Information Acquisition and Avoiding Behavior among Parents of Children with Phenylketonuria: A Cross-Sectional Study

Information has a crucial role in the management of Phenylketonuria (PKU). This study aimed to investigate information acquisition and avoidance behavior among parents of children with PKU and determine the associated factors. This cross-sectional survey was conducted on 144 parents of children with PKU at a teaching hospital in Tehran, Iran. Information acquisition behavior and information avoidance were evaluated using the questionnaire. Information-seeking and scanning about PKU were reported by 132 (91.7%) and 45 (31.3%) parents, respectively. The primary sources for seeking information about PKU were physicians (99/132, 75%), informative websites (77/132, 58.3%), scientific websites (21/132, 15.9%), and friends and family (20/132, 15.2%). There was a significant relationship between information-seeking behavior and parents' educational level (P=0.03), which remained significant in multivariable analysis after controlling for confounding variables (95% CI: 0.05-0.90, P=0.03). Also, parents' online information-seeking behavior was associated with their age (P=0.03) and educational degree (P=0.008). Thirty parents (20.9%) avoided PKU information at least occasionally. Physicians and the Internet were the primary sources of information among parents of children with PKU. Although PKU is a non-acute disease, information avoidance was reported by the parents. Considering that avoiding information can lead to misunderstanding and disrupt the treatment process, physicians must pay attention to this issue.