Chronic Respiratory Failure: Utilization of a Pediatric Specialty Integrated Care Program - Abstract
Objective: Describe utilization and family satisfaction in a specialty integrated care program for children with severe, chronic respiratory insufficiency.
Subjects: Enrollees of the Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program at Boston Children’s Hospital.
Methods: Participating families were enrolled in a program that provides scheduled and requested home visits, care coordination, and 24/7 access to physician services. Three years of program activity and clinical outcomes were recorded using an adapted version of the Care Coordination Measurement Tool© (CCMT). A subset of parents reported their utilization and satisfaction with CAPE using the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey. Patient characteristics, program activity, clinical outcomes, utilization, and satisfaction were summarized using descriptive statistics.
Results: CAPE provided care for 320 patients over the three-year period (2012-2014). Neuromuscular conditions (n=132, 41%), chronic lung disease (n=37, 12%), and congenital heart disease (n=13, 4%) represented the majority of underlying conditions. Scheduled and requested services included 905 home visits, 504 clinic visits, and 3,633 telephone or telemedicine encounters, of which 43.6% included a care coordination activity. Patients had a median of seven encounters per year. According to parent report on the CAHPS (n=102), 92.1% (n=93) of children had at least one non-urgent (i.e., routine) visit with a clinician and nearly two-thirds (64.7%, n=66) of parents reported the need for urgent or emergency care. Overall, parents were highly satisfied with CAPE services, 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).