261711 National and state findings on shared decision-making for children with special health care needs: Prevalence, variations and psychometric properties

Wednesday, October 31, 2012

Christina Bethell, PhD, MBA, MPH , Department of Pediatrics, School of Medicine, The Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, OR
Bonnie B. Strickland, PhD , Maternal and Child Health Bureau/Division of Services for Children with Special Health Care Needs, Health Resources and Services Administration, Rockville, MD
Stephen J. Blumberg, PhD , National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, MD
Scott Stumbo, MA , Child and Adolescent Health Measurement Initiative, Oregon Health & Science University, Portland, OR
Cambria Wilhelm, MPH , Dept. of Pediatrics, Oregon Health & Science University, Child and Adolescent Health Measurement Initiative, Portland, OR
Background: Shared decision making (SDM) measures family-professional partnerships to provide quality care for children with special health care needs (CSHCN). We evaluate psychometric properties of a new measure of SDM, estimate prevalence and variations in SDM among CSHCN, examine associations with complexity of health needs and other measures of health status, quality and patient-provider communication.

Methods: SDM prevalence was calculated for CSHCN age 0-17 years old in the United States (n = 40,242) across a range of child subgroups. Multi-level and logistic regression models examined associations between SDM and severity of special health care needs, socioeconomic status, health insurance, and other measures of health care quality, such as medical home. Cognitive testing findings were summarized and item response and convergent/divergent validity assessments were performed.

Results: National SDM prevalence among CSHCN was 70.3%. Prevalence was highest for CSHCN with a medical home (89.9% vs. 56.3%) and adequate insurance (77.9% vs. 58.2%). CSHCN without family centered care were half as likely to report SDM (39.9% vs. 87.2%). CSHCN whose care met SDM criteria were less likely to experience difficulties getting services (26.7% vs. 51.2%). Presence of comorbid conditions and emotional/behavioral problems were also correlated with lower SDM.

Conclusions: Shared decision making is associated with positive experiences seeking care and fewer unmet needs. SDM is a nationally recognized priority, but prevalence remains low among some subgroups of CSHCN. Variations between SDM and other measures of patient-provider communication highlight complexities of measuring SDM. Psychometric findings support the validity of the SDM measure.

Learning Areas:
Chronic disease management and prevention
Conduct evaluation related to programs, research, and other areas of practice

Learning Objectives:
Participants will be able to define shared decision making (family-provider partnerships to improve care) and compare this with other measures of national significance in quality care.

Keywords: Family Involvement, Quality Improvement

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have over 20 years of experience in health services research and statistical analysis in support of developing quality improvement measures for children with special health care needs.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.