Shared decision making and behavioral impairment: a national study among children with special health care needs

Alexander G Fiks,James P Guevara,Evaline A Alessandrini,Chris Feudtner,Stephanie Mayne,A Russell Localio

doi:10.1186/1471-2431-12-153

Abstract

BackgroundThe Institute of Medicine has prioritized shared decision making (SDM), yet little is known about the impact of SDM over time on behavioral outcomes for children. This study examined the longitudinal association of SDM with behavioral impairment among children with special health care needs (CSHCN).MethodCSHCN aged 5-17 years in the 2002-2006 Medical Expenditure Panel Survey were followed for 2 years. The validated Columbia Impairment Scale measured impairment. SDM was measured with 7 items addressing the 4 components of SDM. The main exposures were (1) the mean level of SDM across the 2 study years and (2) the change in SDM over the 2 years. Using linear regression, we measured the association of SDM and behavioral impairment.ResultsAmong 2,454 subjects representing 10.2 million CSHCN, SDM increased among 37% of the population, decreased among 36% and remained unchanged among 27%. For CSHCN impaired at baseline, the change in SDM was significant with each 1-point increase in SDM over time associated with a 2-point decrease in impairment (95% CI: 0.5, 3.4), whereas the mean level of SDM was not associated with impairment. In contrast, among those below the impairment threshold, the mean level of SDM was significant with each one point increase in the mean level of SDM associated with a 1.1-point decrease in impairment (0.4, 1.7), but the change was not associated with impairment.ConclusionAlthough the change in SDM may be more important for children with behavioral impairment and the mean level over time for those below the impairment threshold, results suggest that both the change in SDM and the mean level may impact behavioral health for CSHCN.

Highlights

The Institute of Medicine has prioritized shared decision making (SDM), yet little is known about the impact of SDM over time on behavioral outcomes for children
For children with special health care needs (CSHCN) impaired at baseline, the change in SDM was significant with each 1-point increase in SDM over time associated with a 2-point decrease in impairment, whereas the mean level of SDM was not associated with impairment
Among those below the impairment threshold, the mean level of SDM was significant with each one point increase in the mean level of SDM associated with a 1.1-point decrease in impairment (0.4, 1.7), but the change was not associated with impairment

Summary

Introduction

SDM is useful when families must balance the risks and benefits of more than one evidence-based treatment. This process may be especially helpful in the management of behavioral problems since families choose between behavior therapies and medical treatments, often informed by strongly held personal and cultural values. Concerns such as cost, accessibility, stigma, effectiveness, and side effects have been shown to shape these decisions [5]. Beliefs that could undermine treatment acceptability, engagement and adherence may be discussed prior to the selection of therapeutic options and potentially lead to a better match between families and treatments

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Discussion

Conclusion