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@#Introduction Thalassemia disease is a serious health problem as it gives psychosocial burden not only to the patients but also to the patients’ ecosystem. Among the difficulties faced by patients are psychosocial problems, especially in the process patients’ growth and development. Therefore, this study examines what factors can influenced the psychosocial of Thalassemic patients.. Methods A cross-sectional study was carried out among 161 of Thalasemia Major children at Women and Children Hospital, Likas and Keningau District Hospital, Sabah from February to April 2013. The validated PedsQL 4.0 Generic Core Scale and Social Support questionnaire has been used. Results The results showed that the overall psychosocial score was 68.50 (SP 15.18) with the lowest average school psychosocial score of 58.38 (SP 17.82). Only gender factor showed a significant relationship with psychosocial score of emotional function. There is no significant relationship noted between other sociodemographic factors with overall psychosocial scores or with the psychosocial scores of each function. In relation to subscale social support factors, there was a significant relationship between the psychosocial scores of each function and overall with social support factors of parents, close friends, classmates and teachers. The results of linear regression multivariate analysis suggest that social support factors from classmates is a significant factor in the psychosocial impact of Thalassemia Major pediatric patients. Conclusions In conclusion, social support factors primarily from peers are very important in influencing the psychosocial of Thalassemia Major children in overcoming their life's functionality like other normal children
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La calidad de vida relacionada con la salud (CVRS) en los niños con osteogénesis imperfecta (OI) ha sido poco comunicada. Se la evaluó con el cuestionario Peds QL versión 4.0, en 65 familias y 42 niños, con una media de edad de 7,76 años (35 con OI de tipo I y 30 con OI de tipo III-IV). Hubo diferencias signifcativas en el dominio físico según los niños y los padres, entre los niños con OI de tipo I y aquellos con OI de tipo III-IV. En el dominio social solo los padres consideraron menor CVRS en las formas III-IV. En el análisis multivariado de las formas graves, para los padres la mejor CVRS se asoció con menor défcit de estatura (coef. β = 3,8; p= 0,039), menor número de fracturas (coef. β= 0,69; p= 0,003) y mayor dosis de pamidronato (coef. β= 1,44; p= 0,037). Para los niños, la CVRS fue mejor cuando hubo adherencia al tratamiento (coef. β= 19,41; p= 0,03).
The impact produced by osteogenesis imperfecta in childrens' quality of life almost has not been reported; 65 children, 38 males, were evaluated according to the questionnaire PedsQL 4.0 Argentinean Spanish version. Median age was 7.76 years; 35 children with OI type I were compared with 30 type III-IV (according to Sillence Classifcation) fnding signifcant difference in the physical domain in both visions, children and parents, and only in parents' vision in the social area. Multivariate analysis showed an association between better PedQL scores and treatment compliance (coef. β= 19.41 p= 0.03) in children's vision. In parental report on the other hand, the association was found with greater pamidronate doses (coef. β 1.44 p=0.037), lower height compromise (coef. β= 3.8; p= 0.039) and less number of fractures (coef. β= 0.69; p= 0.003).