Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil

Abstract Objectives To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children. Methods It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used. Results Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37). Conclusions The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Impact of World Cerebral Palsy Day on Public Interest in Brazil: Evidence from Internet Search Data.

AIM: This study investigated the impact of the World Cerebral Palsy Day (WCPD) campaign on the public interest using Google Trends Analysis data in Brazil. METHODS: Google Trends was used to collect Relative Search Volume (RSV) data for "cerebral palsy" from 2004 to 2011 (control years) and 2012 to 2022 (WCPD years). RSV during the 4 weeks around WCPD (period of interest) was compared with the rest of the year (control period) in each timeframe. Regional RSV, search queries, and main topics were also investigated. RESULTS: RSV increased by 62.22% from pre-campaign to campaign period. During the WCPD years, a 21.36% RSV increase occurred in campaign weeks, with an average difference of 12.16 (95% CI: 1.74, 22.58); notably in in the last five years in the southeast 9.47 (95% CI: 2.93, 16.01) and south 8.66 (95% CI: 1.66, 15.66) macro-regions. CONCLUSION: The campaign has fulfilled its role, but targeting more vulnerable areas could further amplify its impact.

Riboflavin as a potential new therapeutic agent for perinatal encephalopathies caused by cerebral oxygen deprivation.

Objective: This letter to the editor presents suggestions for the therapeutic use of riboflavin in perinatal brain lesions caused by oxygen deprivation.Methods: Clinical and preclinical studies using riboflavin conjugated with other components for the treatment of cerebral oxygen deprivation were included in the discussion.Results: Oxygen deprivation is predisposed by anoxia, hypoxia, or ischemia and causes severe early central damage, including sensorimotor impairment. At the moment, these lesions lack effective and affordable therapies. We present studies demonstrating the neuroprotective effects of riboflavin-containing drugs to treat children affected by hypoxic perinatal injuries.Discussion: This article suggests conducting preclinical studies to elucidate the potential isolated effects of riboflavin on the pathogenesis of perinatal brain injury caused by oxygen deprivation, by presenting routes for future clinical strategies for the prevention or treatment of perinatal encephalopathies.

Functional classification systems in Brazilian children with cerebral palsy: Reliability and associations between functional levels.

Children with Cerebral palsy (CP) present movement and posture disorders. The Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication Function Classification System (CFCS), Eating and Drinking Ability Classification System (EDACS), and Visual Function Classification System (VFCS) enhance the understanding of their performance. We verified inter-rater reliability and associations between the classification levels. Physical therapists classified 100 Brazilian children with CP (3-17 years) according to GMFCS, MACS, CFCS, EDACS, and VFCS. To evaluate inter-rater reliability (Intraclass Correlation Coefficient-ICC) two independent examiners concurrently assessed a subset of 60 participants. According to Spearman's correlation coefficients, there were associations between GMFCS/MACS (r = 0.81), GMFCS/CFCS (r = 0.70), MACS/CFCS (r = 0.73), GMFCS/VFCS (r = 0.61), MACS/VFCS (r = 0.61), CFCS/EDACS (r = 0.58), CFCS/VFCS (r = 0.50), and EDACS/VFCS (r = 0.45) (p < .05). The inter-rater reliability ranged from excellent (ICC = 0.93-0.99) to good (ICC = 0.89), p < .05. The classification systems are reliable, and the levels associated with each other in Brazilian children, especially the GMFCS, MACS, and CFCS.

Rehabilitation Intervention Is Associated With Improved Neurodevelopment and Modulation of Inflammatory Molecules in Children With Cerebral Palsy.

AIM: To evaluate the effects of systematic rehabilitation on both the neuropsychomotor development, and on the peripheral response from immunological and neuroplastic mediators in children with cerebral palsy. METHODS: This is a prospective cohort study with 90 children with cerebral palsy at 18 months of age. Sixty children received rehabilitation for 6 months, and they were compared to 30 children that were placed in the waiting list. Peripheral biomarkers and neuropsychomotor parameters were compared between the Rehab vs the Nonrehab groups at baseline and at 6 months. RESULTS: Results showed higher Bayley III scores in the Rehab group, with significant differences in inflammatory and neurotrophic biomarkers between groups. Rehabilitation was associated to decreased levels of IL-12p70, IL-6, IL-1ß, CXCL8 IL-8, and CXCL9/MIG and increased levels of BDNF and GDNF. Nonrehab children had stable immune molecule levels but decreased BDNF levels over time. CONCLUSION: Rehabilitation improved neurodevelopment parameters and modulated levels of inflammatory (↓) and neurotrophic (↑) biomarkers.

Direct healthcare costs for people with cerebral palsy in the Brazilian unified health system between 2015 and 2019.

BACKGROUND: Estimate the costs of inpatient and outpatient care for people with Cerebral Palsy (CP) in Brazil. RESEARCH DESIGN AND METHODS: Health records of people with CP in the Hospital and Outpatient Information Systems of Brazil between 2015 and 2019 were analyzed. Variables analyzed were gender, age, ICD, Intensive Care Unit (ICU) use, total cost, and ICU cost. Costs were adjusted for inflation and converted to dollars. Linear regression analysis was performed to investigate the association between social and clinical variables and direct costs. RESULTS: A total direct cost of approximately $166 million to the National Health System was identified, with $7.08 million/year and $26.1 million/year of inpatient and outpatient costs, respectively. The healthcare was primarily for children up to 14 years of age. The ICD 'spastic quadriplegic CP' received the most attendance. Rehabilitation was responsible for 75% of the outpatient care, with physiotherapy standing out. Increased age, use of ICU, and the types of CP are related to increased cost. CONCLUSIONS: Healthcare for people with CP produced expressive costs for the Brazilian public health system, mainly with outpatient procedures and rehabilitation, with children being the most attended. Estimating these costs assist in better resource allocation for more effective healthcare provision.

Employing Siamese Networks as Quantitative Biomarker for Assessing the Effect of Dolphin-Assisted Therapy on Pediatric Cerebral Palsy.

This study explores the potential of using a Siamese Network as a biomarker for assessing the effectiveness of Dolphin-Assisted Therapy (DAT) in children with Spastic Cerebral Palsy (SCP). The problem statement revolves around the need for objective measures to evaluate the impact of DAT on patients with SCP, considering the subjective nature of traditional assessment methods. The methodology involves training a Siamese network, a type of neural network designed to compare similarities between inputs, using data collected from SCP patients undergoing DAT sessions. The study employed Event-Related Potential (ERP) and Fast Fourier Transform (FFT) analyses to examine cerebral activity and brain rhythms, proposing the use of SNN to compare electroencephalographic (EEG) signals of children with cerebral palsy before and after Dolphin-Assisted Therapy. Testing on samples from four children yielded a high average similarity index of 0.9150, indicating consistent similarity metrics before and after therapy. The network is trained to learn patterns and similarities between pre- and post-therapy evaluations, in order to identify biomarkers indicative of therapy effectiveness. Notably, the Siamese Network's architecture ensures that comparisons are made within the same feature space, allowing for more accurate assessments. The results of the study demonstrate promising findings, indicating different patterns in the output of the Siamese Network that correlate with improvements in symptoms of SCP post-DAT. Confirming these observations will require large, longitudinal studies but such findings would suggest that the Siamese Network could have utility as a biomarker in monitoring treatment responses for children with SCP who undergo DAT and offer them more objective as well as quantifiable manners of assessing therapeutic interventions. Great discrepancies in neuronal voltage perturbations, 7.9825 dB on average at the specific samples compared to the whole dataset (6.2838 dB), imply a noted deviation from resting activity. These findings indicate that Dolphin-Assisted Therapy activates particular brain regions specifically during the intervention.

Neural Correlates of Mobility in Children with Cerebral Palsy: A Systematic Review.

Recent advances in brain mapping tools have enabled the study of brain activity during functional tasks, revealing neuroplasticity after early brain injuries and resulting from rehabilitation. Understanding the neural correlates of mobility limitations is crucial for treating individuals with cerebral palsy (CP). The aim is to summarize the neural correlates of mobility in children with CP and to describe the brain mapping methods that have been utilized in the existing literature. This systematic review was conducted based on PRISMA guidelines and was registered on PROSPERO (n° CRD42021240296). The literature search was conducted in the PubMed and Embase databases. Observational studies involving participants with CP, with a mean age of up to 18 years, that utilized brain mapping techniques and correlated these with mobility outcomes were included. The results were analyzed in terms of sample characteristics, brain mapping methods, mobility measures, and main results. The risk of bias was evaluated using a checklist previously created by our research group, based on STROBE guidelines, the Cochrane Handbook, and the Critical Appraisal Skills Programme (CASP). A total of 15 studies comprising 313 children with CP and 229 with typical development using both static and mobile techniques met the inclusion criteria. The studies indicate that children"with'CP have increased cerebral activity and higher variability in brain reorganization during mobility activities, such as gait, quiet standing, cycling, and gross motor tasks when compared with children with typical development. Altered brain activity and reorganization underline the importance of conducting more studies to investigate the neural correlates during mobility activities in children with CP. Such information could guide neurorehabilitation strategies targeting brain neuroplasticity for functional gains.

Early-life malnutrition role in memory, emotional behavior and motor impairments in early brain lesions with potential for neurodevelopmental disorders: a systematic review with meta-analysis.

OBJECTIVES: The present study aims to evaluate the impact of early exposure to brain injury and malnutrition on episodic memory and behavior. METHODS: For this, a systematic review was carried out in the Medline/Pubmed, Web of Science, Scopus, and LILACS databases with no year or language restrictions. RESULTS: Initially, 1759 studies were detected. After screening, 53 studies remained to be read in full. The meta-analysis demonstrated that exposure to double insults worsens episodic recognition memory but does not affect spatial memory. Early exposure to low-protein diets has been demonstrated to aggravate locomotor and masticatory sequelae. Furthermore, it reduces the weight of the soleus muscle and the muscle fibers of the masseter and digastric muscles. Early exposure to high-fat diets promotes an increase in oxidative stress and inflammation in the brain, increasing anxiety- and depression-like behavior and reducing locomotion. DISCUSSION: Epigenetic modifications were noted in the hippocampus, hypothalamus, and prefrontal cortex depending on the type of dietetic exposure in early life. These findings demonstrate the impact of the double insult on regions involved in cognitive and behavioral processes. Additional studies are essential to understand the real impact of the double insults in the critical period.

Comprehensive assessment of periodontal health in cerebral palsy: A systematic review and meta-analysis.

AIMS: Cerebral palsy (CP) is the term for a set of neurological disorders resulting from brain damage that impairs motor function. The aim of the present study was to perform a systematic review of the literature to determine whether individuals with CP are at a greater risk of negative periodontal health outcomes compared to those without CP. METHODS: This study followed the recommendations of the MOOSE guidelines. Electronic searches were conducted in the PubMed, Web of Science, Scopus, Ovid, Embase, and PsycInfo databases. Observational studies assessing periodontal outcomes in individuals with CP were included. Risk of bias was appraised using the Newcastle-Ottawa scale. Meta-analyses were conducted and the results were presented using standardized mean differences (SMD), odds ratios (OR), and 95% confidence intervals (CI). The strength of the evidence was also assessed. RESULTS: A total of 316 records were retrieved from the electronic databases, 17 of which were included in the qualitative synthesis. Meta-analyses revealed significantly higher scores in individuals with CP compared to those without CP for the oral hygiene index (SMD = 0.47 [95% CI: 0.17-0.78, I2 = 80%), gingival index (SMD = 0.75 [95% CI: 0.39-1.11], I2 = 79%), plaque index (SMD = 0.70 [95% CI: 0.07-1.33], I2 = 93%), and calculus index (SMD = 0.98 [95% CI: 0.76-1.20], I2 = 0%). However, no significant difference was found between groups for the prevalence of gingivitis (OR = 1.27 [95% CI: 0.28-5.66], I2 = 93%). The risk of bias for the outcome assessment and statistical tests was low. The strength of the evidence was deemed very low. CONCLUSION: Individuals with CP may experience more significant negative periodontal health outcomes compared to those without CP.

Preoperative gastric volume assessment using ultrasound in cerebral palsy pediatric patients: a prospective observational study.

BACKGROUND: Although cerebral palsy is a risk factor for aspiration, there is insufficient research on residual gastric volume after preoperative fasting in children with cerebral palsy. We evaluated the incidence of a full stomach by ultrasound assessment of the gastric volume in children with cerebral palsy who underwent orthopedic surgery after preoperative fasting. METHODS: The patients fasted for 8 h for solid foods and 2 h for clear liquids. We obtained the gastric antral cross-sectional area using ultrasound in the semi-recumbent and right lateral decubitus positions. A calculated stomach volume > 1.5 mL.kg-1 was considered as full, which poses a high aspiration risk. The primary outcome was the incidence of full stomach, and the secondary outcomes were the qualitative gastric volume, correlation of disease severity categorized according to the Gross Motor Function Classification System with the residual gastric volume, gastric volume per body weight, and qualitative gastric volume. RESULTS: Thirty-seven pediatric patients with cerebral palsy, scheduled for elective orthopedic surgery, were included for analysis. Full-stomach status was observed in none, and the gastric volume per body weight was 0.5 (0.4-0.7) mL.kg-1. No significant differences were observed in the residual gastric volume (p = 0.114), gastric volume per body weight (p = 0.117), or qualitative grade of gastric volume (p = 0.642) in relation to disease severities. CONCLUSION: Children with cerebral palsy who fasted preoperatively had empty or nearly empty stomachs. Further studies are required to determine the optimal fasting duration for such children.

Effect of cannabidiol as a neuroprotective agent on neurodevelopmental impairment in rats with neonatal hypoxia.

OBJECTIVE: This study aims to investigate the neuroprotective effects of cannabidiol (CBD) on neurodevelopmental impairments in rats subjected to neonatal hypoxia, specifically examining its potential to mitigate motor and sensory deficits without the confounding effects of ischemia. METHODS: Neonatal Sprague-Dawley rats were allocated to one of four groups: Control, Control-CBD, Hypoxia, and Hypoxia-CBD. Hypoxia was induced on postnatal days 0 and 1. CBD (50 mg/kg) was administered orally for 14 days starting at postnatal day 0. Neurodevelopmental outcomes were assessed using the Neurodevelopmental Reflex Testing in Neonatal Rat Pups scale and the Revised Neurobehavioral Severity Scale for rodents. Statistical analyses were conducted using two-way and one-way ANOVA, with Tukey's post-hoc tests for group comparisons. RESULTS: Pup weights were recorded on specified postnatal days, with no significant differences observed across the groups (p = 0.1834). Significant neurological impairments due to hypoxia were noted in the Control group compared to the Hypoxia group, particularly in hindlimb grasping on postnatal day 3 (p = 0.0025), posture on postnatal day 12 (p = 0.0073), and in general balance and sound reflex on postnatal day 20 (p = 0.0016 and p = 0.0068, respectively). Additionally, a statistically significant improvement in posture was observed in the Hypoxia-CBD group compared to the Hypoxia group alone (p = 0.0024). CONCLUSION: Our findings indicate that CBD possesses neuroprotective properties that significantly counteract the neurodevelopmental impairments induced by neonatal hypoxia in rats. This study not only supports the therapeutic potential of CBD in managing conditions characterized by neurodevelopmental challenges due to hypoxia but also underscores the necessity for further investigation into the specific molecular mechanisms driving CBD's neuroprotective effects. Further research is essential to explore CBD's clinical applications and its potential role in treating human neurodevelopmental disorders.

Representaciones sociales de la parálisis cerebral en madres de niños que asisten a un centro de neurorrehabilitación en Cali-Colombia / Social representations of cerebral palsy in mothers of children who attend a neurological rehabilitation center in Cali-Colombia / Representações sociais da paralisia cerebral em mães de crianças que frequentam um centro de reabilitação neurológica em Cali-Colômbia

Resumen Objetivo: en Colombia, existe una brecha importante entre la reglamentación relacionada con el reconocimiento de derechos, inclusión y mecanismos para la protección de los niños con discapacidad y la implementación de la norma. En este contexto, el objetivo de este estudio fue explorar las representaciones sociales de la parálisis cerebral en madres de niños con parálisis cerebral. Metodología: se realizó un estudio cualitativo bajo el enfoque estructuralista de las representaciones sociales para caracterizar el contenido y la organización de las representaciones sociales de la parálisis cerebral de madres de niños con parálisis cerebral que consultaron a un centro de neurorrehabilitación en Cali, Colombia entre enero y febrero de 2022. Como técnicas de recolección se utilizaron el listado libre y el cuestionario de pares. Resultados: para las madres la parálisis cerebral es la alteración de movimiento que junto con la dificultad de aprendizaje y comunicación generan gran demanda de atención por parte del cuidador acompañado de sentimientos de resignación ante las secuelas de la lesión en el cerebro y la discriminación social percibida. Conclusiones: las representaciones sociales sobre la parálisis cerebral dejan percibir una visión negativa y poco esperanzadora de recuperación, así como resiliencia por parte de los cuidadores.

Abstract Objective: In Colombia, there is a significant gap between the regulations related to the recognition of rights, inclusion, and mechanisms for the protection of children with disabilities and the implementation of the law. In this context, the aim of this study was to explore the social representations of cerebral palsy in mothers of children with cerebral palsy. Methodology: We collected information from mothers with children with cerebral palsy who consulted a neurorrehabilitation center in Cali, Colombia between January and February 2022 using the free list and the peer questionnaire. Results: For mothers, cerebral palsy is a movement disorder that, together with learning and communication difficulties, generates a great demand for care by the caregiver, accompanied by feelings of resignation in the face of the consequences of the brain injury and perceived social discrimination. Conclusions: The social representations on cerebral palsy reveal a negative and hopeless view of recovery, as well as resilience on the part of caregivers.

Resumo Objetivo: Na Colômbia, existe uma brecha importante entre a regulamentação relacionada ao reconhecimento de direitos, inclusão e mecanismos para a proteção dos meninos com deficiência e a implementação da norma. Neste contexto, o objetivo deste estúdio pode explorar as representações sociais da paralisia cerebral em mães de crianças com paralisia cerebral. Metodologia: Recolha a informação das madres com crianças com paralisia cerebral que consulte um centro de neurorreabilitação em Cali, Colômbia entre enero e febrero de 2022 usando o listado livre e o guia de pares. Resultados: Para as mães a paralisia cerebral é a alteração de movimento que se junta com a dificuldade de aprendizagem e comunicação gera grande demanda de atenção por parte do cuidador acompanhado de sentimentos de resignação antes das seqüelas da lesão no cérebro e na discriminação percepção social. Conclusões: Las representaciones sociales sobre la paralisis cerebral dejan ver una visão negativa y poco esperanzadora de recuperação, así como resiliência de parte de los cuidadores.

Family expectations and demand for home-based videogaming therapy in children with cerebral palsy in Costa Rica: a mixed methods study.

PURPOSE: To understand the expectations and demand for a movement-tracking videogame (Bootle Blast) for home-based, upper limb (UL) rehabilitation among Costa Rican children with cerebral palsy (CP). METHODS: Data were collected via telephone screening (demand) and child-parent dyads Zoom interviews (expectations). Descriptive statistics and data transformation were used to report on demand success criteria (i.e., recruitment rate, having an appropriate screen and space to play, setting a weekly play time goal (PTG) ≥45 min, identifying one UL therapy goal). The DEPICT model for collaborative qualitative analysis was used in the thematic analysis of interview data. RESULTS: Fifteen dyads participated (1.6 ± 1 recruited/month). All had a flat-screen TV in a suitable location to play, were able to set a UL therapy goal, and established PTGs ranging from 45-120 min per week. Identified themes were: 1) Socio-cultural factors heighten demand, 2) Feelings of hope prevail for the intervention, and 3) Collaborative goal setting supports realistic expectations for Bootle Blast. CONCLUSIONS: Dyads had positive and realistic expectations about implementing the proposed videogaming intervention. This study provides insights on tailoring a family-centered, therapy gaming intervention to improve access to motor rehabilitation for children with CP in rural/remote settings and low-middle income countries.

Costa Rican children have limited access to upper limb rehabilitation due to a combination of economic barriers, societal factors and the family context.Costa Rican children with cerebral palsy and their families expected home-based therapy gaming to be adaptable to their routines and aligned with their interests.Families perceived therapy gaming interventions as a promising path to access, participation, and enjoyment of at home upper limb motor therapy.

Severe rigid hip flexion-abduction contracture in cerebral palsy: a case report and review of the literature.

INTRODUCTION: severe, rigid hip abduction deformity in individuals with cerebral palsy (CP) is an exceptionally uncommon condition. This posture hinders the positioning in the wheelchair and the completion of basic activities of daily living (ADL). Addressing such severe deformities can be quite challenging. MATERIAL AND METHODS: a 14-year-old male, with spastic-dystonic quadriplegic CP, developed rigid and severe flexion-abduction contractures in both hips, characterized by 90 degrees of flexion and 100 degrees of abduction. These contractures severely impeded his ability to comfortably use a wheelchair and even pass through doorways. Performing basic ADLs became a significant challenge for both the patient and his caregivers. RESULTS: the treatment approach involved a two-stage surgical procedure, one for each hip, with a two-month interval between them. An extensive release of the fascia latae, gluteus maximus, external rotators, and hip flexors; in combination with a proximal femur osteotomy were performed. To maintain the corrections achieved, long-leg casts connected with two bars were employed, followed by orthotic support and physiotherapy. Following the procedure, lower limb adduction was achieved, and the patient and caregivers were highly satisfied, as ADLs and basic caregiving had been greatly facilitated. CONCLUSIONS: while the available literature on the management of severe rigid abduction hip contractures in non-ambulatory CP patients is limited, and treatment options are often complex, the present case underscores the effectiveness of a comprehensive approach involving soft tissue release and bone surgery. Achieving a more favorable wheelchair positioning and facilitating basic ADLs and care represents a significant success for patients and families.

INTRODUCCIÓN: la deformidad severa y rígida en abducción de cadera en individuos con parálisis cerebral (PC) es una condición infrecuente. Esta postura dificulta el posicionamiento en la silla de ruedas y la realización de actividades básicas de la vida diaria (AVD). El tratamiento de estas deformidades tan severas puede ser todo un reto. MATERIAL Y MÉTODOS: varón de 14 años, con PC tetrapléjica espástica-distónica, que desarrolló contracturas rígidas y severas de flexión-abducción en ambas caderas, caracterizadas por 90 grados de flexión y 100 grados de abducción. Estas contracturas impedían gravemente su capacidad para utilizar cómodamente una silla de ruedas e incluso pasar por las puertas. La realización de actividades básicas de la vida diaria se convirtió en un reto importante tanto para el paciente como para sus cuidadores. RESULTADOS: el tratamiento consistió en una intervención quirúrgica en dos fases, una para cada cadera, con un intervalo de dos meses entre ellas. Se realizó una amplia liberación de la fascia lata, el glúteo mayor, los rotadores externos y los flexores de la cadera; en combinación con una osteotomía proximal del fémur. Para mantener las correcciones conseguidas, se emplearon escayolas de pierna larga conectadas con dos barras, seguidas de soporte ortésico y fisioterapia. Tras la intervención, se consiguió la aducción de los miembros inferiores y el paciente y los cuidadores se mostraron muy satisfechos, ya que se habían facilitado en gran medida las AVD y los cuidados básicos. CONCLUSIONES: aunque la bibliografía disponible sobre el tratamiento de las contracturas rígidas graves de la cadera en abducción en pacientes no deambulantes con PC es limitada, y las opciones de tratamiento suelen ser complejas, el presente caso subraya la eficacia de un enfoque integral que incluye la liberación de los tejidos blandos y la cirugía ósea. Conseguir una posición más favorable en la silla de ruedas y facilitar las AVD básicas y los cuidados representa un éxito significativo para los pacientes y sus familias.

Looking beyond Body Structure and Function: ICF Foci and Who Is Being Assessed in Research about Adolescents and Young Adults with Cerebral Palsy-A Scoping Review.

PURPOSE: The purpose of this study is to summarize the ICF foci, looking beyond body structures and function, and to analyze who has been assessed in research about adolescents and young adults (AYAs) with CP in the phase of transition to adulthood. METHOD: Medline, EMBASE, PsycINFO, and CINAHL databases were searched using terms related to cerebral palsy, adolescents/young adults, health development, participation, and independence. Studies including youth with CP (13-30 years old) published in English from 2014 to 2021 were considered. The methods of assessment reported in the included studies were used to identify the ICF foci and who was assessed. RESULTS: In this study, 86 studies were reviewed. The main ICF foci are activity and participation (51% of the studies), personal factors (23%), ICF not covered (14%), ICF not defined (9%), with environmental factors being the least focused ICF component (3%). Most studies assessed AYAs directly (49% of studies). CONCLUSIONS: Activity- and participation-related constructs are the leading research focus of studies, and more attention is needed concerning environmental factors. AYAs are the main source of information, and the perspectives of other key figures are also being valued. To bridge the gap between child and adult health care, a broader view of health development and approaches to explore AYA developmental issues must be taken.

Cross-cultural adaptation of the Rotterdam Transition Profile to Brazilian Portuguese: measuring autonomy in participation of Brazilian youth with cerebral palsy.

BACKGROUND: Autonomy in participation of young adults with cerebral palsy (CP) is not well understood due to the lack of appropriate instruments, especially for the Brazilian population. The Rotterdam Transition Profile (RTP) categorizes autonomy in Participation (education, employment, finances, housing, leisure, intimate relationships, sexuality, transportation) and Health Services (care demands, services and aids, and rehabilitation services) domains. OBJECTIVES: To cross-culturally adapt the RTP for use in Brazil, and to describe the levels of autonomy in participation and associated factors of Brazilian youth with CP. METHODS: RTP was translated and content validity was investigated through an expert panel (n = 4 researchers and n = 4 clinicians); 30 adolescents and young adults with CP provided data for construct validity and internal consistency analysis. To analyze influencing factors, 56 youth with CP, mean age 25 years (SD = 6.9 years), with good cognitive level remotely responded to the RTP, sociodemographic information, and functional classifications (gross motor, manual ability). RESULTS: Following translation, content and construct validity were established, with changes made to improve the clarity of items. Cronbach's alpha (0.82) was considered good and test-reliability was fair to good for most items. High levels of autonomy were found in the areas of Leisure and Rehabilitation, with the lowest proportion of participants with autonomy in Housing, Intimate Relationships, and Finances. Autonomy in participation was associated with age, gross motor and manual ability classifications, and with context-related factors. CONCLUSION: The Brazilian Portuguese version of the RTP was considered valid and reliable. Findings will support transition planning for young people with CP.

The processes and outcomes related to 'family-centred care' in neuromotor and functional rehabilitation contexts for children with cerebral palsy: A scoping review.

OBJECTIVE: The aim of this study is to identify the main processes and outcomes related to family-centred care (FCC) in neuromotor and functional rehabilitation of preschool children with cerebral palsy (CP). BACKGROUND: FCC is considered a reference for best practices in child rehabilitation. CP is the most common cause of physical disability in childhood with repercussions on functionality. There is a gap in knowledge of the practical principles of FCC, and it is necessary to develop a reference model for the practice of child rehabilitation professionals. METHODS: In this scoping review, the main databases selected were as follows: LILACS; Pubmed; Embase; The Cochrane Library; CINAHL (EBSCO); Scopus; Web of Science; PEDro (Physiotherapy Evidence Database); Open Gray and other banks of thesis. The terms combined in the search strategy were as follows: 'Family-centered', 'Family-centred' and 'CP'. Inclusion criteria are as follows: studies on preschool-aged children with CP, undergoing family-centred functional therapeutic interventions (FCFTI) with outcomes on bodily structures and functions and/or activities and/or participation. RESULTS: The main participatory care methods identified were home intervention, environmental enrichment, collaborative realistic goal setting, planning of home-based activities and routine, child assessment feedback, family education/training, family coaching, encouraging discussion, observation of therapist and supervised practice. The main relational care qualities identified were as follows: respect, active listening, treat parents as equals, clear language, respect parents' ability to collaborate, demonstrate genuine care for the family, appreciate parents' knowledge and skills, demonstrate competence, experience and commitment. The main outcomes identified in children were improvement in motor and cognitive function and the child's functional ability. The main parentaloutcomes identified were empowerment, feeling of competence, self-confidence, motivation and engagement. CONCLUSION: The main differences in FCFTI programs refer to the parental education/guidance component and the amount of intervention carried out by parents. It is possible that the elements chosen by the therapist in a FCFTI depend on characteristics of the child and caregivers.

How Does Postural Control of Children with CP Deal with Manipulations on Base of Support and Support Surface? A Systematic Review.

AIMS: Systematically review literature addressing the effects of changes in base of support (BoS) configuration and characteristics of support surface (SS) on postural control of children with cerebral palsy (CP). METHODS: We conducted a tailored electronic database search in PubMed/Web of Science/SCOPUS/Embase. RESULTS: We identified 15 studies meeting inclusion criteria. CONCLUSION: The extant literature suggests that when children with CP experience changes in BoS and SS, they engage in fewer adaptive postural control responses than typically developing children. Documented response patterns of children with CP in the literature might guide the selection and development of rehabilitation strategies to appropriately facilitate or challenge postural control in children with CP.

Early Detection and Intervention for Children with High Risk of Cerebral Palsy: A Survey of Physical Therapists and Occupational Therapists in Brazil.

AIMS: The purpose of this study was to assess the current clinical practice of physiotherapists and occupational therapists on early detection and early intervention for children with cerebral palsy (CP) in Brazil. METHODS: This was a cross-sectional study. A purpose-developed electronic survey was disseminated across the country to physiotherapists and occupational therapists working with young children with or at risk of CP. RESULTS: A total of 205 anonymous respondents were included. Most participants (64.4%) agree that the diagnosis of CP can be made before 6 months of age. General Movements Assessment (26.8%) and Hammersmith Infant Neurological Examination (37.1%) were used infrequently. Infants at risk for CP receive therapy twice a week or more by 58.5% of therapists, 93.2% identified parents' goals as the most important factor in customizing the early intervention program. The most frequent intervention strategies for this age group were active stimulation of the child (n = 182), family training (n = 161), strategies to optimize the environment (n = 143), and neurodevelopmental treatment/Bobath (n = 99). CONCLUSIONS: Currently, pediatric physiotherapists and occupational therapists in Brazil do not fully incorporate best practice tools for early identification of children with CP, nor sufficient best evidence-based interventions.