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Quality of life prediction in children with joint hypermobility syndrome
Verity Pacey1,2,3,4, Louise Tofts2,5, Roger D Adams6
1Physiotherapy Department, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Insights
Children with joint hypermobility syndrome (JHS) have poor health-related quality of life (HRQOL), with pain and fatigue significantly impacting their well-being. Parent reports are a reliable indicator of their child's HRQOL.
Area of Science:
- Pediatric Rheumatology
- Quality of Life Research
- Clinical Psychology
Background:
- Joint hypermobility syndrome (JHS) affects children's health-related quality of life (HRQOL).
- Understanding HRQOL in JHS is crucial for effective management and comparison with other chronic pediatric conditions.
Purpose of the Study:
- To assess child- and parent-reported HRQOL in children with JHS.
- To compare HRQOL in JHS with other chronic pediatric conditions.
- To identify predictors of HRQOL in children with JHS.
Main Methods:
- Eighty-nine children with JHS and their parents completed validated HRQOL, fatigue, and pain questionnaires.
- Child and parent HRQOL scores were compared.
- Regression analysis identified factors predicting HRQOL.
Main Results:
- Child and parent HRQOL scores were strongly correlated, with parent scores serving as a good proxy.
- Children with JHS reported lower physical and emotional functioning than perceived by parents.
- Pain, fatigue, and stress incontinence symptoms explained 75% of the variance in child-reported HRQOL.
Conclusions:
- Children with JHS experience significantly impaired HRQOL and fatigue.
- Parental perception of HRQOL is a reliable indicator for children with JHS.
- Pain, fatigue, and stress incontinence are key determinants of HRQOL in this population.
Aims:
To assess the child- and parent-reported health-related quality of life (HRQOL) of children with joint hypermobility syndrome (JHS), to compare these with other chronic paediatric conditions and to determine whether symptoms experienced by children with JHS can predict their HRQOL.
Methods:
Eighty-nine 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. Anthropometric measures and reported symptoms were recorded. Child-reported HRQOL scores were compared with parent report, and both child- and parent-reported HRQOL scores of children with JHS were compared with those of children with other chronic conditions. Stepwise multiple regression was undertaken to determine whether any combination of measures could predict HRQOL.
Results:
Parent- and child-reported HRQOL scores were strongly correlated (r = 0.6-0.84, all P < 0.001); however, parents of children with JHS perceived lower overall HRQOL (mean difference = 4.44, P = 0.001), physical (mean difference = 7.11, P < 0.0001) and emotional functioning (mean difference = 5.24, P = 0.011) than their children. When considered together with previously reported HRQOL scores for children with other chronic conditions, parent and child scores were similarly strongly correlated (r = 0.93, P = 0.001). Multiple regression revealed that 75% of the variance in child-reported HRQOL scores was accounted for by a child's level of pain and fatigue, and presence of stress incontinence symptoms (P < 0.0001).
Conclusion:
Children with JHS experience poor HRQOL and disabling fatigue, with parent scores providing a good proxy. Pain, fatigue and the presence of stress incontinence symptoms have the greatest impact on their HRQOL.
