Soins palliatifs et médecine

Abstrait

Pediatric Palliative Care: Identification of the Referral Process and Collaboration of the Pediatric Palliative Care Team and the Primary Care Provider

Donna Marvicsin*, Carissa Bonner and Lisa Jean

Purpose: The Pediatric Palliative Care Research Network (PPCRN) is a network of pediatric palliative care hospital programs in the United States and Canada. The objectives of this study were 1.) To determine the referral process to Pediatric Palliative Care (PPC) programs identified in the United States and Canada and 2.) To identify the role of the primary care provider collaboration within the PPCRN. This information was then used to develop a patient education tool for the pediatric primary care provider within the community. The tool could initiate an early referral to PPC, increase access to these services, and improve the quality of life for these children and their families.
Methods: Surveys were sent via email to the 9 PPCRN programs to evaluate the referral processes and the role of the primary care provider within their respective PPC programs.
Results: 5 out of the 9 PPCRN programs responded to the survey. Only 2 PPCRN programs identified collaboration with the primary care provider at initial referral and offered a continued multidisciplinary approach throughout the course of the child’s illness. The majority of referrals occur at end-of-life and/or non-curative stage of disease.
Conclusion: Further research needs to be conducted to recognize the barriers of referral at diagnosis despite current guidelines. The possibility of a flagging system for diagnosis criteria should be explored in order to increase identification of children in need of PPC for referral.