Parents and individuals who were born preterm rarely contribute to research study design in order to ensure that outcomes are reported that are of relevance to them. In this article we explore aspects of the measures we use and the lived experiences of three individuals with experience of having a very preterm birth or being very preterm themselves. Their experiences tell us that follow up needs to be more than 2 years, that prematurity needs to be more widely acknowledged in education and that adult services need to consider the consequences of being born early. There are encouraging signs that these important issues are becoming recognised. Individuals designing outcome studies should ensure that these important voices are heard, and their perspectives captured in such studies.
Infant, Premature, Diseases , Patient Reported Outcome Measures , Premature Birth , Research Design , Survivors , Adult , Aftercare/methods , Female , Humans , Infant, Newborn , Infant, Premature , Infant, Premature, Diseases/diagnosis , Infant, Premature, Diseases/physiopathology , Infant, Premature, Diseases/psychology , Infant, Premature, Diseases/therapy , Male , Parents/psychology , Pregnancy , Premature Birth/psychology , Professional-Patient Relations , Quality of Life , Survivors/psychology
