Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study
Seppänen AV., Sauvegrain P., Draper ES., Toome L., Rafei RE., Petrou S., Barros H., Zimmermann LJI., Cuttini M., Zeitlin J., Lebeer J., Van Reempts P., Bruneel E., Cloet E., Oostra A., Ortibus E., Sarrechia I., Boerch K., Pedersen P., Varendi H., Männamaa M., Ancel PY., Burguet A., Jarreau PH., Pierrat V., Nuytten A., Maier RF., Zemlin M., Misselwitz B., Wohlers L., Cuttini M., Croci I., Carnielli V., Ancora G., Faldella G., Ferrari F., van Heijst A., Koopman-Esseboom C., Gadzinowski J., Mazela J., Montgomery A., Pikuła T., Barros H., Costa R., Rodrigues C., Aden U., Draper ES., Fenton A., Johnson SJ., Mader S., Thiele N., Pfeil JM., Petrou S., Zeitlin J., Aubert A., Bonnet C., Seppänen AV.
© 2020, International Pediatric Research Foundation, Inc. Background: Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study. Methods: Data come from a 5-year follow-up of an area-based cohort of births <32 weeks’ gestation in 19 regions from 11 European countries. Perinatal data were collected from medical records and 5-year data from parent-report questionnaires. Parents rated post-discharge care related to their children’s preterm birth (poor/fair/good/excellent) and provided free-text suggestions for improvements. We analyzed sociodemographic and medical factors associated with poor/fair ratings, using inverse probability weights to adjust for attrition bias, and assessed free-text responses using thematic analysis. Results: Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified. Conclusions: Parents’ experiences provide guidance for improving very preterm children’s post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high. Impact: In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1–31.6%) between countries.Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy.Parents’ free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care.Parents’ lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research.