Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis

Abstract

Improved health-related quality of life (HRQOL) is a key treatment goal for juvenile idiopathic arthritis (JIA), where the task is optimal disease management rather than achieving a cure (1). HRQOL is a key outcome in clinical trials as well as clinical care. Implicit in the measurement of HRQOL as a JIA outcome is the notion that medical interventions, such as drug therapies, can affect not only clinical parameters (pain, joint count, and functional status) but also more distal outcomes, such as HRQOL. The article by Haverman et al shows, as do others, that HRQOL is worse for children with JIA than for their nonaffected peers (2,3). However, Haverman et al go beyond the current literature in 2 important ways. First, using patient self-report, they show how widespread low HRQOL is in this population. Their analysis documents that half of children with JIA have impaired ( 1 SD below the norm) HRQOL compared to 16% of their nonaffected peers. It is one thing to know that children with JIA have lower HRQOL compared to healthy peers, yet quite another to understand that fully half of children in treatment experience impaired HRQOL. Such data should be a wakeup call to clinicians that this is a serious problem. This leads to the second contribution by Haverman et al, i.e., they include nonmedical factors when considering the different issues that may affect HRQOL in children with JIA. In addition to the traditional clinical predictors of pain and functional status, the authors document that subjective burden of medication use and school absences are predictors of impaired HRQOL. This has clear clinical implications; although current medical treatments target symptoms such as pain and physical functioning, standard treatment regimens do not include treatments targeted at nonmedical factors such as these. Other research has documented that a substantial proportion of children with JIA who report no or mild clinical symptoms experience suboptimal HRQOL and that a considerable proportion of variance remains unaccounted for in predicting HRQOL using clinical symptoms and disease activity (4). The findings of Haverman et al showing that nonmedical factors are related to HRQOL underscores the growing imperative for clinicians to assess and attend to “disorders of HRQOL.” More research is needed to explore additional nonmedical factors that may lead to impaired HRQOL. And longitudinal analyses will be required to establish temporal order, a necessary but not sufficient condition for causality. Nevertheless, the accompanying article makes strides toward an empirical foundation for the treatment of the whole child within the context of medical care for JIA.