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Healthc (Amst). 2017 Mar;5(1-2):23-28. doi: 10.1016/j.hjdsi.2016.04.002. Epub 2016 May 11.

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

Author information

1
Boston Children's Hospital, Department of Anesthesiology, Perioperative and Pain Medicine, Division of Critical Care, United States; Harvard Medical School, United States. Electronic address: Robert.Graham@childrens.harvard.edu.
2
Boston Children's Hospital, Department of Anesthesiology, Perioperative and Pain Medicine, Division of Critical Care, United States; Harvard Medical School, United States.
3
Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, United States; Tufts University School of Medicine, United States.
4
Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, United States.

Abstract

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.

KEYWORDS:

Chronic disease management; Disabilities; Family; Health resources; Healthcare satisfaction; Medical home; Respiratory insufficiency

PMID:
28668199
DOI:
10.1016/j.hjdsi.2016.04.002
[Indexed for MEDLINE]

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