OBJECTIVES:

To compare parents of children with special health care needs (CSHCN) with other parents to determine parents' expectations and priorities for discussing concerns related to a child's acute or chronic illness at well-child care visits, the association of unmet expectations and priorities with satisfaction, and whether discussing illness displaces prevention topics.

DESIGN:

Written, self-administered survey of parents at well-child care visits.

SETTING:

Two community-based pediatric practices in suburban southeast Michigan.

PARTICIPANTS:

Five hundred parents with children aged 6 months to 12 years.

MAIN EXPOSURE:

Having a special health care need.

MAIN OUTCOME MEASURES:

Expectations and priorities for discussing illness-related topics (chronic and acute illnesses, medications, specialist referrals, and effects of health on life overall), actual discussion regarding illness and preventive topics, and satisfaction.

RESULTS:

Compared with parents of children without chronic conditions, parents of CSHCN were more likely to expect to discuss their child's illness (81% vs 92%, respectively; P < .001); 79% of parents of CSHCN ranked illness among their top 3 priorities (vs 53% of other parents [P < .001]). Parents of CSHCN reported discussing a mean of 3.2 illness topics, as compared with a mean of 2.2 illness topics for other parents (P < .001). Having more than 1 unmet expectation for discussing illness was associated with higher odds of lower satisfaction (for parents of CSHCN: odds ratio, 7.2; 95% confidence interval, 2.9-18.3; for other parents: odds ratio, 3.0; 95% confidence interval, 1.7-5.5). Discussing more illness topics was associated with discussing more preventive topics (P < .001).

CONCLUSIONS:

Discussing illness is frequently expected and highly prioritized at well-child care visits, particularly for parents of CSHCN. Unmet expectations are associated with lower satisfaction. Incorporating illness concerns at well-child care visits may improve chronic disease management.