ABSTRACT
INTRODUCTION: In France, 26 regional pediatric palliative care teams (ERRSPP) were created between 2008 and 2012. We conducted the first prospective French study to describe the main specifications of the initial contact with an ERRSPP and to analyze the responses given. DESIGN AND METHODS: All the requests for interventions on the part of the ERRSPP were collected between September 2013 and September 2014. We prospectively completed a questionnaire on the patient's clinical and demographic data (age, sex, disease), details regarding the request (type of applicant, unit's specialty, request pattern), and the answers provided (interval between diagnosis and request, duration of care by ERRSPP, death, changes compared to the initial request). The diseases were classified within one of the six groups of palliative pediatric care diseases, based on the standards of the Canadian palliative care association. RESULTS: We gathered 67 requests, 61 relating to patients. The median age at the request was 49.8 months (range: 2.3-145). The original pattern was multiple: multidisciplinary decision-making (42 %), coordination of care (34 %), symptom management (21 %), logistic support for home care (19 %), education (9 %) and case discussion (6 %). Requests concerning multidisciplinary decision-making were predominant within the neonatal period (61 %); coordination of care was significant for children and adolescents (78 % after 4 years of age). The study of the median time from diagnosis to request compared to the groups of diseases revealed a short time in group 5 (neonatology: 0.36 months) and a long time in group 4 (irreversible and nonscalable diseases: 54.6 months) (P<0.001). At the end of the study, the follow-up of 50.8 % of the patients by ERRSPP was still going on (median duration of care by the ERRSPP of Languedoc-Roussillon region [ERRSPP-LR], 3.4 months [range: 0.2-5.5]). No request was formulated by a general practitioner. CONCLUSION: This study shows the heterogeneity of the initial contact made with an ERRSPP, confirming its different assignments and the need for a multidisciplinary team. The ERRSPP's answer was expanded in half of the cases, attesting to the changing needs over time.
