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.