Health-related quality of life in children with juvenile idiopathic arthritis – child’s and parent’s point of view

Abstract

ObjectivesTo assess the quality of life (QoL) of children suffering from juvenile idiopathic arthritis (JIA) in Poland, to compare QoL of children with JIA and healthy children, and to compare children’s and parents’ assessments of QoL.Material and methodsThe KIDSCREEN-52 questionnaire (children’s and parents’ version) was used to assess the quality of life. The QoL in JIA patients and healthy peers from European and Polish reference groups was compared by the t-test. The Bland-Altman method was used to evaluate child and parent assessment agreement.ResultsEighty-nine questionnaires were obtained from children (median age: 14 years; 62% female; JIA history longer than 1 year) and 84 questionnaires from parents. The QoL of JIA patients was lower than in healthy peers from the European reference group in terms of physical well-being (p < 0.001), psychological well-being (p = 0.011), autonomy (p < 0.001) and social support and peers (p < 0.001). The QoL of JIA patients compared with the QoL of children from the Polish reference group was lower only in terms of physical well-being (p < 0.001), whereas it was higher in terms of moods and emotions (p = 0.023), parent relations and home life (p = 0.005) and financial resources (p < 0.001). In most terms the assessment performed by the parent was lower than the child’s. The most significant differences were observed for physical well-being (p < 0.001), psychological well-being (p = 0.016), and self-perception (p = 0.013).ConclusionsThe present study is the first assessment of QoL of JIA children in Poland. In our study the quality of life in JIA children was lower than in healthy peers. Discrepancies between the assessment of the child’s QoL performed by the child and the parent were found. Both assessments should be taken into account in clinical practice as well as in research studies.

Health‐related quality of life in children with early‐stage juvenile idiopathic arthritis

“…Gender differences between children's and parent's assessments of HRQOL have been reported (Lundberg et al, 2012). These discrepancies might be due to the differing perceptions of children and parents (Manczak, Rutkowska-Sak, & Raciborski, 2016;Sawyer et al, 2004;Upton, Lawford, & Eiser, 2008). An earlier study hypothesized that, due to their optimism and flexibility, children may score their well-being more positively than their parents (Ravelli et al, 2001).…”

The Psychological Impact of Dental Aesthetics in Patients with Juvenile Idiopathic Arthritis Compared with Healthy Peers: A Cross-Sectional Study

“…A possible explanation for less attention paid by adolescents with JIA to their dental aesthetic could be due to some aspects related to their daily lives. Indeed, JIA patients usually present a lower physical well-being dimension associated with increased difficulties in performing regular physical activity as compared with healthy subjects [49,50], and this was highly correlated with a lower HRQoL among JIA adolescents [51]. Moreover, these patients are constantly treated for their chronic pathology and they also undergo regular medical consultations due to pain, physical disability and eye-related problems (uveitis) that negatively affect their emotions, their possibility to attend school and their daily activities [52].…”

“…The sample comprised 130 subjects:50 subjects with JIA (20 boys, 30 girls, mean age 15.0 ± 1.7, JIA group) and 80 controls (30 boys, 50 girls, mean age 15.1 ± 1.6, Control group). The total sample presented a mean age of 15.0 ± 1.6 years.…”

Early detection of high disease activity in juvenile idiopathic arthritis by sequential monitoring of patients' health‐related quality of life scores

“…Thus, it is often inconvenient to obtain the JADAS score in a routine basis. On the other hand, health‐related quality of life (HRQOL) scores have been found to be the most relevant patient‐reported outcomes (PROs) for assessment of patients' suffering from chronic diseases, including JIA (cf., Mańczak, Rutkowska‐Sak, & Raciborski, 2016). HRQOL is a comprehensive and multi‐dimensional concept that encompasses physical, mental, emotional, and social elements associated with health (cf., WHOQOL Group, 1998).…”