Investigação da qualidade de vida dos cuidadores de crianças com paralisia cerebral

Introdução: Alterações motoras frequentemente estão presentes e se relacionam com o desempenho funcional limitado nas atividades de vida diárias de crianças com Paralisia Cerebral (PC), exigindo a necessidade de ajuda total e/ou parcial de cuidadores, os quais tendem a assumir múltiplas responsabilidades, ocasionando cansaço, isolamento, sobrecarga e estresse. Objetivo: Identificar a qualidade de vida de cuidadores primários de crianças com PC nos centros de reabilitação neurofuncional da Grande Florianópolis/SC. Métodos: Estudo transversal, com cuidadores primários de crianças com PC que frequentam pelo menos um dos centros de reabilitação neurofuncional utilizando os seguintes instrumentos: Short Form Health (SF-36), Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS) e a Parte I do Pediatric Evaluation of Disability Inventory (PEDI). Realizou-se análise descritiva, teste Shapiro Wilk e teste de Spearman com nível de significância quando p < 0,005. Resultados: Foram incluídos 32 cuidadores primários de crianças com PC. Observou-se predominância de crianças com PC do tipo quadriparesia espástica, com grave e moderado grau de funcionalidade, segundo o GMFCS (87%) e o MACS (54,4%), respectivamente. Nas atividades de vida diárias, um maior grau de comprometimento funcional foi proporcional a maior dependência e, portanto, maior necessidade de auxílio, especialmente relacionado ao autocuidado. Em relação a qualidade de vida, observou-se comprometimento na saúde física e consequentemente a diminuição na inserção social dos cuidadores. Conclusão: O nível de funcionalidade de crianças com PC foi proporcional a sua independência de seu desempenho nas atividades diárias, especialmente relacionado aos aspectos de autocuidado, porém a necessidade de auxílio para locomoção e/ou tarefas manuais não interferiram significativamente na qualidade de vida dos cuidadores.

Investigation of Difference Between the Three Representatives of the Functional Status According to Executive Functions and Participation in Children With Hemiplegic Cerebral Palsy

Aim: This study aimed to explore whether the three functional status representatives differentiate according to actual performance in everyday life. Method: High to moderate functional motor and communication performance levels as described by Manual Ability Classification System (MACS), Gross Motor Function Classification System, and Communication Function Classification System (CFCS) were investigated in the context of the scaled scores of executive function tasks and participation in different life situations on ABILHAND-Kids and Child and Adolescent Scale of Participation (CASP) questionnaires. The data were collected from 98 children with hemiplegic cerebral palsy (CP) mainstreamed in regular schools (mean age 9,3 years [SD 3.0 years], [%95 CI:8.7-9.9]; 42 females, 56 males); 28,6% classified to level I, 29,6 % to level II, and 41,8 % to level III in MACS. Results: The study findings demonstrated that scaled scores of the executive function tasks and participation in different life situations increased with the greater MACS, GMFCS, and CFCS levels (p<0,5).Conclusion: Data from both MACS, GMFCS and CFCS might be useful to predict a child’s actual performance in daily life.

A prospective study on transfer of pronator teres to extensor carpi radialis brevis for forearm and wrist deformity in children with cerebral palsy

We prospectively evaluated the clinical and functional outcomes of pronator teres to extensor carpi radialis brevis transfer in children with cerebral palsy. Patients were followed-up at 6 months postoperatively, and functionally assessed using the House classification, Manual Ability Classification System (MACS) and Upper Extremity Functional Index (UEFI). Fifteen children with a mean age of 8.1 years underwent tendon transfers. All patients were of Gschwind and Tonkin Grade 2 for pronation deformity; eight patients were of Zancolli’s classification Group 1 and seven, Group 2 for wrist flexion deformity. The average gain in active supination was 67°, and wrist extension 15°. An increase of 7.0 in the UEFI score was recorded, although no significant improvement in MACS and House classification was observed. We conclude that the pronator teres to extensor carpi radialis brevis transfer improves upper limb function through effective correction of forearm pronation and wrist flexion deformities. Level of evidence: II

A hybrid model of modified constraint induced movement therapy to improve upper extremity performance in children with unilateral upper extremity paresis: Retrospective case series

Introduction The study aims were to assess impact of an intensive camp-based intervention using a hybrid model of modified constraint induced movement therapy with bimanual therapy in children with upper extremity impairment, and to see if improvements persisted over time. Method Twenty subjects participated. Eight subjects attended camp 2 years in a row, and 12 subjects attended camp only 1 year. The Assisting Hand Assessment and Children’s Hand-use Experience Questionnaire were administered before and after camp. Assisting Hand Assessment and Children’s Hand-use Experience Questionnaire scores were compared between assessments using linear mixed effects models, adjusting for covariates (age and Manual Ability Classification System level) and the repeated measures within subjects. Results Assisting Hand Assessment score improved during the intervention phase for subjects at all Manual Ability Classification System levels ( p ≤ 0.0001). Improvement was maintained long-term at 1 year post. Children’s Hand-use Experience Questionnaire scores for grasp efficacy and time taken were significantly improved during intervention but not maintained at 1 year post. The feeling bothered dimension showed no significant change over time. Conclusion A hybrid model of modified constraint induced movement therapy and bimanual therapy was effective in improving bimanual function for children with varying levels of neurologic hemiparesis, with changes maintained long-term.

Gender Differences in Treatments and Interventions Received for Children and Adolescents with Cerebral Palsy

Background In the Swedish population-based follow-up program and national quality registry for individuals with cerebral palsy (CPUP), physiotherapy (PT) and occupational therapy (OT) treatments are regularly recorded along with functional status. By Swedish law, all citizens irrespective of personal characteristics or socioeconomic status have the right to receive medical treatments as applicable. Previous studies have shown gender differences in terms of certain treatments and interventions received among children with CP. The purpose of this study was to examine differences in PT and OT treatments and interventions by gender and place of birth in children and adolescents participating in CPUP. Methods This was a cross-sectional study. Data from the latest PT form (n = 2695) and OT form (n = 3480) measures were extracted for individuals aged 0-17 years in CPUP. Logistic regressions were used to assess the relationships between the outcome variables and gender and place of birth (including an interaction term gender x place of birth), adjusted for age, Gross Motor Function Classification System (GMFCS) levels and spasticity scores for PT interventions, and Manual Ability Classification System (MACS) for OT interventions. Results are presented as odds ratios [95% confidence intervals] and p-values. Girls were more likely to have spinal braces than boys; 1.544 [1.073, 2.223] p<0.05, a significant interaction with place of birth indicated less spinal braces prescribed to children born outside Scandinavia; 0.204 [0.0792, 0.525] p<0.001. Boys were more likely to have undergone selective dorsal rhizotomy (SDR); 0.485 [0.251, 0.939] p<0.05. Individuals born outside Scandinavia, were less likely to have received intrathecal baclofen (ITB) 0.269 [0.0737, 0.980] p<0.05. Conclusions Of the treatments prescribed, gender differences were observed for spinal braces and having undergone SDR. A statistically significant difference based on place of birth was seen for spinal brace and having received ITB treatment. Other PT and OT treatments were associated with age, levels of spasticity, and functional severity classified with the Gross Motor Function Classification System and the Manual Ability Classification System. Increased awareness of differences based on gender and where a child is born, could be obtained by inter- and intraprofessional discussions.

PREDIKTORI SOCIJALNE PARTICIPACIJE KOD DECE SA CEREBRALNOM PARALIZOM U OSNOVNIM ŠKOLAMA U REPUBLICI SRBIJI

Pojam socijalna participacija predstavlja kvalitet interakcije između individue i njenog okruženja. Danas se uspešno participovanom osobom smatra pojedinac koji je aktivno uključen u život zajednice a ne osoba koja samo može ili želi da se uključi u aktivnosti sredine u kojoj živi. Cerebralna paraliza (CP) podrazumeva pre svega poremećaj razvoja pokreta i posture sa čestim dodatnim simptomima kao što su senzorna, intelektualna, govorna, druga neurološka oštećenja, psihološke i emocionalne smetnje. S obzirom na činjenicu da je ustanovljeno da je kvalitet participacije učenika sa CP u školskom okruženju veoma važan indikator njihove uspešne društvene participacije u budućnosti, smatramo da je dublje razumevanje faktora koji utiču na njihovu društvenu uključenost tokom osnovnoškolskog obrazovanja od velikog značaja za unapređenje kvaliteta njihovog života. Glavni cilj ovog rada je da identifikuje faktore koji unapred mogu da determinišu kvalitet socijalne participacije učenika sa CP u osnovnim školama u Srbiji. Studija obuhvata 75 dece sa CP između 6 i 12 godina koja pohađaju osnovne škole od prvog do šestog razreda u četiri oblasti Republike Srbije. Glavni upitnik korišćen u ovom istraživanju je prvi i treći deo upitnika The School function assessment (prev. Procena školskog funkcionisanja). Takođe su uzete u obzir i vrednosti grubih motoričkih funkcija (izmerene pomoću GMFCS - Gross motor function classification system (prev. Sistem klasifikacije grubih motoričkih funkcija) i manipulativne spretnosti (izmerene MACS skalom – Manual ability classification system (prev. Sistem klasifikacije manuelnih sposobnosti)) za svakog pojedinačnog učenika. Rezultati pokazuju detaljan uvid u nivo socijalne participacije učenika sa CP u osnovnim školama u Srbiji i objašnjavaju potencijalne faktore koji mogu da utiču na njihovu socijalnu participaciju: nivo grubih motornih funkcija, manipulativna spretnost, kognitivni status i uzrast učenika.