Karen Cheng, Estrellita Co-Principal Investigator, University of California, Irvine
As our team’s data collection winds down, it is inevitable that we begin thinking about the next steps for the project. The feedback from parents has been overwhelmingly positive. They have found the data entry to not be too burdensome and have found it useful to have the data so readily accessible. They report feeling cared for and feeling a sense of security that they have an easy way to communicate with the Early Developmental Assessment Center (EDAC) nurse case manager.
Through this work, we have evidence that parents are willing and able to record observations of daily living (ODLs) about their infants, even in the first few months the infant is home. When we first started the project, our team had a lot of concerns about overburdening the parents and we strived to keep low the number of ODLs they had to monitor. But our fears were not borne out. This may have a lot to do with how usable the Estrellita app is — many thanks go to Karen Tang for her excellent work in designing the mobile app!
One next step for our team is to work on refining the ODLs and possibly add more. We would like to work with more clinicians, such as pediatricians, nurses, and specialists, to dig deeper and learn more about the kinds of data that could help them remotely monitor infants and that could help parents prepare for a conversation with a clinician.
It may be that the Estrellita app needs to support a large range of ODLs, and then allow the clinician and the parents to decide together which ones the parents should track. (Kudos to the Chronology.MD team for their “ODL Prescription” idea.) A major challenge for us at the start of this project was identifying a common set of ODLs that were of interest to a variety of clinicians and parents. Perhaps a better strategy is to allow clinicians and parents to tailor their ODL-tracking to the particular needs of the infants.
Our team remains optimistic about the potential of ODL-tracking to improve the health of preterm infants. We hope to continue our work and even to expand it to other regions of the world. A newly released March of Dimes/WHO report called “Born Too Soon” describes the problem of preterm births worldwide; worldwide, more than 10% of births are preterm. The rate in low-income countries is even higher. There is much work to be done to save these babies’ lives and to improve their health outcomes.
If you are interested in partnering with us to improve the health of preterm infants, we’d love to talk with you. You can contact Gillian at gillianrh at ics.uci.edu or Karen Cheng at kgcheng at uci.edu.