EFEITO DO EXERCÍCIO FÍSICO SOBRE A SAÚDE E SOBRECARGA DE MÃES DE CRIANÇAS E ADOLESCENTES COM PARALISIA CEREBRAL / EFFECT OF EXERCISE ON HEALTH AND BURDEN OF MOTHERS OF CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY / EFECTO DEL EJERCICIO SOBRE LA SALUD Y SOBRECARGA DE LAS MADRES DE NIÑOS Y ADOLESCENTES CON PARÁLISIS CEREBRAL

RESUMO Introdução: A paralisia cerebral (PC) é considerada a incapacidade física mais comum na infância. Essa doença afeta profundamente a saúde e o bem-estar dos indivíduos acometidos e também pode influenciar múltiplos aspectos da vida de seus cuidadores, especialmente as mães. Objetivo: Avaliar o efeito de um programa de exercício resistido sobre a qualidade de vida relacionada à saúde (QVRS) de mães de crianças e adolescentes com PC. Método: Vinte e duas mães sedentárias cuidadoras de crianças e adolescentes com PC, aptas à prática de exercício resistido, participaram de um programa de exercício resistido de intensidade moderada, em 2 sessões semanais durante 12 semanas. Todos os participantes responderam ao questionário de QVRS, Short Form Questionnaire (SF-36), à escala de sobrecarga Caregiver Burden Scale (CBS) e ao Inventário de Depressão de Beck (BDI) antes e após o programa de intervenção. Os escores dos questionários pré e pós-intervenção foram comparados pelo teste de Wilcoxon e a magnitude das diferenças foi medida pelo tamanho do efeito. Resultados: A mediana de idade das mães foi de 41 anos e variou de 18 a 58 anos. A mediana da idade das crianças/adolescentes foi de 14 anos, variando 3 a 21 anos. Após a intervenção foram encontrados aumentos significativos nos escores do SF-36 (p < 0,05), exceto nos domínios aspectos físicos e aspectos emocionais, que já obtiveram pontuação máxima pré-intervenção. Os escores do CBS e do BDI tiveram redução significativa pós-intervenção (p < 0,05). Conclusão: A prática regular de exercícios resistidos tem impacto positivo sobre a QVRS, a percepção de sobrecarga e a intensidade de sintomas depressivos de mães cuidadoras de crianças e adolescentes com PC.

ABSTRACT Introduction: Cerebral palsy (CP) is considered the most common physical disability in childhood. This disease profoundly affects the health and well-being of affected individuals and can influence multiple aspects of the life of their caregivers, especially mothers. Objective: To evaluate the effect of a resistance training program on health-related quality of life (HRQoL) of mothers of children and adolescents with CP. Methods: Twenty-four sedentary mothers caregivers of children and adolescents with CP, able to practice resistance training, participated in a resistance training program of moderate intensity of 2 sessions per week for 12 weeks. All participants answered to HRQoL questionnaire, SF-36, Caregiver Burden Scale (CBS) and Beck Depression Inventory (BDI) before and after the intervention program. The scores of the questionnaires before and after the intervention were compared using the Wilcoxon test and the magnitude of the differences was measured by effect size. Results: The median age of the mothers was 41 years, ranging from 18 to 58 years. The median age of children and adolescents was 14 years, ranging from 3 to 21 years. The SF-36 scores were significantly higher after the intervention (p<0.05), except in the domains physical aspects and emotional aspects, which already scored the highest value before the intervention. CBS and BDI scores were significantly reduced after intervention (p<0.05). Conclusion: The regular practice of resistance training has a positive impact on HRQoL, burden perception and intensity of depressive symptoms of mothers caregivers of children and adolescents with CP.

RESUMEN Introducción: La parálisis cerebral (PC) es considerada la discapacidad física más común en la infancia. Esta enfermedad afecta profundamente la salud y el bienestar de los individuos afectados y también puede influir en muchos aspectos de la vida de sus cuidadores, especialmente las madres. Objetivo: Evaluar el efecto de un programa de ejercicios de resistencia en la calidad de vida relacionada con la salud (CVRS) de las madres de niños y adolescentes con parálisis cerebral. Método: Veinte y dos madres sedentarias cuidadoras de niños y adolescentes con PC, aptas para la práctica de ejercicios de resistencia, participaron en un programa de ejercicios de resistencia de intensidad moderada, de 2 sesiones por semana durante 12 semanas. Todos los participantes respondieron el cuestionario CVRS, el Short Form Questionnaire (SF-36), la escala de sobrecarga del cuidador Caregiver Burden Scale (CBS) y el Inventario de Depresión de Beck (BDI) antes y después de la intervención. Las puntuaciones de los cuestionarios antes y después de la intervención se compararon mediante la prueba de Wilcoxon y la magnitud de las diferencias fue medida por el tamaño del efecto. Resultados: La edad mediana de las madres fue de 41 años, con un rango de 18 a 58 años. La mediana de edad de los niños/adolescentes fue de 14 años, con rango 3 a 21 años. Después de la intervención se encontró un aumento significativo en los resultados de SF-36 (p < 0,05), excepto en los dominios aspectos físicos y aspectos emocionales, que han obtenido la máxima puntuación antes de la intervención. Las puntuaciones de la CBS y la BDI tuvieron una reducción significativa después de la intervención (p < 0,05). Conclusión: La práctica regular de ejercicios de resistencia tiene un impacto positivo en la CVRS, la percepción de la sobrecarga y la intensidad de los síntomas depresivos de las madres cuidadoras de niños y adolescentes con PC.

Psychometric properties of the Autoquestionnaire Qualité de Vie Enfant Imagé (AUQEI) applied to children with cerebral palsy.

BACKGROUND: Quality of life (QL) assessments of children with incapacitating diseases, such as cerebral palsy (CP), have often been conducted with the help of the representatives of a child, making QL assessment more subjective. The Autoquestionnaire Qualité de Vie Enfant Imagé (AUQEI) is a QL assessment designed for children to self-report-it uses images to facilitate the reporting process. OBJECTIVE: evaluate the psychometric properties of AUQEI when responses are given by children with CP. FINDINGS: Children aged 4 to 12 years (45 with CP and 45 healthy children) gave responses to the questionnaire. The data quality, reliability and validity were assessed. The data loss rate ranged from 8.8% to 46.7%, and was highest for the "autonomy" factor. No floor or ceiling effect was detected. The success rate for reliability of the internal consistency of the items was less than 80% for the "autonomy" factor. Cronbach's alpha coefficient was 0.71 for the instrument and less than 0.5 for the factors. All the factors had a success rate of greater than 80% for the discriminating validity of the items. The factors did not have correlations between each other, thus indicating adequate discriminating validity. Convergent validity was tested and a significant correlation was demonstrated only between the AUQEI "functioning" factor and the Child Health Questionnaire--50-Item (CHQ-PF50) physical summary score (r = 0.31, p = 0.042). The AUQEI scores did not have correlations with the gross motor function scores (p>0.05) as expected for divergent validity. Regarding construct validity, the total AUQEI score obtained by the CP group was lower (median: 47.3) than that of the healthy group (median: 51.0) (p<0.01). CONCLUSION: The AUQEI was shown to be a reliable and valid instrument for assessing children with CP when the total score was used. Convergent validity should continue to be tested in future studies.

Multiple sclerosis starting before the age of 18 years: the Brazilian experience.

Multiple sclerosis (MS) starting in childhood and adolescence poses a challenge for diagnosis and management of the disease. The aim of the present study was to assess the characteristics of early onset MS in Brazilian patients. Methods Retrospective data collection from specialized MS units. Results From 20 MS units in 11 Brazilian states, 117 cases of MS starting before the age of 18 years were collected. These patients had an average of 10 years of disease duration, still typically with low disability and one relapse every 2.5 years. The mean age for disease onset was 13.7 years. Conclusion The present study introduces a large series of Brazilian cases of pediatric MS. Although some patients presented a very severe form of MS, on the whole the group of patients with MS starting in childhood or adolescence presented a relatively mild form of this disease in Brazil.

Multiple sclerosis in South America: month of birth in different latitudes does not seem to interfere with the prevalence or progression of the disease.

OBJECTIVE: To assess whether the month of birth in different latitudes of South America might influence the presence or severity of multiple sclerosis (MS) later in life. METHODS: Neurologists in four South American countries working at MS units collected data on their patients' month of birth, gender, age, and disease progression. RESULTS: Analysis of data from 1207 MS patients and 1207 control subjects did not show any significant variation in the month of birth regarding the prevalence of MS in four latitude bands (0-10; 11-20; 21-30; and 31-40 degrees). There was no relationship between the month of birth and the severity of disease in each latitude band. CONCLUSION: The results from this study show that MS patients born to mothers who were pregnant at different Southern latitudes do not follow the seasonal pattern observed at high Northern latitudes.

Multiple sclerosis starting before the age of 18 years: the Brazilian experience / Esclerose multipla com inicio antes dos 18 anos de idade: a experiencia brasileira

Multiple sclerosis (MS) starting in childhood and adolescence poses a challenge for diagnosis and management of the disease. The aim of the present study was to assess the characteristics of early onset MS in Brazilian patients. Methods Retrospective data collection from specialized MS units. Results From 20 MS units in 11 Brazilian states, 117 cases of MS starting before the age of 18 years were collected. These patients had an average of 10 years of disease duration, still typically with low disability and one relapse every 2.5 years. The mean age for disease onset was 13.7 years. Conclusion The present study introduces a large series of Brazilian cases of pediatric MS. Although some patients presented a very severe form of MS, on the whole the group of patients with MS starting in childhood or adolescence presented a relatively mild form of this disease in Brazil. .

Esclerose múltipla (EM) com início na infância e adolescência constitui um desafio para o diagnóstico e manejo da doença. A proposta do presente estudo foi avaliar as características da EM de início precoce em pacientes brasileiros. Métodos Coleta de dados retrospectiva de arquivos de unidades especializadas em atendimento da EM. Resultados A partir de 20 unidades de EM de nove estados brasileiros, foram coletados 117 casos de EM com início antes dos 18 anos de idade. Estes pacientes tinham uma média de 10 anos de duração da doença, de maneira geral apresentavam pouca incapacidade , com um surto a cada dois anos e meio. A média de idade no início da doença era 13,7 anos. Conclusão O presente estudo apresenta uma grande série de casos brasileiros de EM pediátrica. Embora alguns pacientes tenham apresentado forma grave de EM, de maneira geral o grupo de pacientes cuja EM iniciou-se na infância ou adolescência apresentou uma forma relativamente leve da doença no Brasil. .

Multiple sclerosis in South America: month of birth in different latitudes does not seem to interfere with the prevalence or progression of the disease / Esclerose multipla na America do Sul: mes de nascimento em diferentes latitudes nao parece interferir com a prevalencia ou progressao da doenca

Objective To assess whether the month of birth in different latitudes of South America might influence the presence or severity of multiple sclerosis (MS) later in life. Methods Neurologists in four South American countries working at MS units collected data on their patients' month of birth, gender, age, and disease progression. Results Analysis of data from 1207 MS patients and 1207 control subjects did not show any significant variation in the month of birth regarding the prevalence of MS in four latitude bands (0–10; 11–20; 21–30; and 31–40 degrees). There was no relationship between the month of birth and the severity of disease in each latitude band. Conclusion The results from this study show that MS patients born to mothers who were pregnant at different Southern latitudes do not follow the seasonal pattern observed at high Northern latitudes. .

Objetivo Avaliar se o mês de nascimento em diferentes latitudes da América do Sul pode influenciar a presença ou gravidade da esclerose múltipla (EM) na vida. Método Neurologistas de quatro países da América do Sul trabalhando em unidades de EM coletaram os dados de seus pacientes com referência ao mês de nascimento, gênero, idade e progressão da doença. Resultados A análise dos dados mostrou que, para 1207 pacientes com EM e 1207 controles, não havia diferença significativa no mês de nascimento com relação à prevalência de EM em quatro zonas de latitude (0–10; 11–20; 21–30; e 31–40 graus). Não houve relação entre o mês de nascimento e a gravidade da doença em nenhuma destas zonas. Conclusão Os resultados deste estudo mostram que pacientes com EM nascidos de mães grávidas em diferentes latitudes sul não seguem o padrão dos resultados sazonais encontrados nas latitudes norte. .

Evaluation of the health-related quality of life in elderly patients according to the type of hip fracture: femoral neck or trochanteric.

OBJECTIVE: To evaluate the effect the type of hip fracture (femoral neck or trochanteric) has on the Health-Related Quality of Life of elderly subjects. METHODS: Forty-five patients with hip fractures (mean 74.30 +/- 7.12 years), 24 with a femoral neck fracture and 21 with a trochanteric fracture, completed the 36-item Short Form Health Survey (SF-36) at baseline and four months after fracture. The Health-Related Quality of Life scores were compared according to fracture type, undisplaced and displaced femoral neck fractures, and stable and unstable trochanteric fractures. RESULTS: Compared to baseline, all patients scored lower in the physical functioning, role limitation-physical, bodily pain and vitality categories four months after the fracture had occurred. The SF-36 scores for all the scales did not differ significantly between patients with femoral neck versus trochanteric fractures, or between patients with displaced versus undisplaced femoral neck fractures and stable versus unstable trochanteric fractures. CONCLUSIONS: The mental and physical quality of life of elderly patients with a hip fracture is severely impaired one month after fracture, with partial recovery by the end of the fourth month. The negative impact on the Health-Related Quality of Life did not differ significantly according to fracture type.

Evaluation of the health-related quality of life in elderly patients according to the type of hip fracture: femoral neck or trochanteric

OBJECTIVE: To evaluate the effect the type of hip fracture (femoral neck or trochanteric) has on the Health-Related Quality of Life of elderly subjects. METHODS: Forty-five patients with hip fractures (mean 74.30 ± 7.12 years), 24 with a femoral neck fracture and 21 with a trochanteric fracture, completed the 36-item Short Form Health Survey (SF-36) at baseline and four months after fracture. The Health-Related Quality of Life scores were compared according to fracture type, undisplaced and displaced femoral neck fractures, and stable and unstable trochanteric fractures. RESULTS: Compared to baseline, all patients scored lower in the physical functioning, role limitation-physical, bodily pain and vitality categories four months after the fracture had occurred. The SF-36 scores for all the scales did not differ significantly between patients with femoral neck versus trochanteric fractures, or between patients with displaced versus undisplaced femoral neck fractures and stable versus unstable trochanteric fractures. CONCLUSIONS: The mental and physical quality of life of elderly patients with a hip fracture is severely impaired one month after fracture, with partial recovery by the end of the fourth month. The negative impact on the Health-Related Quality of Life did not differ significantly according to fracture type.

[Health-related quality of life in multiple sclerosis]. / Qualidade de vida em portadores de esclerose múltipla.

Multiple sclerosis (MS) is a chronic disease which may exert significant effects on the life of patients. Traditional outcome measures in MS lack in consider the effects of the disease on health-related quality of life (HRQoL). The goal of this study is to measure HRQoL in MS patients in the city of Uberlândia, State of Minas Gerais, Brazil. The Brazilian version of the SF-36 was applied in 23 MS patients and in 69 subjects of general population (blood donors) in Uberlândia. MS patients scored lower in all SF-36 scales than do the general population, principally in physical function domains. Patients with EDSS scores < or =3.5 had higher mean scores in four domains than do the patients with EDSS scores > or =4.0, and lower in all domains than control group. Depressive symptoms and heat intolerance showed correlation with SF-36 domains and components. In conclusion, MS patients have a significant negative impact on all HRQoL domains measured by SF-36, compared with general population, even in the stages with lower disability.

Qualidade de vida em portadores de esclerose múltipla / Health-related quality of life in multiple sclerosis

A esclerose múltipla (EM) é doença crônica que pode causar repercussões importantes na vida dos pacientes. Medidas tradicionais de evolução na EM não consideram os efeitos da doença na qualidade de vida relacionada à saúde (QVRS). O objetivo deste estudo é avaliar o impacto da EM na QVRS de portadores residentes em Uberlândia - MG. O SF-36 foi aplicado em 23 portadores de EM e em 69 doadores de sangue. Os portadores de EM apresentaram escores mais baixos que a população geral, principalmente nos domínios de função física. Pacientes com EDSS <3,5 apresentam escores maiores em quatro domínios do SF-36 que aqueles com EDSS >4,0, e menores em todos os domínios em relação ao grupo controle. Sintomas depressivos e intolerância ao calor mostram correlação com domínios e componentes do SF-36. Concluindo, a EM provoca impacto negativo significante em todos os domínios do SF-36, comparados à população geral, mesmo nas fases de menor incapacidade.

Multiple sclerosis (MS) is a chronic disease which may exert significant effects on the life of patients. Traditional outcome measures in MS lack in consider the effects of the disease on health-related quality of life (HRQoL). The goal of this study is to measure HRQoL in MS patients in the city of Uberlândia, State of Minas Gerais, Brazil. The Brazilian version of the SF-36 was applied in 23 MS patients and in 69 subjects of general population (blood donors) in Uberlândia. MS patients scored lower in all SF-36 scales than do the general population, principally in physical function domains. Patients with EDSS scores <3.5 had higher mean scores in four domains than do the patients with EDSS scores >4.0, and lower in all domains than control group. Depressive symptoms and heat intolerance showed correlation with SF-36 domains and components. In conclusion, MS patients have a significant negative impact on all HRQoL domains measured by SF-36, compared with general population, even in the stages with lower disability.