Résumé :
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Introduction : AVNI program integrates different levels of the Healthcare system, considering home and family as the platform to enable ventilatory assistance of children with nocturnal hypoventilation of diverse etiology. Technology and professional assistance are transferred from hospital to home, contributing to a better health-related quality of life (HRQOL) of patients and their families, Objective : To know the impact of the AVNI program in the health-related quality of life of patients and their families/caretakers Material and methods : HRQOL evaluation of patients and their families with different resources : Autoquestionnaire Enfant Imagé (AUQUEI), Chronic Respiratory Questionnaire-IRS, Impact Family Scale-IFS, Goldberg Health Questionnaire, family Apgar, psicomotor development evaluation at admission and after twelvemonths of program. Statistical analysis using t-student test and a significance level of p<0,05. Results : Eighty two children and their relatives were included. AUQUEI score increase 17,2±5,6 points, IRS 26,4±8,2 points, both statistically significant. IFS, familiar Apgar and Goldberg Health questionnaire also increased in score (p>0,05). Psicomotor development evaluation was assessed in 32 patients verifying improvement in tasks associated to their disease. Discussion : AVNI program improved HRQOL. This evaluation must persist in time for redirecting treatment strategies and knowing long term impact.
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