une diversité qui rend ardue la comparaison entre études. Les questionnements et les préoccupations au regard des études publiées sont multiples : pertinence des groupes témoins ou du traitement simulé utilisés dans les ECR; limites des plans d'étude; peu d'ajustement des groupes en fonction des principaux facteurs de confusion. Les parents consultés perçoivent de leur côté des effets positifs des traitements, surtout sur le plan cognitif; des effets qui sont moins évalués dans les études publiées et qui s'attardent davantage sur la motricité globale. Bien que peu d'effets indésirables associés à l'OHB ou à l'AHB soient rapportés dans les études ainsi que par diverses parties prenantes rencontrées et par des parents utilisateurs interviewés, des préoccupations subsistent, autant chez les agences réglementaires que chez des professionnels de la santé consultés, y compris des spécialistes en médecine hyperbare. Aucune étude n'a rapporté de données sur la qualité de vie des enfants, alors qu'il s'agit de l'une des données importantes dans l'évaluation d'une intervention telle que l'OHB chez les enfants avec une paralysie cérébrale. Par conséquent, la démonstration de la valeur thérapeutique n'a pu être établie à la lumière des données disponibles. RECOMMANDATION DE l'INESSS: À la lumière des données scientifiques, contextuelles et expérientielles colligées, et en l'absence de démonstration d'une valeur thérapeutique, l'INESSS est d'avis que l'ajout de l'OHB ou de l'AHB à la gamme de services publics pour traiter les enfants avec une paralysie cérébrale ne constitue pas une option juste et raisonnable.

MANDATE: The Institut national d'excellence en santé et en services sociaux (INESSS) was mandated by the Ministère de la Santé et des Services sociaux (MSSS) to assess the therapeutic value of hyperbaric oxygen (HBO) on children with cerebral palsy for the purpose of supporting a decision with respect to possibly adding this form of therapy to the range of public services. ASSESSMENT PROCESS: A systematic literature review was conducted to identify evidence-based findings relevant to the evaluation of the efficacy and innocuity of HBO and its impact on the quality of life of children with cerebral palsy and their parents. Meta-analyses were performed on outcomes of interest when the scientific data so permitted. Contextual and experiential data gathered through consultations with experts (clinicians and scientists) and stakeholders (representatives of a group of parents, an association supporting people with cerebral palsy and their relatives, hyperbaric centers and clinics, physical rehabilitation centers) were presented. Information was gathered from parents of children and young adults with cerebral palsy through the conduct of questionnaires and individual interviews with the aim of understanding their perspective and views. CEREBRAL PALSY AND HEALTH NEEDS: Cerebral palsy is the most common cause of physical disability and developmental delay in children. While the global prevalence is estimated at 2.11 per 1,000 live births, that of the Canadian population has not yet been defined. Cerebral palsy is a group of developmental disorders affecting movement and posture and responsible for activity limitation. These disorders are caused by non-progressive neurological dysfunctions, which occurred during the baby's brain development during pregnancy, at birth or in the newborn's first weeks of life. Various disorders are associated with cerebral palsy: cognitive, speech, perception or behavioral impairment; sensorial dysfunctions; epilepsy; and secondary musculoskeletal and oral-motor function problems. There exists no curative treatment for cerebral palsy. Clinical profiles and disorder severity levels differ from one person with cerebral palsy to another, thus making diagnostic assessments more complex. Care management of children with clinical palsy is provided by interdisciplinary clinical teams (medical and physical rehabilitation) in partnership with the parents. It aims at improving the child's muscular function, articular mobility and oral expression capacity and at making orthopedic corrections (correction of malformation and malalignment). Cerebral palsy has profound effects on the quality of life of the children and their parents as highlighted through interviews with parents. The parents interviewed clearly indicated their full involvement in the care and services to be given to their child. While they are generally satisfied with the care and services provided, they voiced concerns on the issue of variability of rehabilitation services. Some parents expressed a wish to see support, respite, information and financial aid services enhanced. Most of them still remain hopeful that a treatment will contribute even more to the positive evolution of their child's condition and quality of life. RESULTS: The systematic review of the literature on this topic identified ten studies, which helped assess the therapeutic value of HBO treatment on children with cerebral palsy: two (2) randomized clinical trials (RCT), the methodology of which was found to be of adequate quality (average to high); and eight (8) studies, the methodology of which was found to be of poor quality due to their many limitations: two (2) RCTs, one (1) pre-post comparative study (PPCS), and five (5) pre-post non-comparative studies (PPNCS). Three (3) health technology assessments on HBO treatment on children with cerebral palsy were published, but none of them has reported on its effectiveness. None of the clinical practice guidelines identified recognized cerebral palsy as an indication to the use of HBO treatment. THERAPEUTIC VALUE APPRECIATION: After the Agence d'évaluation des technologies et des modes d'intervention en santé (AETMIS) published a report in 2007 on HBO treatment of cerebral palsy, six (6) studies were published. In the light of the assessment by the INESSS and experts consulted, the new data are limited in scope and fail to shed further light on HBO effectiveness and innocuity. The scientific data were compiled from studies that, in most cases, have many limitations. The profiles of the subjects under study and the HBO (or HBA) protocols used are very diverse, thus making studies difficult to compare. There are multiple questions and concerns with regard to the studies published: pertinence of control groups or of simulated (sham) treatment used in RCTs; limits of study plans; and limited adjustment for main confounding variables. For their part, the parents consulted find the treatment to have positive effects on their child, in particular on the cognitive level; these effects were assessed to a lesser degree in the studies published, which focused more on gross motor skills. While only a few undesirable effects associated with HBO and HBA treatment are reported in the studies or by the stakeholders and user parents consulted, concerns persist among the regulatory agencies and health professionals consulted (including hyperbaric physicians). Not a single study reported data on the quality of life of children despite the importance of this factor in the assessment of HBO treatment on children with cerebral palsy. Consequently, demonstration of the therapeutic value has failed to be established on the basis of the data available. RECOMMENDATION OF THE INESSS In the light of the scientific, contextual and experiential data gathered and given the lack of evidence of any therapeutic value, the INESSS considers that adding HBO or HBA to the range of public services to treat children with cerebral palsy is not a fair and reasonable option.