Qualidade de vida em crianças nascidas de muito baixo peso e de extremo baixo peso

Abstract

An increase in the number of more immature newborn survivors has been observed due to neonatology advances. Children born very low birth weight (VLBW) and extremity low birth weight (ELBW) can present as outcomes complications at short and long time, due to intensive care assistance in the neonatal period, what can determine alterations in their quality of life (QoL). This study aims: to evaluate the QoL of children born VLBW and ELBW using a validated questionnaire; to describe domains included in the instrument and to establish a satisfaction profile of the child using self-report and parent proxy-report. 40 children and 45 parents were selected from data at the follow-up service of the HU-UFJF. The QoL was evaluated using the AUQUEI. Other interest data had been collected from follow-up records and direct inquiry to the responsible one for the child. The age of the children varied from 3 to 7 years. The average birth weight was 1173,13g (± 222,84). The gestacional age varied from 24 to 33 weeks (29,40 ± 2,08). The QoL score in the self-report was 49,75 (± 5,973) and in the proxy-report was 49,24 (± 6,675). The correlation between the total scores of children and parents has got intensity of reasonable level (Correlation of Pearson = 0,391 / p = 0,013). However, the QoL final classification (damaged x satisfactory), got poor agreement between them (index of Kappa = 0,143 / p = 0,457). The QoL of children born VLBW and ELBW was considered satisfactory in the self-report and proxy-report. The total scores agreement between them were high, however the classification in satisfactory / damged QoL had poor agreement, what strengthens the importance to evaluate the self-report and to add the proxyreport of the QoL. The domain leisure was considered the most important component of the QoL in childhood by self and proxy-report.