Factors affecting change in children with joint hypermobility syndrome : results of a prospective longitudinal study

Aim: To determine whether patient characteristics can predict change in health-related quality of life (HRQOL) scores or change in the number of painful joints reported by children with Joint Hypermobility Syndrome at eighteen months following the initial assessment. Methods: Children with JHS and one of their parents completed the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Multidimensional Fatigue Scale and the Pediatric Pain Questionnaire. Demographic and anthropometric measures, joint hypermobility, foot posture, strength, balance, walking capacity, physical activity and reported symptoms were recorded at baseline and again 18 months later. Stepwise multiple regression was undertaken to determine whether any combination of measures could predict the change in HRQOL and number of painful joints reported 18 months following initial assessment. Results: Eighty nine children (50 girls) aged 6–16 years were assessed at baseline. Sixty-three children (35 girls, mean age 11.2 years) were assessed 18 months later. HRQOL remained stable in 49 children, improved in 6, and declined in 8 children. Thirty-four percent of the variance in the change in child-reported HRQOL scores 18 months following baseline could be accounted for by four baseline variables – HRQOL score, body mass index centile for age, foot posture and the total number of reported painful joints (p < 0.001). For the number of painful joints reported 18 months later, child-reported fatigue and the number of painful joints reported at baseline accounted for 37% (p < 0.001) of the variance in the change scores. Conclusions: Factors amenable to change, such as BMI for age and child-reported fatigue, contribute to the decline in both the HRQOL and increase in number of painful joints experienced by children with JHS over an 18 month period. Management strategies aimed at improving these factors may assist in minimising the impact of JHS in some children’s daily lives.1 page(s