Descriptive analysis of palliative sedation in a pediatric palliative care unit.

INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. RESULTS: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. CONCLUSIONS: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.

Análisis descriptivo de la sedación paliativa en una Unidad de Cuidados Paliativos Pediátricos / Descriptive analysis of palliative sedation in a pediatric palliative care unit

Introducción:Existen pocos datos referentes a la práctica de sedación paliativa en población pediátrica. El objetivo de este estudio es crear una definición estandarizada de sedación paliativa para población pediátrica y aplicarlo en una Unidad de Cuidados Paliativos Pediátricos.Material y métodos:Se realizó una revisión no sistemática de la literatura en búsqueda de la evidencia y recomendaciones existentes para la práctica de sedación en población pediátrica, tras lo cual se creó una definición de sedación paliativa basada en tres ítems: 1. Indicación 2. Consentimiento 3. Aplicación. Posteriormente se realizó una revisión retrospectiva de registros clínicos para analizar la práctica de sedación paliativa atendidos por la Unidad de Atención Integral Paliativa Pediátrica de Madrid (UAIPPM) en un periodo de cinco años (enero 2013-diciembre 2017).Resultados:De 163 pacientes analizados, la sedación se aplicó en 20, 17 pacientes de la propia Unidad (70% varones; mediana de edad: 11,9 años); 12 pacientes padecían cáncer, siete enfermedades neurológicas y uno un síndrome polimalformativo; 52,9% pacientes sufrían más de un síntoma en el momento de indicar la sedación paliativa, siendo el dolor (64,7%) y la disnea (58,8%) los más frecuentes. En cuanto a la definición, sólo tres pacientes consiguieron una cumplimentación global de la misma, siendo el registro del consentimiento informado el área con mayor potencial de mejora.Conclusiones:La evaluación basada en una definición estandarizada permitió definir la práctica de sedación paliativa en nuestra Unidad y encontrar áreas potenciales de mejora. (AU)

Introduction:Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation.Material and methods:A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed.Results:Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement.Conclusions:The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients. (AU)

Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care.

Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of life in children and families. Method: A descriptive pre-post educational intervention study was carried out. The creation of a training program (with the term "school" used to denote this effort) strives to prepare caretakers to master the skills as well as provide support for the care of children with serious conditions requiring palliative through home-based initiatives. The analysis includes aspects of learning and satisfaction with the activity in a final sample of 14 families who had one child enrolled into a home-based palliative care program. Results: After the educational intervention in our school, the mean score of the theoretical evaluation was 9.14 points (SD 0.96), showing improvement with respect to the initial assessment, (mean diff. of +0.98 points). Although the analysis of all conceptual areas demonstrates a trend towards a positive impact of the intervention, feeding-related instruction saw the highest level of improvement, with a mean difference of +1.43 points. All enrolled parents expressed having a very positive experience during their participation in the educational program. Conclusions: The educational program showed a positive trend in the acquisition of knowledge and skills, resulting in a positive impact on the self-perception of their abilities. This psycho-educational space allowed them to share their experience of daily care for a child with complex needs with other families, showing them that they were not alone and that they could help each other.

[Descriptive analysis of palliative sedation in a pediatric palliative care unit]. / Análisis descriptivo de la sedación paliativa en una Unidad de Cuidados Paliativos Pediátricos.

INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. RESULTS: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. CONCLUSIONS: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.

Influencia de los recursos especializados en cuidados paliativos pediátricos en los pediatras de Atención Primaria / Influence that specialized units of pediatric palliative care have on Primary Care pediatricians

Introducción: el papel de los pediatras de Atención Primaria en el cuidado de niños con necesidades paliativas es fundamental. El objetivo del estudio es conocer la influencia que las unidades específicas de cuidados paliativos pediátricos tienen en la asistencia de los niños subsidiarios de los mismos por sus pediatras de Atención Primaria. Método: se realizó un estudio transversal mediante el envío de una encuesta en línea a los pediatras de Atención Primaria del territorio español. Resultados: se registraron 202 respuestas. El 68% nunca habían recibido formación específica en cuidados paliativos pediátricos. En aquellas provincias en las que existen recursos específicos de cuidado paliativos pediátricos, los profesionales de Atención Primaria muestran mayor predisposición para participar en las actividades propias de esta disciplina cuando sus pacientes lo precisen (media 4,37 frente a 3,89; p = 0,104) y han tenido más oportunidades de recibir formación sobre la materia (p = 0,007, OR: 2,18; IC 95: 1,24 a 3,84). Si hubiese una unidad de cuidados paliativos pediátricos accesible 24 horas por teléfono, el número de actividades potenciales en las que participarían es significativamente superior (p <0,001) (diferencia de medias 4,28; IC 95: 3,92 a 4,65). Conclusiones: la existencia de recursos específicos de cuidados paliativos pediátricos con disponibilidad telefónica 24 horas tiene un impacto positivo en la disposición de los pediatras de Atención Primaria para participar en el plan de tratamiento de pacientes con necesidades paliativas. Para implementar los cuidados paliativos desde este ámbito es necesario reforzar los programas formativos

Introduction: Primary Care paediatricians play an essential role in the management of children with palliative care needs. The aim of this study was to assess the impact of the availability of specialised paediatric palliative care units in the management of children eligible for palliative care by their Primary Care paediatricians. Method: cross-sectional study performed by inviting Primary Care paediatricians in Spain to complete an online questionnaire. We analysed training needs and the desire of respondents to be involved in palliative care. Results: we received202 responses. 68% of participants had never received specific training in paediatric palliative care. In provinces where paediatric palliative care resources were available, professionals expressed a greater willingness to involve themselves in palliative care activities as needed by their patients (mean 4.37 vs. 3.89, p = .104) and had more opportunities to receive training on the subject (p = .007, OR: 2.18; 95 CI: 1.24-3.84). On average, if telephonic access to a paediatric palliative care unit were available 24 hours a day, respondents would hypothetically be willing to participate in a considerably higher number of activities (p <0.001) (difference in means 4.28; 95 CI: 3.92-4.65). Conclusions: the availability of specialised paediatric palliative care services accessible by phone around the clock has a positive impact on the willingness of Primary Care paediatricians to be involved in the treatment plans of patients with palliative care needs. Training programmes need to be strengthened to promote the provision of paediatric palliative care at the Primary Care level