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嗜酸性粒细胞性食管炎患儿及其家庭随时间推移的健康相关生活质量

Health-related quality of life over time in children with eosinophilic esophagitis and their families.

作者信息

Klinnert Mary D, Silveira Lori, Harris Rachel, Moore Wendy, Atkins Dan, Fleischer David M, Menard-Katcher Calies, Aceves Seema, Spergel Jonathan M, Franciosi James P, Furuta Glenn T

机构信息

*National Jewish Health, Denver, and University of Colorado School of Medicine, Aurora †National Jewish Health, Denver and University of Colorado School of Public Health, Aurora ‡Digestive Health Institute, Gastrointestinal Eosinophilic Diseases Program, Children's Hospital Colorado and University of Colorado School of Medicine, Aurora §National Jewish Health, Denver and Children's Hospital Colorado and University of Colorado School of Medicine, Aurora ||Rady Children's Hospital and University of California, San Diego ¶Children's Hospital of Philadelphia and Perelman School of Medicine at University of Pennsylvania, Philadelphia #Division of Gastroenterology, Hepatology, and Nutrition, Nemours Children's Hospital and University of Central Florida College of Medicine, Orlando.

出版信息

J Pediatr Gastroenterol Nutr. 2014 Sep;59(3):308-16. doi: 10.1097/MPG.0000000000000451.

Abstract

OBJECTIVES

Existing treatments for pediatric eosinophilic esophagitis (EoE) effectively reduce inflammation. The impact of treatment on health-related quality of life (HRQoL) over time for pediatric patients with EoE and their families, however, has not been systematically assessed. We hypothesized that individualized multidisciplinary treatment would improve both child and family HRQoL over time, with improvements associated with decreased symptom severity.

METHODS

Children with EoE treated in 4 tertiary care centers were enrolled. Baseline assessments occurred at the time of patients' first evaluation; follow-up assessments occurred at 2 and 6 months after baseline. Presence and severity of 8 EoE symptoms were measured. HRQoL was measured with the Pediatric Quality of Life Inventory parent proxy report, child self-report (CR), and Family Impact Module (FIM). Statistical analyses used mixed-effects modeling to test changes over time for child and family HRQoL.

RESULTS

Ninety-seven children were enrolled (ages 2-18 years, mean age 7.7 years ± 4.8, 78% boys, 80% white). Baseline mean symptom number was 3.5 (standard deviation 2.3), and symptom severity was 5.5 (standard deviation, 4.5). HRQoL scores were significantly related to symptom scores (P < 0.001). EoE symptom severity decreased during the study (P = 0.03). Pediatric Quality of Life Inventory parent proxy Total and FIM Total scores improved from baseline to 6 months (respectively, adjusted means 78.4 vs 81.0, P = 0.0006; 68.9 vs 70.1, P = 0.03). Interactions with baseline symptom severity revealed that subjects with lowest symptom severity showed the most improved HRQoL scores (P = 0.0013).

CONCLUSIONS

HRQoL improved during the course of evaluation and treatment, with positive changes being strongest for patients with less symptom severity at baseline.

摘要

目的

现有的小儿嗜酸性粒细胞性食管炎(EoE)治疗方法能有效减轻炎症。然而,尚未对治疗对EoE小儿患者及其家庭健康相关生活质量(HRQoL)随时间的影响进行系统评估。我们假设个体化多学科治疗会随着时间推移改善儿童及其家庭的HRQoL,且改善情况与症状严重程度降低相关。

方法

纳入在4家三级医疗中心接受治疗的EoE患儿。在患者首次评估时进行基线评估;在基线后2个月和6个月进行随访评估。测量8种EoE症状的存在情况和严重程度。使用儿童生活质量量表家长代理报告、儿童自评报告(CR)和家庭影响模块(FIM)来测量HRQoL。统计分析采用混合效应模型来测试儿童和家庭HRQoL随时间的变化。

结果

共纳入97名儿童(年龄2 - 18岁,平均年龄7.7岁±4.8,78%为男孩,80%为白人)。基线时平均症状数为3.5(标准差2.3),症状严重程度为5.5(标准差4.5)。HRQoL评分与症状评分显著相关(P < 0.001)。研究期间EoE症状严重程度降低(P = 0.03)。从基线到6个月,儿童生活质量量表家长代理总分和FIM总分有所改善(分别为调整后均值78.4对81.0,P = 0.0006;68.9对70.1,P = 0.03)。与基线症状严重程度的交互作用显示,症状严重程度最低的受试者HRQoL评分改善最大(P = 0.0013)。

结论

在评估和治疗过程中HRQoL得到改善,基线时症状严重程度较低的患者积极变化最为明显。

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