青少年特发性关节炎患者服用甲氨蝶呤的体验：一项针对儿童和青少年的横断面调查结果
The experience of taking methotrexate for juvenile idiopathic arthritis: results of a cross-sectional survey with children and young people.
作者信息
Mulligan Kathleen, Wedderburn Lucy R, Newman Stanton
机构信息
School of Health Sciences, City University London, Northampton Square, London, EC1V 0HB, UK.
East London NHS Foundation Trust, London, UK.
出版信息
Pediatr Rheumatol Online J. 2015 Dec 12;13:58. doi: 10.1186/s12969-015-0052-6.
BACKGROUND
Children and young people (CYP) with juvenile idiopathic arthritis (JIA) are known to have impaired health-related quality of life (HRQoL), which is improved significantly for many by treatment with methotrexate (MTX). However, a significant proportion of CYP experience difficulties in taking MTX, which may reduce its potential benefits for HRQoL. The aim of this research was to examine how CYP with JIA perceive MTX treatment and how this relates to HRQoL.
METHODS
CYP aged 8-16 years taking MTX for JIA completed an adapted Parent Adherence Report Questionnaire, which contains 100 mm visual analogue scales, to assess difficulty taking MTX, adherence, frequency of negative reactions and helpfulness of MTX. They also completed the Pediatric Quality of Life Inventory (PedsQL) Generic and Rheumatology scales. We collected data on age, gender, JIA course, disease duration, MTX duration of use, route and dose. Number of inflamed and limited joints were indicators of disease severity.
RESULTS
One hundred sixteen CYP participated. Most considered MTX helpful (median 87; interquartile range (IQR) 50.75-98) and reported adherence was high (median 98; IQR 90-100). There was greater variability on scores for difficulty (median 22; IQR 2-69) and frequency of negative reactions (median 14.5; IQR 1.25-80). Mean (S.D.) scores on the PedsQL Physical and Psychosocial subscales were 71.63 (24.02) and 71.78 (19.59) respectively, indicating poorer HRQoL than that reported by healthy children. After controlling for demographic and disease variables, poorer physical HRQoL was significantly accounted for by greater difficulty in taking MTX. Poorer psychosocial HRQoL was significantly accounted for by subcutaneous MTX administration, a lower rating of MTX helpfulness and a greater reported difficulty in taking MTX.
CONCLUSIONS
Taking MTX for JIA was viewed as helpful by most CYP but HRQoL was poorer in those who reported greater difficulty in taking MTX.
背景
已知患有幼年特发性关节炎（JIA）的儿童和青少年（CYP）的健康相关生活质量（HRQoL）受损，对许多人而言，甲氨蝶呤（MTX）治疗可显著改善这种情况。然而，相当一部分CYP在服用MTX时遇到困难，这可能会降低其对HRQoL的潜在益处。本研究的目的是调查患有JIA的CYP如何看待MTX治疗以及这与HRQoL有何关联。
方法
年龄在8至16岁、因JIA服用MTX的CYP完成了一份改编后的家长依从性报告问卷，其中包含100毫米视觉模拟量表，以评估服用MTX的困难程度、依从性、不良反应发生频率以及MTX的帮助程度。他们还完成了儿童生活质量量表（PedsQL）通用版和风湿病量表。我们收集了年龄、性别、JIA病程、疾病持续时间、MTX使用持续时间、给药途径和剂量的数据。炎症关节数和受限关节数是疾病严重程度的指标。
结果
116名CYP参与了研究。大多数人认为MTX有帮助（中位数为87；四分位间距（IQR）为50.75 - 98），且报告的依从性较高（中位数为98；IQR为90 - 100）。在困难程度得分（中位数为22；IQR为2 - 69）和不良反应发生频率得分（中位数为14.5；IQR为1.25 - 80）上存在更大的变异性。PedsQL身体和心理社会子量表的平均（标准差）得分分别为71.63（24.02）和71.78（19.59），表明HRQoL比健康儿童报告的情况更差。在控制了人口统计学和疾病变量后，服用MTX的困难程度越大，身体HRQoL越差这一情况具有显著统计学意义。皮下注射MTX、对MTX帮助程度的评分较低以及报告的服用MTX困难程度越大，心理社会HRQoL越差这一情况具有显著统计学意义。
结论
大多数CYP认为服用MTX对治疗JIA有帮助，但报告服用MTX困难程度较大的人HRQoL较差。
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