OBJECTIVETo investigate the factors influencing the quality of life (QOL) of children with phenylketonuria (PKU) in Anhui Province, China.

METHODSA total of 104 PKU children who were diagnosed and treated in three major maternal and child health hospitals in Anhui Province were enrolled as study subjects. The PedsQL™ 4.0 Generic Core Scales were used to evaluate the quality of life of these children. The multivariate logistic regression analysis was used to evaluate the factors influencing the QOL.

RESULTSThe 104 PKU children had significantly lower overall QOL score and scores on the subscales of physiological functioning, emotional functioning, and social functioning than the general school-age children (P<0.01). They also had a significantly lower score on the physiological domain consisting of emotional functioning, social functioning, and role functioning than the general school-age children (P<0.01). The multivariate logistic regression analysis showed that an older age (≥4 years) of PKU children was the risk factor for poor QOL (OR=8.569, P<0.01), and guardians' engagement at enterprises or institutions was the protective factor for QOL (OR=0.206, P<0.05).

CONCLUSIONSPKU children have a low level of QOL, and age and guardians' occupation are factors influencing the QOL.