克罗恩病青年患者的健康相关生活质量：疾病活动度和养育压力的作用。
Health-related quality of life in youth with Crohn disease: role of disease activity and parenting stress.
作者信息
Gray Wendy N, Boyle Shana L, Graef Danielle M, Janicke David M, Jolley Christopher D, Denson Lee A, Baldassano Robert N, Hommel Kevin A
机构信息
*Department of Psychology, Auburn University, Auburn, AL †Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH ‡Department of Clinical & Health Psychology, University of Florida §Division of Pediatric Gastroenterology, Hepatology, and Nutrition, University of Florida Health, Gainesville ||Division of Gastroenterology, Hepatology, and Nutrition, Cincinnati Children's Hospital Medical Center, Schubert-Martin Inflammatory Bowel Disease Center, Cincinnati, OH ¶Division of Gastroenterology, Hepatology, and Nutrition, Center for Pediatric Inflammatory Bowel Disease, Children's Hospital of Philadelphia, Philadelphia, PA.
出版信息
J Pediatr Gastroenterol Nutr. 2015 Jun;60(6):749-53. doi: 10.1097/MPG.0000000000000696.
OBJECTIVES
Health-related quality of life (HRQOL) is an important, but understudied construct in pediatric inflammatory bowel disease. Family level predictors of HRQOL have been understudied as are the mechanisms through which disease activity affects HRQOL. The present study examines the relation between a family level factor (parenting stress) and HRQOL in youth with Crohn disease. Parenting stress is examined as a mechanism through which disease activity affects HRQOL.
METHODS
A total of 99 adolescents with Crohn disease and their parents were recruited across 3 sites. Adolescents completed the IMPACT-III (inflammatory bowel disease-specific HRQOL). Parents completed the Pediatric Inventory for Parents, a measure of medically related parenting stress that assesses stress because of the occurrence of medical stressors and stress because of the perceived difficulty of stressors. Disease activity was obtained from medical records.
RESULTS
Parenting stress because of the occurrence of medical stressors partially mediated the disease severity-HRQOL relation, reducing the relation between these variables from 49.67% to 31.58% (B= -0.56, P < 0.0001). Bootstrapping analysis confirmed that the indirect effect of disease severity on HRQOL via parenting stress significantly differed from zero. Parenting stress because of the perceived difficulty of medical stressors partially mediated the disease severity-HRQOL relation, reducing the relation from 49.67% to 30.29% (B= -0.55, P < 0.0001). The indirect effect was confirmed via bootstrapping procedures.
CONCLUSIONS
As disease severity increased, parenting stress also increased, and adolescent HRQOL decreased. Parenting stress should be considered and assessed for along with medical factors as part of a comprehensive approach to improve HRQOL in adolescents with Crohn disease.
目的
健康相关生活质量（HRQOL）在儿童炎症性肠病中是一个重要但研究不足的概念。家庭层面的HRQOL预测因素以及疾病活动影响HRQOL的机制都未得到充分研究。本研究探讨了家庭层面因素（育儿压力）与克罗恩病青少年HRQOL之间的关系。育儿压力被视为疾病活动影响HRQOL的一种机制。
方法
在3个地点共招募了99名患有克罗恩病的青少年及其父母。青少年完成了IMPACT-III（炎症性肠病特异性HRQOL）。父母完成了《父母儿科量表》，这是一种与医疗相关的育儿压力测量工具，评估因医疗压力源的发生而产生的压力以及因压力源的感知难度而产生的压力。疾病活动情况从医疗记录中获取。
结果
因医疗压力源的发生而产生的育儿压力部分介导了疾病严重程度与HRQOL之间的关系，将这些变量之间的关系从49.67%降至31.58%（B = -0.56，P < 0.0001）。自抽样分析证实，疾病严重程度通过育儿压力对HRQOL的间接效应显著不同于零。因医疗压力源的感知难度而产生的育儿压力部分介导了疾病严重程度与HRQOL之间的关系，将该关系从49.67%降至30.29%（B = -0.55，P < 0.0001）。通过自抽样程序证实了间接效应。
结论
随着疾病严重程度增加，育儿压力也增加，青少年的HRQOL下降。在改善克罗恩病青少年HRQOL的综合方法中，应将育儿压力与医疗因素一起考虑和评估。
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