Objectives: To assess primary care pediatric providers' comfort with co-managing patients with rare conditions.
Methods: A survey was sent via an electronic link to pediatricians and family practitioners. Chi-square test of significance and Fisher's exact test were used for categorical variable comparisons and the Student's t test was used for continuous variable comparisons.
Results: Most of the providers believed that care decisions are most frequently made by the specialist with consultation with the primary care clinician. The most common source of information is direct communication from the specialist. The most effective tool to increase clarity and comfort about provider roles was an active care plan identifying current care needs, who will act on the plan, and when the action should be completed.
Conclusions: Coordinated co-management in which caregiving roles are explicitly defined and tools are available for the timely exchange of information among all key participants warrants further study.
Keywords: care coordination; children with special health care needs; medical home; newborn screening.