The initial Brazilian version of the CHQ-PF50 showed, in general, adequate psychometric properties for application in patients with CP. Although floor and ceiling effects are expected in heterogeneous group as a limitation inherent to generic assessment instruments, they must be carefully considered in further studies. The general health perception and role/social limitations-emotional behavioral scale must be further reviewed for this population.
A esclerose múltipla (EM) é doença crônica, de caráter inflamatório e degenerativo 1 , que acomete preferencialmente adultos jovens 1,2 . A saúde e o bem estar desses indivíduos podem sofrer forte impacto pela doença e/ou efeitos colaterais de medicamentos, com interferência significativa na qualidade de vida (QV) de seus portadores. O conceito de QV refere-se a indicadores objetivos e subjetivos de felicidade e de satisfação 3 . Segundo a Organização Mundial de Saúde, a QV é definida como "a percepção do indivíduo de sua posição na vida, no contexto cultural e no sistema de valores em que ele vive e em relação a seus objetivos, expectativas, preocupações e desejos" 4 . Na área biomédica, a QV relacionada à saúde (QVRS) refere-se à satisfação e bem-estar do indiví-duo nos domínios físico, psicológico, social, econômi-co e espiritual em relação ao estado de saúde, uma combinação do estado de saúde com a resposta afetiva a esta condição 5 . PAlAVRAS-ChAVE: esclerose múltipla, qualidade de vida, avaliação em saúde. Health-related quality of life in multiple sclerosisABSTRACT -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 Uberlân-dia, 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.KEy wORDS: multiple sclerosis, quality of life, health evaluation.
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
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 (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.
BackgroundQuality 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. TheAutoquestionnaireQualité de Vie Enfant Imagé (AUQEI) is a QL assessment designed for children to self-report—it uses images to facilitate the reporting process.Objectiveevaluate the psychometric properties of AUQEI when responses are given by children with CP.FindingsChildren 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).ConclusionThe 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.
rEsUmoIntrodução: 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. descritores: treinamento de resistência; depressão; cuidadores. 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
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