Maria Fasshauer, Gesine Schuermann, Norbert Gebert, Horst von Bernuth, Monika Bullinger, Sigune Goldacker, Renate Krueger, Petra Manzey, Stefanie Messner, Ellen D Renner, Henrike Ritterbusch, Uwe Schauer, Ilka Schulze, Volker Umlauf, Steffi Widmann, Ulrich Baumann
{"title":"原发性免疫缺陷患者赋权计划可提高儿童和青少年的生活质量。","authors":"Maria Fasshauer, Gesine Schuermann, Norbert Gebert, Horst von Bernuth, Monika Bullinger, Sigune Goldacker, Renate Krueger, Petra Manzey, Stefanie Messner, Ellen D Renner, Henrike Ritterbusch, Uwe Schauer, Ilka Schulze, Volker Umlauf, Steffi Widmann, Ulrich Baumann","doi":"10.1080/1750743X.2024.2367924","DOIUrl":null,"url":null,"abstract":"<p><p><b>Aim:</b> To assess a patient empowerment program (PEP) for children/adolescents with primary immunodeficiency (PID) on IgG replacement therapy regarding quality of life (QoL) in patients and proxy.<b>Patients & methods:</b> Health-related QoL was assessed using KIDSCREEN-27 and DISABKIDS-37 before and 6 months after PID-PEP kids in 19 children/adolescents and their parents.<b>Results:</b> The following three dimensions of the KIDSCREEN-27 significantly increased in children/adolescents after PID-PEP kids as compared with baseline: Psychological Well-Being, Parents & Autonomy and School Environment. Total DISABKIDS-37 index, as well as 5 of the 6 DISABKIDS-37 dimensions, significantly increased, in other words, Independence, Emotion, Social Inclusion, Social Exclusion and Physical. Evaluation of proxy instruments showed comparable results.<b>Conclusion:</b> PID-PEP kids significantly improved QoL in patients with PID.</p>","PeriodicalId":13328,"journal":{"name":"Immunotherapy","volume":" ","pages":"813-819"},"PeriodicalIF":2.7000,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11457644/pdf/","citationCount":"0","resultStr":"{\"title\":\"A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents.\",\"authors\":\"Maria Fasshauer, Gesine Schuermann, Norbert Gebert, Horst von Bernuth, Monika Bullinger, Sigune Goldacker, Renate Krueger, Petra Manzey, Stefanie Messner, Ellen D Renner, Henrike Ritterbusch, Uwe Schauer, Ilka Schulze, Volker Umlauf, Steffi Widmann, Ulrich Baumann\",\"doi\":\"10.1080/1750743X.2024.2367924\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Aim:</b> To assess a patient empowerment program (PEP) for children/adolescents with primary immunodeficiency (PID) on IgG replacement therapy regarding quality of life (QoL) in patients and proxy.<b>Patients & methods:</b> Health-related QoL was assessed using KIDSCREEN-27 and DISABKIDS-37 before and 6 months after PID-PEP kids in 19 children/adolescents and their parents.<b>Results:</b> The following three dimensions of the KIDSCREEN-27 significantly increased in children/adolescents after PID-PEP kids as compared with baseline: Psychological Well-Being, Parents & Autonomy and School Environment. Total DISABKIDS-37 index, as well as 5 of the 6 DISABKIDS-37 dimensions, significantly increased, in other words, Independence, Emotion, Social Inclusion, Social Exclusion and Physical. Evaluation of proxy instruments showed comparable results.<b>Conclusion:</b> PID-PEP kids significantly improved QoL in patients with PID.</p>\",\"PeriodicalId\":13328,\"journal\":{\"name\":\"Immunotherapy\",\"volume\":\" \",\"pages\":\"813-819\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2024-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11457644/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Immunotherapy\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/1750743X.2024.2367924\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/7/29 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q3\",\"JCRName\":\"IMMUNOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Immunotherapy","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/1750743X.2024.2367924","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/7/29 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"IMMUNOLOGY","Score":null,"Total":0}
A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents.
Aim: To assess a patient empowerment program (PEP) for children/adolescents with primary immunodeficiency (PID) on IgG replacement therapy regarding quality of life (QoL) in patients and proxy.Patients & methods: Health-related QoL was assessed using KIDSCREEN-27 and DISABKIDS-37 before and 6 months after PID-PEP kids in 19 children/adolescents and their parents.Results: The following three dimensions of the KIDSCREEN-27 significantly increased in children/adolescents after PID-PEP kids as compared with baseline: Psychological Well-Being, Parents & Autonomy and School Environment. Total DISABKIDS-37 index, as well as 5 of the 6 DISABKIDS-37 dimensions, significantly increased, in other words, Independence, Emotion, Social Inclusion, Social Exclusion and Physical. Evaluation of proxy instruments showed comparable results.Conclusion: PID-PEP kids significantly improved QoL in patients with PID.
期刊介绍：
Many aspects of the immune system and mechanisms of immunomodulatory therapies remain to be elucidated in order to exploit fully the emerging opportunities. Those involved in the research and clinical applications of immunotherapy are challenged by the huge and intricate volumes of knowledge arising from this fast-evolving field. The journal Immunotherapy offers the scientific community an interdisciplinary forum, providing them with information on the most recent advances of various aspects of immunotherapies, in a concise format to aid navigation of this complex field.
Immunotherapy delivers essential information in concise, at-a-glance article formats. Key advances in the field are reported and analyzed by international experts, providing an authoritative but accessible forum for this vitally important area of research. Unsolicited article proposals are welcomed and authors are required to comply fully with the journal''s Disclosure & Conflict of Interest Policy as well as major publishing guidelines, including ICMJE and GPP3.
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