A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs.

OBJECTIVE: To evaluate the impact of a tertiary care center special needs program that partners with families and primary care physicians to ensure seamless inpatient and outpatient care and assist in providing medical homes. DESIGN: Up to 3 years of preenrollment and postenrollment data were compared for patients in the special needs program from July 1, 2002, through June 30, 2005. SETTING: A tertiary care center pediatric hospital and medical school serving urban and rural patients. PARTICIPANTS: A total of 227 of 230 medically complex and fragile children and youth with special needs who had a wide range of chronic disorders and were enrolled in the special needs program. INTERVENTIONS: Care coordination provided by a special needs program pediatric nurse case manager with or without a special needs program physician. MAIN OUTCOME MEASURES: Preenrollment and postenrollment tertiary care center resource utilization, charges, and payments. RESULTS: A statistically significant decrease was found in the number of hospitalizations, number of hospital days, and tertiary care center charges and payments, and an increase was found in the use of outpatient services. Aggregate data revealed a decrease in hospital days from 7926 to 3831, an increase in clinic visits from 3150 to 5420, and a decrease in tertiary care center payments of $10.7 million. The special needs program budget for fiscal year 2005 had a deficit of $400,000. CONCLUSION: This tertiary care-primary care partnership model improved health care and reduced costs with relatively modest institutional support.

Impact of caring for children with medical complexity and high resource use on family quality of life.

PURPOSE: This study examined the impact of caring for children with medical complexity (CMC) and high resource use on family quality of life (QoL). METHODS: Families of CMC enrolled in a complex care program completed the PedsQL Family Impact module (PedsQL FIM) and Healthcare Satisfaction module (PedsQL HCS) at enrollment then 1 and 2 years after enrollment. Tertiary center resource utilization and staff care coordination time were collected for the two years. RESULTS: PedsQL FIM scores were low at enrollment and did not improve over time. Social Functioning, Worry, and Daily Activities were the lowest domains. PedsQL HCS scores were higher at enrollment, but also failed to improve over the two years. Changes in resource use were not associated with changes in PedsQL FIM or HCS scores. Staff care coordination time was highest for patients with ≥ 10 hospital days per year. CONCLUSION: CMC families' low QoL did not appear to be related to healthcare satisfaction or a shift from inpatient to outpatient resource use. Less staff support for families of CMC who spent more time at home may have contributed to their continued low QoL. Further study is required to identify causes of and strategies for improving the low QoL of families of CMC.

Genesis of a professional development tool for ambulatory pediatric nursing practice.

The purpose of this project was to develop a system that would allow ambulatory pediatric nurses to describe their practice and to develop in their role as nurses. Patricia Benner's novice to expert philosophy has been used to describe the practice of nurses in many specialties; however, it has not been applied to ambulatory pediatric practice. A group of nurses at Children's Hospital of Wisconsin used Benner's philosophy to generate behaviors that evolved from the novice to the expert within the domains of nursing practice outlined in the ambulatory nurse job description. This tool has been implemented as part of the performance review process and is given to new nurses on orientation as a framework for nurses' professional development.