Barriers in communication and available resources to facilitate conversation about infertility with girls diagnosed with Turner syndrome

Background: Delayed discussion about infertility with individuals affected by Turner syndrome (TS) has been found to result in psychological and social harm. The aim of this study was to identify barriers experienced when discussing infertility and determine resource types that may facilitate this conversation. Methods: An electronic survey, given to caregivers of girls with TS diagnosed at <5 years. Results and conclusions: Fifty percent of parents surveyed had spoken to their daughter about their possible infertility. Parents who had not yet discussed infertility with their daughter had younger daughters and reported more barriers in having the conversation. Although most individuals did not use resources to facilitate the conversation, they did express interest in additional resources.