Résumé :
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INTRODUCTION:It has been estimated that more than one person in every 3000 has a serious disabling inherited neuromuscular disorder. There are several scales to measure the stages of motor decline in NMD. Motor Function Measure (MFM) applicable to different degrees of severity in the neuromuscular deterioration. The Functional Independence Measure (FIM) is an instrument used to assess the results and progress of a medical rehabilitation program. The chronic illness of a child has a great impact on the life of the family. The Zarit scales permit to assess the burden on family carers of persons with chronic disease. MATERIAL AND METHODSWe designed a retrospective cohort to assess the burden on mothers carers of persons with neuromuscular disorders. We enrolled 24 consecutive children of neuropediathric section of Hospital Aeronautico Central, Hospital Rivadavia, Hospital Ruffa, between August 2008 and January 2011. The inclusion criteria was a diagnosis of NMD, by clinical, Neurophysiologic Studies, with or without Muscle Neural Biopsy and genetic analysis. The patients were examined with Motor Function Measure and the mothers were evaluated through two scales: Impact of evement (IE), and Zarit Scales (ZS) at the moment of diagnosis, and at least 11month of follow up after diagnosis. We evaluate the correlation between Functional Independence Measure (FIM) and psychosocial impact (IE and ZS) at diagnosis and at follow up with rho spearman. RESULTS24 children with their mothers were included. At diagnosis: The median age of the child was 5 years old (intercuartile range (IR) 3-10), 55% (23) had some degree of mental deficit, 24% (6) were completely dependent. The median age of the mother was 30 years old (IR 25-36), 50% (12) had only primary school, the median of ZS was 36 (IR 27-54) and of IE was 39 (IR 27-54). At follow up: the median age of the mother was 37 years old (IR 34-50), the median of ZS 40 (IR 28-50) and of IE was 27 (IR 21-32). The median of MFM was 70 (52-87). We did not find a statistical significance in the correlation between FIM at follow up and ZS (rho spearman=-0.19, p=0.38) and between FIM and IE (rho= 0.36, p=0.09). There was negative correlation between maternal age and ZS at diagnosis (rho -0.52), and it was statistical significant p<0.01. Although there was a negative correlation tendency between MFM (total score and each items) and ZS, it was not statistical significant.CONCLUSIONS:Provide prospective tools to evaluate and outcome in patient with NMD, in focus at the diagnostic time and after diagnosis, in order to know the psychosocial implications of patients and their caregivers is substantially important. In the study sample, been older is a protective characteristic for care burden. Older carers express a lesser burden on the ZS and IE than do younger individuals. Despite in other studies different results were presented, there was no statistical correlation found between FIM, ZS and IE in this study. Further prospective studies are needed.
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