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Vaillantfonds"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr"],"abstract":"<jats:title>Abstract<\/jats:title><jats:p>This study assessed HRQoL and emotional and behavioral difficulties (EBD) and associated variables in children with first onset SSNS. While relapsing steroid-sensitive nephrotic syndrome (SSNS) in children is associated with lower health-related quality of life (HRQoL), little is known about first onset. Four weeks after onset, children (2\u201316\u00a0years) and\/or their parents who participated in a randomized placebo-controlled trial, completed the Pediatric Quality of Life Inventory 4.0 (PedsQL) and Strengths and Difficulties Questionnaire (SDQ) to measure HRQoL and EBD, respectively. Total and subscale scores and the proportion of children with impaired HRQoL (&gt;\u20091 SD below the mean of the reference group) or SDQ clinical scores (&lt;\u200910<jats:sup>th<\/jats:sup> and\u2009&gt;\u200990<jats:sup>th<\/jats:sup> percentile) were compared to the Dutch general population (reference group). Regression analyses were used to identify associated variables. Compared to the reference group, children 8\u201318\u00a0years reported significantly lower total HRQoL, and physical and emotional functioning. A large proportion (&gt;\u200945%) of these children had impaired HRQoL. There were no differences in HRQoL between children 2\u20137\u00a0years and the reference group, except for higher scores on social functioning (5\u20137\u00a0years). Similar proportions of SSNS and reference children scored within the clinical range of SDQ subscales. Age, sex, and steroid side-effects were negatively associated with HRQol and\/or EBD.<\/jats:p><jats:p>\u00a0 \u00a0<jats:italic>Conclusion<\/jats:italic>: This study showed that HRQoL and EBD are affected in children of different ages with first onset SSNS. This calls for more awareness from healthcare providers and routinely monitoring of HRQoL and EBD in daily clinical care to prevent worsening of symptoms.<\/jats:p><jats:p>\u00a0 \u00a0<jats:italic>Clinical trial registry<\/jats:italic>: Netherlands Trial Register (<jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"https:\/\/trialsearch.who.int\/\">https:\/\/trialsearch.who.int\/<\/jats:ext-link>; NTR7013), date of registration: 02 June 2018.<jats:table-wrap><jats:table><jats:tbody>\n                    <jats:tr>\n                      <jats:td colspan=\"2\"><jats:bold>What is Known:<\/jats:bold><jats:italic>\u2022\u00a0 Health-related quality of life (HRQoL) is lower and emotional and behavioral difficulties (EBD) is more affected in children with frequently-relapsing and steroid-dependent nephrotic syndrome.<\/jats:italic><\/jats:td>\n                    <\/jats:tr>\n                    <jats:tr>\n                      <jats:td colspan=\"2\"><jats:bold>What is New:<\/jats:bold><jats:italic>\u2022\u00a0 HRQoL and EBD are affected in children with first onset steroid-sensitive nephrotic syndrome compared to a reference group of the Dutch general population.<\/jats:italic><jats:italic>\u2022 To what extent HRQoL and EBD are affected depends on the age of the patient.<\/jats:italic><\/jats:td>\n                    <\/jats:tr>\n                  <\/jats:tbody><\/jats:table><\/jats:table-wrap><\/jats:p>","DOI":"10.1007\/s00431-023-05135-5","type":"journal-article","created":{"date-parts":[[2023,8,7]],"date-time":"2023-08-07T14:01:56Z","timestamp":1691416916000},"page":"4605-4614","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Health-related quality of life of children with first onset steroid-sensitive nephrotic syndrome"],"prefix":"10.1007","volume":"182","author":[{"given":"Floor","family":"Veltkamp","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lorynn","family":"Teela","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michiel A. 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The study protocol was approved by an institutional review board (Netherlands: Amsterdam University Medical Centers, University of Amsterdam, 2017_301; Belgium: Onze Lieve Vrouwziekenhuis Aalst, 2019\/042) and competent authorities of both countries.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"Written informed consent and\/or assent (as appropriate) was obtained from the child (age\u2009\u2265\u200912\u00a0years) and legal representative(s).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"All authors have no financial relationship relevant to this article to disclose.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Financial disclosure"}},{"value":"The authors have no competing conflicts to disclose.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interest"}}]}}