1. Parental understanding of relapsing idiopathic nephrotic syndrome-Where are the knowledge gaps?
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Lo Cao, Edward, Amir, Noa, McKay, Ashlene, and Durkan, Anne M.
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NEPHROTIC syndrome , *KNOWLEDGE gap theory , *URINALYSIS , *INTERNET searching , *ACCESS to information , *NEPHROTIC syndrome diagnosis , *RESEARCH , *STEROIDS , *RESEARCH methodology , *MEDICAL cooperation , *EVALUATION research , *DISEASE relapse , *COMPARATIVE studies , *PARENTS , *EDUCATIONAL attainment - Abstract
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. [ABSTRACT FROM AUTHOR]- Published
- 2020
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