Parental Understanding of Relapsing Idiopathic Nephrotic Syndrome – Where are the knowledge gaps?

AIM: To assess parental understanding of idiopathic nephrotic syndrome (INS) and its management, to enable targeted education in areas of deficit. METHODS: Families of children with at least one relapse of INS were interviewed, following a template covering key domains of (a) disease understanding, (b) management of INS and (c) access to information. Common trends and responses were identified and notable observations recorded. RESULTS: Twenty-one parents were interviewed. The mean duration of INS was 4.4 years (range 0.5-14.5 years), with a mean of two steroid-sparing agents used. Although 90% parents self-reported that they understood INS, only 29% could appropriately define relapse and 24% name potential complications. The management of INS was generally good, with most parents appropriately testing urine (81%) and managing relapses (90%). Unnecessary dietary restrictions were imposed on 57% during remission. The Internet was searched by 90% of parents for disease and drug information. Further information was desired in paper form (71%), hospital website (81%) and face-to-face workshop (90%), plus educational materials for schools. CONCLUSION: Parents overestimated their understanding of INS; however, their management was generally well done. Parents desired more information and support in various forms.