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.
What is this study about? This study evaluated a patient empowerment program (PEP) for children and adolescents with primary immunodeficiency (PID) on immunoglobulin replacement therapy. The goal was to see if the program improved quality of life (QoL). Two commonly administered questionnaires were used to measure QoL before and 6 months after participating in the program.What were the results? Significant improvements were found in several dimensions including Psychological Well-Being, Parents & Autonomy and School Environment. Additionally, overall QoL scores and dimensions such as Independence, Emotion, Social Inclusion, Social Exclusion and Physical also improved. Assessments by the parents confirmed these findings.What do the results mean? The PID-PEP kids program significantly improved the QoL for these young patients.
What is this study about? This study evaluated a patient empowerment program (PEP) for children and adolescents with primary immunodeficiency (PID) on immunoglobulin replacement therapy. The goal was to see if the program improved quality of life (QoL). Two commonly administered questionnaires were used to measure QoL before and 6 months after participating in the program.What were the results? Significant improvements were found in several dimensions including Psychological Well-Being, Parents & Autonomy and School Environment. Additionally, overall QoL scores and dimensions such as Independence, Emotion, Social Inclusion, Social Exclusion and Physical also improved. Assessments by the parents confirmed these findings.What do the results mean? The PID-PEP kids program significantly improved the QoL for these young patients.
摘要：
目的：评估针对原发性免疫缺陷（PID）儿童/青少年的患者授权计划（PEP）在IgG替代疗法中关于患者和代理人的生活质量（QoL）。患者和方法：在19名儿童/青少年及其父母的PID-PEP儿童之前和之后6个月，使用KIDSCREEN-27和DISABKIDS-37评估与健康相关的QoL。结果：与基线相比，PID-PEP儿童后儿童/青少年的KIDSCREEN-27的以下三个维度显着增加：心理健康，家长和自主性和学校环境。DISABKIDS-37指数，以及6个DISABKIDS-37尺寸中的5个，显著增加,换句话说,独立,情感,社会包容,社会排斥和物质。对代理工具的评估显示出可比的结果。结论：PID-PEP患儿可显著改善PID患者的QoL。
这项研究是关于什么？这项研究评估了针对原发性免疫缺陷（PID）儿童和青少年的免疫球蛋白替代疗法的患者赋权计划（PEP）。目标是查看该计划是否提高了生活质量（QoL）。在参与该计划之前和之后6个月，使用了两个常用的问卷来测量QoL。结果是什么？在几个方面发现了显著的改善，包括心理幸福感，家长和自主性和学校环境。此外,总体QoL分数和维度，如独立性，情感,社会包容,社会排斥和身体也有所改善。父母的评估证实了这些发现。结果意味着什么？PID-PEP儿童计划显着改善了这些年轻患者的QoL。
这项研究是关于什么？这项研究评估了针对原发性免疫缺陷（PID）儿童和青少年的免疫球蛋白替代疗法的患者赋权计划（PEP）。目标是查看该计划是否提高了生活质量（QoL）。在参与该计划之前和之后6个月，使用了两个常用的问卷来测量QoL。结果是什么？在几个方面发现了显著的改善，包括心理幸福感，家长和自主性和学校环境。此外,总体QoL分数和维度，如独立性，情感,社会包容,社会排斥和身体也有所改善。父母的评估证实了这些发现。结果意味着什么？PID-PEP儿童计划显着改善了这些年轻患者的QoL。
