Severe Spastic Quadriplegic Cerebral Palsy Research Articles

Impacto da utilização de recursos tecnológicos no desempenho de atividades cotidianas e na satisfação da mãe de criança com paralisia cerebral grave

O objetivo geral deste estudo foi o de identificar a percepção da mãe de uma criança com paralisia cerebral quadriplégica espástica grave, com três anos de idade, sobre os recursos tecnológicos utilizados por seu filho no desempenho de tarefas funcionais da rotina diária. Os objetivos específicos foram: listar e indicar a frequência de modificações utilizadas pela criança de acordo com o Inventário de Avaliação Pediátrica (PEDI); identificar o nível de satisfação da mãe em relação as modificações, as dificuldades para usá-las e a necessidade de orientações. Para a coleta de dados utilizou-se o PEDI e um roteiro de entrevista semiestruturado. Os resultados sugerem que a mãe sentia-se satisfeita com os recursos tecnológicos utilizados por O objetivo geral deste estudo foi o de identificar a percepção da mãe de uma criança com paralisia cerebral quadriplégica espástica grave, com três anos de idade, sobre os recursos tecnológicos utilizados por seu filho no desempenho de tarefas funcionais da rotina diária. Os objetivos específicos foram: listar e indicar a frequência de modificações utilizadas pela criança de acordo com o Inventário de Avaliação Pediátrica (PEDI); identificar o nível de satisfação da mãe em relação as modificações, as dificuldades para usá-las e a necessidade de orientações. Para a coleta de dados utilizou-se o PEDI e um roteiro de entrevista semiestruturado. Os resultados sugerem que a mãe sentia-se satisfeita com os recursos tecnológicos utilizados por seu filho e estava bem instruída em relação ao modo de usá-los. Dentre os aspectos negativos que influenciavam na usabilidade dos recursos, citam-se à falta de acessibilidade das vias públicas para o uso da cadeira de rodas e a baixa renda da família. Os resultados deste estudo reforçam a necessidade de envolver a família no processo de seleção de recursos tecnológicos que exigem assistência máxima do cuidador, e reportam para a relevância de o profissional analisar criteriosamente o contexto ambiental em que eles serão inseridos a fim de facilitar a usabilidade e promover, de fato, uma melhor qualidade de vida para a pessoa com deficiência e seus familiares. seu filho e estava bem instruída em relação ao modo de usá-los. Dentre os aspectos negativos que influenciavam na usabilidade dos recursos, citam-se à falta de acessibilidade das vias públicas para o uso da cadeira de rodas e a baixa renda da família. Os resultados deste estudo reforçam a necessidade de envolver a família no processo de seleção de recursos tecnológicos que exigem assistência máxima do cuidador, e reportam para a relevância de o profissional analisar criteriosamente o contexto ambiental em que eles serão inseridos a fim de facilitar a usabilidade e promover, de fato, uma melhor qualidade de vida para a pessoa com deficiência e seus familiares.

Autonomic responses to correct outcomes and interaction errors during single-switch scanning among children with severe spastic quadriplegic cerebral palsy

BackgroundThe combination of single-switch access technology and scanning is the most promising means of augmentative and alternative communication for many children with severe physical disabilities. However, the physical impairment of the child and the technology’s limited ability to interpret the child’s intentions often lead to false positives and negatives (corresponding to accidental and missed selections, respectively) occurring at rates that frustrate the user and preclude functional communication. Multiple psychophysiological studies have associated cardiac deceleration and increased phasic electrodermal activity with self-realization of errors among able-bodied individuals. Thus, physiological measurements have potential utility at enhancing single-switch access, provided that such prototypical autonomic responses exist in persons with profound disabilities.MethodsThe present case series investigated the autonomic responses of three pediatric single-switch users with severe spastic quadriplegic cerebral palsy, in the context of a single-switch letter matching activity. Each participant exhibited distinct autonomic responses to activity engagement.ResultsOur analysis confirmed the presence of the autonomic response pattern of cardiac deceleration and increased phasic electrodermal activity following true positives, false positives and false negatives errors, but not subsequent to true negative outcomes.ConclusionsThese findings suggest that there may be merit in complementing single-switch input with autonomic measurements to improve augmentative and alternative communications for pediatric access technology users.

Low doses of pamidronate to treat osteopenia in children with severe cerebral palsy: a pilot study

The aim of this study was to test the efficacy of low doses of pamidronate in increasing bone mineral density (BMD) in non-ambulatory children and adolescents with cerebral palsy (CP). Twenty-three non-ambulatory children and adolescents (12 females, 11 males; mean age 10y [SD 5y], range 4y 1 mo-17 y 11 mo) with severe spastic quadriplegic CP and low BMD were recruited from a multidisciplinary clinic. Severity of CP was graded at Level IV (n=10) and Level V (n=13) using the Gross Motor Function Classification System. Patients received intravenous pamidronate (4.12 mg/kg/y, maximum 45 mg/d) every 4 months. Lumbar spine and femoral neck BMD were measured at baseline and after 4 and 12 months. Twelve months after the first dose of pamidronate there was a significant increase in lumbar spine and femoral neck BMD (p<0.01 for both sites) and z scores compared with baseline values (p<0.01 for both sites). Mean BMD z scores increased 1.6 points for femoral neck and 1.9 points for lumbar spine after 12 months of pamidronate treatment. Serum intact parathyroid hormone increased significantly and cross-linked N-teleopeptide of type I collagen decreased significantly at 12 months. No significant side effect was noted. Low doses of pamidronate are well tolerated and significantly increase BMD in non-ambulatory children and adolescents with CP.

Botulinum Toxin Type A Injections to Salivary Glands: Combination With Single Event Multilevel Chemoneurolysis in 2 Children With Severe Spastic Quadriplegic Cerebral Palsy

Kim H, Lee Y, Weiner D, Kaye R, Cahill AM, Yudkoff M. Botulinum toxin type A injections to salivary glands: combination with single event multilevel chemoneurolysis in 2 children with severe spastic quadriplegic cerebral palsy. We describe 2 children with severe spastic quadriplegic cerebral palsy (CP) who have significant drooling and frequent aspiration pneumonia. They underwent simultaneous botulinum toxin type A (BTX-A) injections to salivary glands for drooling and prevention of aspiration pneumonia along with single-event multilevel chemoneurolysis (SEMLC) with BTX-A and 5% phenol for severe diffuse spasticity. There was significant improvement in drooling, frequency of aspiration pneumonia, and spasticity without adverse effect. BTX-A injections into the salivary glands, in addition to SEMLC, for these 2 children with medically complicated severe spastic quadriplegic CP, were safe and highly successful procedures, which improved their health-related quality of life.

Comparison of the Ratio of Upper to Lower Chest Wall in Children with Spastic Quadriplegic Cerebral Palsy and Normally Developed Children

The upper chest wall does not grow properly in children with spinal muscular atrophy (SMA) with paradoxical breathing. This suggests that long-term inability to take a deep breath in developing children may result in underdevelopment of the upper chest wall. In addition, a rapid and paradoxical breathing pattern is frequently observed in children with severe cerebral palsy (CP), which often corresponds to the underdevelopment of the upper chest wall. The present study is designed to evaluate the ratio of the upper to lower chest wall in children with severe spastic quadriplegic CP, compared with normal children. We compared normal children with children that had spastic quadriplegic CP who did not have kyphosis or scoliosis. Test subjects were matched in terms of age, height, and weight. The diameters of upper chest (Dapex) and of lower chest (Dbase) were measured on the anteroposterior (AP) view of a chest X-ray and the Dapex to Dbase ratio was calculated. In selected cases the forced vital capacity (FVC) was measured using a Wright Respirometer. The Dapex to Dbase ratio was significantly lower in the CP group than in the control group (p<0.001). The ratio increased linearly with age (p<0.001) in both CP (R = 0.372) and control groups (R = 0.477). The FVC/preFVC showed significant correlation with the Dapex to Dbase ratio (R = 0.542, p<0.01). The results of this study suggest a deviation of optimal chest wall structure in children with spastic quadriplegic CP.

Increases in the Communicative Behaviours of Students with Cerebral Palsy as a Result of Feedback to, and the Selection of Goals by, Paraprofessionals

The employment of untrained paraprofessionals to support children with disabilities in educational settings is not uncommon. Although urgently needed, research on effective methods of increasing the skills of these paraprofessionals is scarce. This study, which was conducted over 3 academic years, assessed the effectiveness of incorporating naturalistic prompting strategies by paraprofessionals for increasing target communicative behaviours of students with severe spastic quadriplegic cerebral palsy. A concurrent multiple-baseline design replicated across 3 paraprofessionals was used to determine the effectiveness of verbal and written feedback regarding their attainment of self-selected goals for prompting target communicative behaviours. The results indicate that, after the introduction of the intervention, the prompting behaviours of all paraprofessionals increased, as did the target behaviours of all students. Increases maintained 5 months after intervention for all students observed and for 2 of the 3 paraprofessionals observed. The implications of designing a program to include specific performance feedback and active involvement by staff are discussed.