• 作者：M.L. Calleja Gero^a ; ^{lourdes_calleja@hotmail.com} ; M. Rus Palacios^b ; R. Martino Alba^b ; M. Monleó ; n Luque^b ; D. Conejo Moreno^a ; M.L. Ruiz-Falcó ; Rojas^a
• 关键词：Cuestionario ; Cuidados paliativos pediá ; tricos ; Formació ; n ; Grado de implicació ; n ; Neuropediatras ; Recursos paliativos
• 刊名：Neurolog篓陋a
• 出版年：2012
• 期刊代码：pca262_02134853
• 类别：med
• 出版时间：June, 2012
• 卷：27
• 期：5
• 页码：277-283
• 文件大小：364 K

Introduction

Up to 70%of children currently treated by Palliative Care Units in Europe are neurological patients. Our objective is to assess the knowledge, interest and involvement in Paediatric Palliative Care (PPC) among Spanish paediatric neurologists.

Material and methods

We contacted 297 Neuropaediatricians by and attached a 10-question multiple choice test. This questionnaire was related to the level of knowledge of PPC, identification of patients requiring this specific care, involvement of a paediatric neurologist, use of local palliative resources, and formal training in this subject.

Results

Participation rate was 32%(96/297). Around 90%knew the definition of PPC, could identify patients with a short-term survival prognosis, and had treated children who eventually died due to their illnesses. A 鈥渘on resuscitation order鈥?had been written by 61%of them at least once; 77%considered the patient虂s home as the preferred location of death (if receiving appropriate care), 9%preferred the hospital, and 14%had no preference for any of these options. Just over half (52%) had contacted local PC resources, and 61%had referred or would refer patients to be seen periodically by both services (PC and Paediatric Neurology). More than half (55%) consider themselves not trained enough to deal with these children, and 80%would like to increase their knowledge about PPC.

Conclusion

The paediatric neurologists surveyed frequently deal with children who suffer from incurable diseases. Their level of involvement with these patients is high. However, there is an overwhelming necessity and desire to receive more training to support these children and their families.