Do mothers and fathers hold similar views about their child's arthritis?

Abstract

Objective. Evaluations of the well-being of children with juvenile idiopathic arthritis (JIA) typically rely on parents as proxy respondents. An assumption of several studies appears to be that mothers' and fathers' ratings are interchangeable, as reports do not always specify which parent completed the assessments nor, in repeated measures, whether they were completed by the same parent. The aim of this study was to examine the level of agreement between mothers' and fathers' ratings of their child's quality of life (QOL) and to identify possible predictors of disagreement. Methods. Mothers and fathers (n ‫؍‬ 82) of children with JIA completed ratings of their child's symptoms, QOL, and measures of their mood and beliefs about their child's illness and treatment. The number of active and limited joints and the physician's global assessment were also recorded. Results. Intraclass correlation coefficients between mothers' and fathers' ratings of physical and psychosocial QOL were high (0.824 and 0.755, respectively). However, calculation of difference scores revealed that 70.6% and 65.9%, respectively, were classified as discordant. Where parents differed, the direction of difference was not systematic. Discordance in parents' mood states and in their illness and treatment beliefs explained a small amount of the variance in discordance in QOL. Conclusion. It should not be assumed that proxy ratings of a child's well-being can be generalized from one parent to the other. Studies that take repeated assessments should ensure that the same parent completes assessments at all time points. Other factors that may explain discordance between parents' ratings need to be explored.

An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe?

“…The present ICC values were also greater than those reported in children and adolescents with cancer (0.22-0.68) [24] and sickle cell disease (0.30-0.45) [65]. The present greater ICC values may have resulted from the large percentage of female patients and their mothers being surveyed; however, this dyad gender effect has not been observed previously [16,54,66]. While still significant, the lower observed ICC of 0.48 for the PedsQL TM parent-child Physical Health Summary Scores for 8-12 year olds may represent greater self-perception and self-awareness of physical limitations in the younger child.…”

Agreement between Proxy and Adolescent Assessment of Disability, Pain, and Well-Being in Juvenile Idiopathic Arthritis

“…Agreement between mothers and fathers has been reported as good, 3 although agreement in ratings of current levels of pain were less concordant between children and their fathers compared with children and their mothers. Mulligan et al 30 also found disagreement between mothers and fathers in their assessment of their child’s JIA, although the direction of the disagreement was not systematic. Neither of these studies provided specific analysis on adolescents limiting comparison with this study.…”

Mothers’ reports of the difficulties that their children experience in taking methotrexate for Juvenile Idiopathic Arthritis and how these impact on quality of life

“…Participants were recruited as part of the SPARKS Childhood Arthritis Response to Medication Study (SPARKS-CHARMS), which examines genetic, immunobiological and psychological aspects of response to MTX or anti-TNF therapy given for arthritis [9,10,12,13]. The study recruits children of any age with juvenile idiopathic arthritis (JIA), defined by ILAR criteria [14], who are under the care of the Rheumatology service at Great Ormond Street Hospital for Children (GOSH) or the Adolescent Rheumatology service at University College Hospital, London, UK.…”

“…Although fathers and the patients themselves participated in the study, mothers were the largest respondent group. We have previously shown that there can be high levels of discordance between mothers’ and fathers’ views about their child’s JIA [9], and others have reported discordance between parent and child reports [16], so to help ensure consistency we have limited this analysis to reports from one parent (mothers). This analysis is restricted to mothers of those children in the study who had taken MTX for at least six months, and were still taking it at the time the questionnaires were completed.…”

“…As parents are key facilitators in their child’s medication regime [8], it is also important to gain an insight into parents’ views of MTX and whether any difficulties their child experiences in taking MTX affects their willingness to allow their child to try other medications that may be prescribed in the future. The Sport Aiding Medical Research for Kids (SPARKS) Childhood Arthritis Response to Medication Study (CHARMS) [9,10] aims to define the factors that influence the response of children with JIA to methotrexate. As part of the study we investigated the difficulties arising from the use of MTX for JIA.…”