{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,4]],"date-time":"2026-03-04T04:58:18Z","timestamp":1772600298614,"version":"3.50.1"},"reference-count":34,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2019,12,12]],"date-time":"2019-12-12T00:00:00Z","timestamp":1576108800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acta Paediatrica"],"published-print":{"date-parts":[[2020,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>To assess parental understanding of idiopathic nephrotic syndrome (INS) and its management, to enable targeted education in areas of deficit.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010one parents were interviewed. The mean duration of INS was 4.4\u00a0years (range 0.5\u201014.5\u00a0years), with a mean of two steroid\u2010sparing agents used. Although 90% parents self\u2010reported 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\u2010to\u2010face workshop (90%), plus educational materials for schools.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Parents overestimated their understanding of INS; however, their management was generally well done. Parents desired more information and support in various forms.<\/jats:p><\/jats:sec>","DOI":"10.1111\/apa.15111","type":"journal-article","created":{"date-parts":[[2019,11,27]],"date-time":"2019-11-27T07:30:36Z","timestamp":1574839836000},"page":"1465-1472","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Parental understanding of relapsing idiopathic nephrotic syndrome\u2014Where are the knowledge gaps?"],"prefix":"10.1111","volume":"109","author":[{"given":"Edward","family":"Lo Cao","sequence":"first","affiliation":[{"name":"The Children's Hospital at Westmead Westmead NSW Australia"},{"name":"The University of Sydney Sydney NSW Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Noa","family":"Amir","sequence":"additional","affiliation":[{"name":"The Children's Hospital at Westmead Westmead NSW 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