A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents.

IF 2.7 4区医学 Q3 IMMUNOLOGY

Immunotherapy Pub Date : 2024-01-01 Epub Date: 2024-07-29 DOI:10.1080/1750743X.2024.2367924

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":"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":"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.","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}

引用次数: 0

Abstract

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.

查看原文本刊更多论文

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。

目的：评估针对接受 IgG 替代治疗的原发性免疫缺陷（PID）儿童/青少年的患者赋权计划（PEP）对患者和代理生活质量（QoL）的影响。患者与方法：使用 KIDSCREEN-27 和 DISABKIDS-37 评估 19 名儿童/青少年及其父母在接受 PID-PEP 治疗前和治疗后 6 个月的健康相关 QoL。结果：与基线相比，PID-PEP 计划实施后的儿童/青少年在 KIDSCREEN-27 的以下三个维度上都有显著提高：心理健康、父母与自主和学校环境。DISABKIDS-37 总指数以及 DISABKIDS-37 6 个维度中的 5 个维度（即独立性、情绪、社会包容、社会排斥和身体）均有显著提高。替代工具的评估结果与之相当。结论PID-PEP儿童项目能明显改善PID患者的生活质量。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Immunotherapy 医学-免疫学

CiteScore

5.00

自引率

3.60%

发文量

113

审稿时长

6-12 weeks

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.