Abstract
BackgroundChildren 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.MethodsCYP 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.ResultsOne 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.ConclusionsTaking MTX for JIA was viewed as helpful by most CYP but HRQoL was poorer in those who reported greater difficulty in taking MTX.
Highlights
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)
We have previously reported proxy data from mothers of CYP with JIA which found that feeling sick after taking MTX and anxiety about injections were related to poorer HRQoL [9]
Data were collected as part of the Childhood Arthritis Response to Medication Study (CHARMS), which investigates factors that influence response to MTX or anti-TNF treatment for JIA
Summary
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). Children and young people (CYP) with juvenile idiopathic arthritis (JIA) are known to have impaired healthrelated quality of life (HRQoL), on measures of the physical domain [1, 2]. This is improved significantly for many CYP by treatment with methotrexate (MTX) [3] and biologic therapies [4], HRQoL. Such proxy reports are essential in child health, in relation to younger children, but given the differences found between patient and proxy reports on other measures [10–12], CYP’s own reports of their experiences of taking medication for JIA are needed
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