[Responses by neuropaediatricians to a palliative care questionnaire]. / Cuestionario sobre cuidados paliativos a neuropediatras.

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 "non resuscitation order" had been written by 61% of them at least once; 77% considered the patient́s 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.

[Talking about death to children with cancer]. / Hablar de la muerte al final de la vida: el niño con cáncer en fase terminal.

INTRODUCTION: Paediatric cancer treatment includes a multidisciplinary intervention in all treatment phases, and particularly in the palliative phase. One of the main skills is information. This study tries to explore the level of information that children on palliative care have about their own death. SAMPLE AND METHODS: We retrospectively collected the psychosocial variables of 45 oncology patients who died as inpatients in the Hospital Niño Jesús Hospital (HNJS) between 2006 and 2007. The concept of death is analysed according to each child development stage. RESULTS: We found a relationship between the age of the children and the information they have about their own death, as well as a statistical significance between the information that the child has and the information received from their parents. Children between 3 to 6 years old have more information about their own death than children between 7 to 11 years old. CONCLUSIONS: Our results confirmed that the older age group had more information on their imminent death. However children between 3 to 6 years old have more information than children between 7 to 11 years old. Probably as children between 3 to 6 years old have a magical concept of death, it makes it easier to talk about their terminal phase. Over-protection and the difficulty to talk about death shows differences between what children know and what parents tell them about their palliative phase.

[Attitudes and needs of pediatric intensivists in relation to the death of their patients]. / Actitudes y necesidades de los intensivistas pediátricos ante la muerte de sus pacientes.

INTRODUCTION: Most deaths in infants and children occur in hospitals and especially in pediatric and neonatal intensive care units. OBJECTIVES: To determine 1) how often pediatric intensivists have to manage dying patients, 2) their approach to these patients, and 3) their knowledge of this field and their needs. MATERIAL AND METHOD: A 28-item questionnaire was sent by surface mail to each physician, as well as another questionnaire with general questions on the work of the pediatric intensive care unit (PICU) in 2000. RESULTS: Responses were obtained from 20 PICUs (54 %) from different parts of Spain. There where 373 deaths. More of the half of the deaths (62 %) were due to acute events or occurred during the neonatal period. Ninety-four physicians completed the questionnaire. Each physician attended four deaths (SD = 3.1; range 0-20). Sixty-eight percent of the physicians believed that families were helped by knowing the possibility that the child might die. Intensivists believed that pediatric patients should not be informed that they were dying. In 64 % of deaths, the physicians were with their patients at the moment of death. More than half of the patients died without physical contact with their parents. Forty-six percent of the physicians interpreted death among their patients as a personal or professional failure and most (92 %) wanted training. Only three PICUs allowed parents to stay all day with their children. CONCLUSIONS: Almost half the physicians experienced death as a personal or professional failure and most wanted training to help them deal with death in their professional work. Most PICUs restrict the time parents are allowed to stay with their children.

[Subacute sclerosing panencephalitis: a still existing disease]. / Panencefalitis esclerosante subaguda: una enfermedad que todavía existe.

Subacute sclerosing panencephalitis (SSPE) is a rare entity with an invariably fatal course that progressively affects the central nervous system. It is caused by persistent infection with the wild-type measles virus. While rare in industrial countries, it is not infrequent in developing countries, where there are still areas of endemic measles infection and immunization is not yet generalized. We describe an eight-year-old Spanish girl who presented rhythmic and symmetric myoclonus. She contracted measles at 13 months and required hospitalization. No cognitive deterioration was found. Neuroimaging and the initial electroencephalogram were normal. Oligoclonal bands and high titers of measles antibodies were found in serum and cerebrospinal fluid. She was treated with oral metisoprinol and intraventricular alpha-interferon (IFN-) and showed no further progression of her symptoms. The importance of including SSPE in the differential diagnosis of patients consulting for school failure, neurological deterioration or movement disorders is highlighted. Special attention should be paid to the immigrant population from countries where the incidence of SSPE is greater than in Spain.

[Changes in the epidemiology of the acute respiratory distress syndrome (ARDS) in children]. / Cambios en la epidemiología del síndrome de dificultad respiratoria aguda (SDRA) en niños.

OBJECTIVE: Our aim was to analyze, in a retrospective study, changes in acute respiratory distress syndrome (ARDS) within the same pediatric intensive care unit by using the same diagnostic criteria as published in 1982. PATIENTS AND METHODS: Fifteen patients (mean age 5.1 years, range 16 days-15 years) admitted between 1988 and 1994 fulfilling our former criteria for ARDS were included in the study. RESULTS: The incidence of ARDS after the age of 7 days was 0.45% of all admissions between the age of 1 week and 16 years vs 1.79% in the former series of patients (p < 0.001). Thus, the yearly rate of ARDS decreased from 5.7 to 2.1 cases per year. Six patients suffered a chronic underlying disease vs none in 1982 (p < 0.01). Triggering of ARDS by infection/inflammation was present in 14/15 patients vs 7/20 in the first series (p < 0.001). Except for the nadir PaO2/FiO2 ratio (54 mmHg vs 97 mmHg, p < 0.01), and duration of FiO2 > or = 0.5 (204 h vs 39 h, p < 0.01) there was no statistically significant difference with regard to respiratory data. Incidence of multiple organ/system failure and numbers of failing organs/systems remained unchanged. Eight of 15 patients died in the actual series vs 8/20 in 1982 (not significant). CONCLUSIONS: Compared to our former data, the incidence of ARDS has decreased. Although the number of patients with severe chronic disease has increased, mortality remains statistically unchanged. Infection/inflammation is currently the predominant event triggering ARDS. Judging by the PaO2/FiO2 ratio and duration of FiO2 > or = 0.5, pulmonary involvement is more severe. The number of failing organs/systems remains nearly twice as frequent in non-survivors compared to survivors.