RÉSUMÉ But : Effectuer une traduction franco-canadienne de la PEDro scale sous l'appellation proposée d'Échelle PEDro et examiner la validité de son contenu. Méthodologie : Nous avons utilisé une approche modifiée de la méthodologie de validation transculturelle de Vallerand. Une traduction renversée parallèle de la PEDro scale a d'abord été effectuée à la fois par des traductrices professionnelles et des chercheurs cliniciens. Ensuite, un premier comité d'experts (P1) a examiné les versions traduites et a créé la première version expérimentale de l'Échelle PEDro. Cette version a été évaluée par un deuxième comité d'experts (P2). Finalement, 32 chercheurs cliniques ont évalué cette deuxième version expérimentale de l'Échelle PEDro à l'aide d'une échelle de clarté (étendue de 5 points) et ont proposé les modifications finales. Résultats : Pour les différents énoncés de la version finale de l'Échelle PEDro, les moyennes sur l'échelle de clarté montrent un niveau élevé puisqu'elles varient entre 4,0 et 4,7 sur un score maximal de 5 points. Conclusion : Les quatre étapes rigoureuses du processus ont permis de produire une version franco-canadienne valide de l'Échelle PEDro.
The aim of this systematic review is to describe participation in social and physical leisure activities among children and adolescents with JIA, as well as identify potential determinants of leisure participation. Electronic databases were systematically searched for articles published up until June 2013 pertaining to participation in leisure activities among youth with JIA and other rheumatic diseases. Studies were included if they measured involvement in either social or physical leisure activities. Selection and quality appraisal of articles were completed independently by two authors. Eight hundred and ninety-three articles were found through electronic and reference search. One hundred and nine full articles were reviewed to assess for eligibility. Twelve articles met inclusion criteria and findings were reviewed. Most focused on describing participation in physical rather than social activities. Results suggest that youth with JIA participated less in both social and physical leisure activities as compared to healthy peers, and those with JIA did not meet national recommendations for physical activity. Potential determinants of leisure participation were socio-demographic (age, sex), anthropometric (height, weight) and disease-related (JIA subtype, disease duration, pain, number of swollen or painful joints, stiffness, fatigue, well-being) factors. Characterization of leisure activity remains limited and mostly focused on physical activity in JIA. Assessment of more comprehensive outcome measures is warranted to obtain a better description of leisure in this population. Evidence of the influence of contextual factors as potential determinants of involvement in leisure among children with pediatric rheumatologic diseases is needed.
Parents of children with a chronic condition such as juvenile arthritis must cope with greater demands than those living with a healthy child. They must adopt different behaviours in order to lessen the impact on the family structure. Parental coping refers to the parent's specific cognitive and behavioural efforts to reduce or manage a demand on the family system. The aims of this study were: to describe coping in a cohort of parents of children with JIA; to determine whether quality of life is associated with parental coping; to explore whether socio-demographic factors such as child's age, family socioeconomic status and family structure are associated with parental coping. One hundred eighty-two parents caring for a child with JIA completed a postal survey at three times over a one-year period, which included the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), the Coping Health Inventory for Parents (CHIP) and questionnaires describing socio-demographic characteristics. Linear mixed models were employed to analyse the association between the child's quality of life and parental coping. Mean total QoL scores (JAQQ) showed that children experienced difficulty in completing specified activities at most just below 25% of the time and results fall off slightly following the 6 month time point. Mean parental coping scores for the CHIP subscales at baseline were 38.4 ± 9.0, 33.4 ± 11.6, 16.5 ± 6.1, for Maintaining Family Integration (maximum score 57), Maintaining Social Support (maximum score 54) and Understanding the Medical Situation (maximum score 24), respectively. Understanding the Medical Situation was deemed most useful. The child's QoL was associated with parental coping. Parents of children with greater psychosocial dysfunction used more coping behaviours related to Understanding the Medical Situation (β coefficient, 0.73; 95% CI, 0.01, 1.45). These findings underscore the importance of helping parents of children with JIA better understand their child's medical situation.
9 October 2020 in The Patient - Patient-Centered Outcomes Research