Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study.
Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study.
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DOI：
10.1186/1477-7525-11-30
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发表时间：
2013-03-04
影响因子：
3.6
通讯作者：
DeWalt DA
中科院分区：
文献类型：
--
作者：
Gipson DS;Selewski DT;Massengill SF;Wickman L;Messer KL;Herreshoff E;Bowers C;Ferris ME;Mahan JD;Greenbaum LA;MacHardy J;Kapur G;Chand DH;Goebel J;Barletta GM;Geary D;Kershaw DB;Pan CG;Gbadegesin R;Hidalgo G;Lane JC;Leiser JD;Plattner BW;Song PX;Thissen D;Liu Y;Gross HE;DeWalt DA
肾病综合征（NS）是儿科肾脏病学中的一种常见疾病，其特点是复发和缓解病程，并以水肿的存在为特征，可显着影响儿童和青少年健康相关的生活质量。 PROMIS 儿科测量旨在公开、高效、精确且适用于多种疾病，以评估患者的症状报告和生活质量。本研究旨在评估患有 NS 的儿童和青少年通过计算机完成 PROMIS 评估的能力，并启动儿科 NS 简短表格和完整项目库的有效性评估。成功测量患者报告的结果将有助于我们了解 NS 对儿童和青少年的影响。这项横断面研究纳入了来自北美 16 个参与机构的 151 名 8-17 岁患有 NS 的儿童和青少年。孩子们使用基于网络的界面完成了 PROMIS 儿科抑郁、焦虑、社交同伴关系、疼痛干扰、疲劳、活动能力和上肢功能测量。对经历由存在水肿定义的活动性 NS 的患者 (n = 53) 和由不存在水肿定义的非活动性 NS 患者 (n = 96) 的反应进行比较。所有 151 名儿童和青少年均成功通过计算机完成了 PROMIS 评估。正如假设的那样，患有活动性 NS 的儿童和青少年在 4 项自我报告的指标（焦虑、疼痛干扰、疲劳和活动能力）上存在显着差异。活动性 NS 儿童与非活动性 NS 儿童的抑郁、同伴关系和上肢功能没有差异。多变量分析表明，在调整人口特征后，PROMIS 仪器对 NS 疾病活动仍然敏感。患有 NS 的儿童和青少年能够使用基于网络的界面成功完成 PROMIS 工具。基于计算机的儿科 PROMIS 测量有效地区分了患有活动性和非活动性 NS 的儿童和青少年。本研究中发现的领域评分与之前调查患有 NS 的儿童和青少年的健康相关生活质量的报告一致。本研究确立了 PROMIS 儿科措施在 NS 儿童和青少年中的已知群体有效性和可行性。
Nephrotic syndrome (NS) represents a common disease in pediatric nephrology typified by a relapsing and remitting course and characterized by the presence of edema that can significantly affect the health-related quality of life in children and adolescents. The PROMIS pediatric measures were constructed to be publically available, efficient, precise, and valid across a variety of diseases to assess patient reports of symptoms and quality of life. This study was designed to evaluate the ability of children and adolescents with NS to complete the PROMIS assessment via computer and to initiate validity assessments of the short forms and full item banks in pediatric NS. Successful measurement of patient reported outcomes will contribute to our understanding of the impact of NS on children and adolescents. This cross-sectional study included 151 children and adolescents 8-17 years old with NS from 16 participating institutions in North America. The children completed the PROMIS pediatric depression, anxiety, social-peer relationships, pain interference, fatigue, mobility and upper extremity functioning measures using a web-based interface. Responses were compared between patients experiencing active NS (n = 53) defined by the presence of edema and patients with inactive NS (n = 96) defined by the absence of edema. All 151 children and adolescents were successfully able to complete the PROMIS assessment via computer. As hypothesized, the children and adolescents with active NS were significantly different on 4 self-reported measures (anxiety, pain interference, fatigue, and mobility). Depression, peer relationships, and upper extremity functioning were not different between children with active vs. inactive NS. Multivariate analysis showed that the PROMIS instruments remained sensitive to NS disease activity after adjusting for demographic characteristics. Children and adolescents with NS were able to successfully complete the PROMIS instrument using a web-based interface. The computer based pediatric PROMIS measurement effectively discriminated between children and adolescents with active and inactive NS. The domain scores found in this study are consistent with previous reports investigating the health-related quality of life in children and adolescents with NS. This study establishes known-group validity and feasibility for PROMIS pediatric measures in children and adolescents with NS.
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影响因子：
3.2
作者：
Hinds, Pamela S.;Nuss, Suzanne L.;DeWalt, Darren A.
通讯作者：
DeWalt, Darren A.
影响因子：
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影响因子：
19.6
作者：
通讯作者：
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影响因子：
8
作者：
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通讯作者：
Greenbaum, Larry A.