Introduction:

primary care (PC) paediatricians are an essential pillar in the management of children with palliative care (PPC) needs. The aim of this study was to perform a descriptive analysis of the situation of these professionals in Madrid.

Material and methods:

we conducted a cross-sectional study. Questionnaires were designed, pilot-tested and disseminated electronically using a mailing list that includes active PC paediatricians practicing in Madrid.

Results:

we obtained 199 responses to the survey. Most respondents (97%) identified the correct definition of patients with palliative care needs. Only 24.6% reported managing some of these patients in their regular practice. Respondents thought cancer patients were the largest subset of patients with palliative care needs, and almost half believed there were paediatric palliative care units (PPCUs) in hospitals that did not have one. Most respondents (70.8%) had never received specific training on palliative care. More than half did not feel integrated in palliative care teams, and no more than 35% reported interaction between the PC and PPC teams. Only 14% felt adequately trained to manage these children, while 99% expressed a desire to be involved in their management and followup.

Conclusions:

there are significant lacks and limitations for PC paediatricians as regards palliative care. Deficient training and a lack of communication between care levels were the main problems identified by respondents. Specific training programmes need to be implemented along with promotion of shared care.

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