Chronic respiratory failure: Utilization of a pediatric specialty integrated care program.

Objective: Describe utilization and satisfaction in a specialty integrated care program for children with severe, chronic respiratory insufficiency (CRI).

Subjects: Enrollees of the Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program.

Methods: Children with CRI received home visits, care coordination, and "on-demand" 24/7 access to physicians. Program activity and outcomes were recorded for 3 years using an adapted Care Coordination Measurement Tool© version. Parents completed the Consumer Assessment of Healthcare Providers and Systems (CAHPS). Patient characteristics, program activity, clinical outcomes, utilization, and satisfaction were summarized using descriptive statistics.

Results: CAPE provided care for 320 patients from 2012 to 2014 with a median of 7 encounters per year. Neuromuscular (n=132, 41%), chronic lung disease (n=37, 12%), and congenital heart disease (n=13, 4%) represented the majority of underlying conditions. Services included 905 home, 504 clinic, and 3633 telephone encounters, of which 43.6% included a care coordination activity. CAHPS (n=102) revealed that 92.1% (n=93) of children had at least one non-urgent (i.e., routine) visit and nearly two-thirds (64.7%, n=66) reported the need for urgent or emergency care. Overall, parents were highly satisfied with CAPE, with a mean satisfaction rating of 9.3 (±1.3) out of 10. Most parents reported that the CAPE team understood the child's (96.0%, n=95) and family's day-to-day life (86.9%, n=86).

Conclusions: When given open access to an intregated care program, children in our highly complex population required a median of 7 encounters per year. We believe that this experience is scalable and may inform other organizations contemplating similar services.