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Open Access Research article

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

Alexander G Fiks12345*, Stephanie Mayne34, A Russell Localio6, Chris Feudtner345, Evaline A Alessandrini7 and James P Guevara1345

Author affiliations

1 The Pediatric Research Consortium (PeRC), The Children's Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA, 19104, USA

2 Center for Biomedical Informatics (CBMI), The Children's Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA, 19104, USA

3 Center for Pediatric Clinical Effectiveness, The Children's Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA, 19104, USA

4 PolicyLab, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA, 19104, Pennsylvania

5 Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, 3620 Hamilton Walk, Philadelphia, PA, 19104, USA

6 Department of Biostatistics and Epidemiology, Perelman School of Medicine at the University of Pennsylvania, 3620 Hamilton Walk, Philadelphia, PA, 19104, USA

7 The James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, 45229, USA

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Citation and License

BMC Pediatrics 2012, 12:153  doi:10.1186/1471-2431-12-153

Published: 21 September 2012

Abstract

Background

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. This study examined the longitudinal association of SDM with behavioral impairment among children with special health care needs (CSHCN).

Method

CSHCN 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.

Results

Among 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.

Conclusion

Although 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.

Keywords:
Children with Special Health Care Needs; Communication; Decision-Making