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首页> 外文期刊>American journal of medical genetics, Part A >Speech difficulties and patient health communication mediating effects on worry and health‐related quality of life in children, adolescents, and young adults with Neurofibromatosis Type 1
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Speech difficulties and patient health communication mediating effects on worry and health‐related quality of life in children, adolescents, and young adults with Neurofibromatosis Type 1

机译：言语困难和患者健康通信中调解对儿童，青少年和患有神经纤维瘤病类型的年轻成年人的忧虑和健康相关的生活质量的影响

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Abstract The objective was to investigate the serial mediating effects of speech difficulties, patient health communication, and disease‐specific worry in the relationship between neurofibromatosis (NF) symptoms (pain and skin symptoms) and total generic health‐related quality of life (HRQOL) in children, adolescents, and young adults with NF Type 1 (NF1) from the patient perspective. The Speech, Communication, Worry, Pain, Skin Itch Bother, and Skin Sensations Scales from the Pediatric Quality of Life Inventory (PedsQL) NF1 Module and the PedsQL 4.0 Generic Core Scales were completed in a multi‐site national study by 305 patients ages 5–25?years. A serial multiple mediator model analysis was conducted to test the hypothesized sequential mediating effects of speech difficulties, health communication, and worry as intervening variables in the association between NF1 symptoms and HRQOL. Symptoms predictive effects on total generic HRQOL were serially mediated by speech difficulties, patient health communication, and worry. In predictive analytics models utilizing hierarchical multiple regression analyses with age and gender demographic covariates, the pain, skin itch bother, and skin sensations multiple mediator models accounted for 61%, 59%, and 56% of the variance in generic HRQOL ( p ??.001), reflecting large effect sizes. Speech difficulties, patient health communication, and disease‐specific worry explain in part the mechanism of symptoms predictive effects on total generic HRQOL in pediatric patients with NF1. Identifying NF1‐specific predictors and serial mediators of total generic HRQOL in pediatric patients with NF1 from the patient perspective enables a patient‐centered comprehensive care approach for children, adolescents, and young adults with NF1.
机译：摘要目的是调查语音困难，患者健康沟通和疾病特异性症状（NF）症状（疼痛和皮肤症状）和总通用健康状况（HRQOL）之间关系的串联调解效果在儿童，青少年和NF类型1（NF1）的年轻成年人，从患者的角度来看。从寿命库存（PEDSQL）NF1模块和PEDSQL 4.0通用核心尺度的致辞，通信，忧虑，疼痛，皮肤瘙痒和皮肤感应尺度均在505岁的患者中完成了305名患者-25年。进行了串行多介体模型分析，以测试语音困难，健康通信和担心的假设顺序调解效果，因为NF1症状与HRQOL之间的关联中的干预变量。症状通过语音困难，患者健康沟通和担忧序列介导对总通用HRQOL的预测效果。在预测分析模型利用年龄和性别人口协调会分析分层分析，疼痛，皮肤瘙痒和皮肤感应多个介质模型占通用HRQOL的差异的61％，59％和56％（p？＆lt ; 001），反映大效果大小。言语困难，患者健康沟通和疾病特异性担心在症状对NF1小儿患者总通用HRQOL的症状预测作用的机制中解释。从患者的角度识别儿科患者的NF1特异性HRQOL总通用HRQOL的序列介质，使患者为患者，青少年和NF1的年轻成年人为中心综合保健方法。

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