Mon-313 Profile of Nephrotic Syndrome Attending Pediatric Renal Clinic: A Single Center Experience

Abstract

into clinical trials, and the development of targeted treatments was reported by the majority of participants. Challenges associated with genomic testing included difficulty comprehending genomic information during consultations, trouble explaining diagnosis to friends and family and dissatisfaction with length of time taken to receive test results. The need for genomic information to be simplified, specific and understandable was emphasised across all interviews. Families also expressed a desire for the provision of supplementary written and visual information and support resources to complement the information received during consultations. Participants identified the importance of developing rapport with healthcare providers, having a support network when undergoing testing and the need to provide assistance to navigate the health system. Conclusions: The study is ongoing but preliminary findings indicate that parents and families are likely to benefit from condition specific information resources and genetic counselling services beyond the renal clinic in order to optimise psycho-social adjustment during and after receiving genomic testing for kidney disease. 1. Vivante A, Hildebrandt F. Exploring the genetic basis of earlyonset chronic kidney disease.