PT - JOURNAL ARTICLE AU - Magdalena Jaworski AU - Annie Janvier AU - Claude Julie Bourque AU - Thuy-An Mai-Vo AU - Rebecca Pearce AU - Anne R Synnes AU - Thuy Mai Luu TI - Parental perspective on important health outcomes of extremely preterm infants AID - 10.1136/archdischild-2021-322711 DP - 2022 Sep 01 TA - Archives of Disease in Childhood - Fetal and Neonatal Edition PG - 495--500 VI - 107 IP - 5 4099 - http://fn.bmj.com/content/107/5/495.short 4100 - http://fn.bmj.com/content/107/5/495.full SO - Arch Dis Child Fetal Neonatal Ed2022 Sep 01; 107 AB - Background and objective Neonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children.Methods Parents of children aged 18 months to 7 years born <29 weeks’ gestational age presenting at a neonatal follow-up clinic over a 1-year period were asked to evaluate their children’s health and development. They were also asked the following question: ‘if you could improve two things about your child, what would they be?’ Responses were analysed using mixed methods. Logistic regressions were done to compare parental responses.Results 248 parents of 213 children (mean gestational age 26.6±1.6 weeks, 20% with severe NDI) were recruited. Parents evaluated their children’s health at a median of 9/10. Parental priorities for health improvements were (1) development, mainly behaviour, emotional health and language/communication (55%); (2) respiratory heath and overall medical fragility (25%); and (3) feeding/growth issues (14%). Nineteen per cent explicitly mentioned ‘no improvements’. Parents were more likely to state ‘no improvements’ if child had no versus severe NDI OR 4.33 (95% CI 1.47 to 12.75)) or if parents had no versus at least a high school diploma (OR 4.01 (95% 1.99 to 8.10)).Conclusions Parents evaluate the health of their preterm children as being very good, with positive perspectives. Parental concerns outside the developmental sphere should also be addressed both in clinical follow-up and research.The data that support the findings of this study are available from the corresponding author (TML) upon reasonable request.