20 research outputs found
Are parents' views about their child's treatment for juvenile idiopathic arthritis (JIA) related to evaluations of their child's quality of life (QoL)? â SPARKS CHARM study
Recommended from our members
Mothers' reports of the difficulties that their children experience in taking methotrexate for Juvenile Idiopathic Arthritis and how these impact on quality of life
BACKGROUND: Children who take methotrexate for juvenile idiopathic arthritis may experience side effects, including nausea and vomiting, leading to anticipatory nausea in some children, and fear of injections or blood tests. The aim of this study was to examine the prevalence and extent of these difficulties and their impact on quality of life. METHODS: Participants were mothers of children with JIA who were currently taking methotrexate (MTX). Mothers completed a questionnaire about MTX that was developed for the study, two questions from the treatment subscale of the Pediatric Quality of Life Inventory (PedsQL) Rheumatology scale to assess needle-related problems and the Child Health Questionnaire 50-item parent version (CHQ-PF50) to assess health-related quality of life (HRQoL).
RESULTS: 171 mothers participated in the study. More than half of children were reported to have experienced one or more of: nausea or vomiting after taking MTX, anticipatory nausea, fear of blood tests or fear of injections. There was no significant difference in reported rates of sickness or needle-related problems between MTX responders (ACR70 or above), partial responders (ACR30 or ACR50) and non-responders. In multivariate analyses, variables that were significant independent predictors of one or more MTX-related difficulties included younger age, taking MTX subcutaneously and having a larger number of currently active joints. Feeling sick after taking MTX was a significant independent predictor of poorer scores on the physical summary scale of the CHQ-PF50. Anxiety about injections and feeling sick after taking MTX were significant independent predictors of poorer scores on the psychosocial summary scale.
CONCLUSIONS: Difficulties in taking MTX are experienced by a significant proportion of children with JIA and these have an adverse impact on HRQoL. Approaches to help minimize these difficulties are required
Investigating the use of a limited core outcome variable set for the classification of response following methotrexate treatment in juvenile idiopathic arthritis (JIA)
Investigating which variables from the core outcome variables in juvenile idiopathic arthritis (JIA) are the best predictors of classification as a responder to treatment with methotrexate (MTX)
Can inflammatory markers predict response to methotrexate in JIA? Results from the CHARM study
Recommended from our members
Adaptation of the methotrexate in rheumatoid arthritis knowledge questionnaire (MiRAK) for use with parents of children with juvenile idiopathic arthritis (JIA)
Background: Although Methotrexate (MTX) is one of the most commonly prescribed disease-modifying drugs in JIA no questionnaire exists that assesses the knowledge of parents about this drug. A 60-item questionnaire was recently developed to measure rheumatoid arthritis (RA) patientsâ knowledge about MTX; the Methotrexate in Rheumatoid Arthritis Knowledge Test (MiRAK; Ciciriello et al. (Arthritis Rheum 62:10â1009, 2010)). This study aimed to adapt the MiRAK for parents of children with JIA.
Methods: Adaption of the MiRAK involved: 1) email consultations with clinicians working in the field of paediatric rheumatology (Panel 1) to ascertain the potential adaptations of the MiRAK from a clinical perspective, 2) synthesis of cliniciansâ suggestions by a panel of experts, researchers and MiRAK developers (Panel 2) to reach consensus on which items needed to be modified and create a draft Methotrexate in Juvenile Idiopathic Arthritis Knowledge Test (MiJIAK), 3) a review of the draft by 5 parents of children with JIA (Panel 3) using the cognitive âthink-aloudâ method, 4) a second consultation with Panel 2 to review parentsâ suggestions and determine the final items.
Results: A total of 9 items remained unchanged, e.g. âMethotrexate is effective at relieving joint stiffnessâ, 19 were deemed inappropriate in the paediatric setting and deleted, e.g. âIt is safe to become pregnant 3 weeks after methotrexate has been stoppedâ, 32 underwent editorial changes largely to indicate that the questionnaire was about the children with JIA, e.g. âIf you forget to give a dose of Methotrexate, you can still take it the next dayâ became âIf your child misses a dose of Methotrexate, they can still take it the next dayâ, and 1 new item was added. A new 42-item questionnaire was produced and was found to be well understood by parents of children with JIA.
Conclusions: The systematic modification of the MiRAK, a patient-centred MTX knowledge questionnaire, has generated a comprehensive new questionnaire for use in the JIA setting. The wide consultation process, including cognitive testing, has ensured the tool is both relevant and acceptable to clinicians and will therefore be a valuable addition in understanding the parentsâ perspective of this treatment in JIA
Characterising inflammatory markers in two childhood autoimmune diseases (JIA and JDM) pre and post methotrexate
Recommended from our members
The Impact of Response to MTX on the Illness and Treatment Beliefs of Parents of Children with JIA
Background: Research on adult patients with chronic illness has shown that their illness beliefs are associated with patient reported outcomes. There is limited research focusing on the illness and treatment beliefs of parents of ill children. The aim of this study was to discern if treatment success, as measured by the ACR Pediatric (Ped) criteria has an impact upon parentsâ beliefs about their childâs illness and treatment.
Methods: The data of 157 mothers and 75 fathers was used in this cross-sectional study. Parents were asked to complete a series of questionnaires including the Illness Perception Questionnaire Revised (IPQ-R) and the Treatment Representation Inventory (TRI). Parents of children, who reached the ACR Ped 70 level of improvement in arthritis were compared to parents of non-responders using Chi-Square Tests and ANOVAs.
Results: A number of significant differences in parentsâ illness perceptions were found. Mothers of non-responders had a stronger belief in the unpredictable nature of the arthritis (pâ=â0.01) and mothers of ACR Ped 70 responders showed a stronger belief in their ability to control the arthritis (pâ=â0.03). Fathers of ACR Pediatric 70 responders had a stronger belief in their childâs understanding of the arthritis (pâ=â0.01) and in the arthritis being an acute condition (pâ=â0.03). Only one significant difference was found in parentsâ treatment representations. Mothers of ACR Ped 70 responders had a stronger belief in the ability of the treatment to cure the arthritis. The means of the scale assessing the value of treatment were high for all mothers and fathers. Other treatment and illness beliefs were in the mid-range reflecting uncertain beliefs.
Conclusions: With the exception of mothersâ beliefs in the ability of the treatment to cure the arthritis, no differences were found in the treatment beliefs between parents of ACR Ped 70 responders and parents of non-responders. This suggests that with exception of beliefs in cure, the treatment success is not generally reflected in parentsâ treatment beliefs. However, treatment success influenced a number of parentsâ beliefs about their childâs illness. These differences were all in the expected direction. Notably, on a number of the scales mothers and fathers consistently showed a degree of uncertainty in their beliefs about their childâs illness and treatment, regardless of treatment success. This uncertainty may reflect the fact that currently there is no cure for JIA. Illness uncertainty has been found to be positively associated with negative psychological outcomes in patients with chronic illness. The findings in this study suggest that parents of children with JIA may require additional support to deal with the uncertainty in relation to their childâs illness and treatment