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[First requests for a regional pediatric palliative care team: A prospective and observational study]
Insights
This study analyzed initial contacts with French pediatric palliative care teams (ERRSPP), revealing diverse care needs. Findings highlight the ERRSPP
Area of Science:
- Pediatric Palliative Care
- Healthcare Services Research
Background:
- France established 26 regional pediatric palliative care teams (ERRSPP) between 2008 and 2012.
- This study is the first prospective French investigation into ERRSPP initial contact specifications and responses.
Purpose of the Study:
- To describe the characteristics of initial referrals to ERRSPPs.
- To analyze the interventions and responses provided by ERRSPPs.
Main Methods:
- Prospective data collection on 67 requests (61 patients) between September 2013 and September 2014.
- Questionnaires captured patient demographics, disease classification, request details (applicant, specialty, pattern), and response data (time to request, care duration, outcomes).
- Diseases were categorized using Canadian palliative care association standards.
Main Results:
- Referral patterns varied, including multidisciplinary decision-making (42%), care coordination (34%), and symptom management (21%).
- Referral reasons differed by age group: neonates predominantly required decision-making (61%), while older children/adolescents needed care coordination (78%).
- Time from diagnosis to referral varied significantly by disease group (e.g., neonatology: 0.36 months vs. irreversible diseases: 54.6 months).
Conclusions:
- Initial contacts with ERRSPPs are heterogeneous, reflecting diverse team functions and the necessity of multidisciplinary approaches.
- ERRSPP interventions were expanded in 50% of cases, indicating evolving patient needs and the dynamic nature of palliative care.
- No requests originated from general practitioners, suggesting a potential gap in primary care involvement.
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.