Lin Li1, Anna Polanski2, Audrey Lim3, Patricia H Strachan4. 1. School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada; McMaster Children's Hospital, 1200 Main Street West, Hamilton, ON L8N 3Z5, Canada. Electronic address: lil73@mcmaster.ca. 2. School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada; The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada. Electronic address: polanska@mcmaster.ca. 3. McMaster Children's Hospital, 1200 Main Street West, Hamilton, ON L8N 3Z5, Canada; Department of Pediatrics, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada. Electronic address: limau@mcmaster.ca. 4. School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada. Electronic address: strachan@mcmaster.ca.
Abstract
BACKGROUND: Technological advances have led to more youth with medical complexity (YMC) who are living into adulthood and being transferred from pediatric to adult care. The transition to adult care is a complex and challenging process, partly due to differences in how pediatric and adult systems deliver health care. YMC and their families need support from their health care providers to ease this transition. To identify how to better support transitioning YMC, a needs assessment was conducted to examine the current state of transitional support for youth and families cared for by a pediatric Complex Care Program. AIMS: The aims of this needs assessment were to understand the transition practices of pediatric Complex Care Programs, explore transition-related needs of YMC and their families, and identify priorities for future quality improvement. METHODS: This project involved three components: a literature review, a benchmarking survey of pediatric Complex Care Programs in Ontario, and key informant interviews. FINDINGS: The benchmarking survey identified transition planning and transfer of care as areas of strength in the Complex Care Program, while transition readiness and transfer completion provided opportunities for improvement. Stakeholder collaboration, an early start, and knowledgeable providers facilitated a successful transition. Barriers included lack of time, poor access to adult services and resources, higher medical complexity, and inadequate support for adult health care providers. CONCLUSIONS: Recommendations for improving transitional care for YMC are provided, along with resources, tools, and considerations for implementation.
BACKGROUND: Technological advances have led to more youth with medical complexity (YMC) who are living into adulthood and being transferred from pediatric to adult care. The transition to adult care is a complex and challenging process, partly due to differences in how pediatric and adult systems deliver health care. YMC and their families need support from their health care providers to ease this transition. To identify how to better support transitioning YMC, a needs assessment was conducted to examine the current state of transitional support for youth and families cared for by a pediatric Complex Care Program. AIMS: The aims of this needs assessment were to understand the transition practices of pediatric Complex Care Programs, explore transition-related needs of YMC and their families, and identify priorities for future quality improvement. METHODS: This project involved three components: a literature review, a benchmarking survey of pediatric Complex Care Programs in Ontario, and key informant interviews. FINDINGS: The benchmarking survey identified transition planning and transfer of care as areas of strength in the Complex Care Program, while transition readiness and transfer completion provided opportunities for improvement. Stakeholder collaboration, an early start, and knowledgeable providers facilitated a successful transition. Barriers included lack of time, poor access to adult services and resources, higher medical complexity, and inadequate support for adult health care providers. CONCLUSIONS: Recommendations for improving transitional care for YMC are provided, along with resources, tools, and considerations for implementation.