ABSTRACT
OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objective is to describe the characteristics of cancer patients and healthcare delivered by a pediatric palliative care unit with a home hospitalization program. METHODS: Retrospective study based on clinical records of deceased patients attended by the pediatric palliative care unit of Madrid over 10 years. Data collected included general characteristics, type of cancer, whether they received home assistance, place of death, healthcare delivered (hospitalizations, devices, oncological treatments ), and symptom prevalence. RESULTS: After excluding 47 patients, the clinical records of 144 patients were analyzed. The median age at referral was 9.4 years (IQR: 5.6-14.1), 61.2% were males; 44.2% had solid non-CNS tumors, 35.4% CNS tumors, and 20.4% hematological malignancies; 137 received home care with 89 not requiring further hospital admissions and 70.1% dying at home. The median follow-up time was 1.6 months (IQR: 0.5-2.9). The most used devices were venous ports (71.4%) and oxygen (49.4%); 53.5% of the patients received oncological support therapies. The most common symptoms were pain (91.8%) dyspnea (49.0%) and fatigue (46.9%). CONCLUSIONS: Home assistance was provided in a high number of patients, with a large proportion needing one or no hospital admissions and 70.1% of them dying at home. Further studies characterizing these patients and the factors which promote early access to palliative care are needed.
Subject(s)
Home Care Services , Hospice and Palliative Care Nursing , Neoplasms , Terminal Care , Child , Delivery of Health Care , Hospitalization , Humans , Male , Neoplasms/epidemiology , Neoplasms/therapy , Palliative Care , Retrospective StudiesABSTRACT
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)
Subject(s)
Humans , Child , Adolescent , Palliative Care , Pediatrics , Child Health Services , 28599 , Retrospective StudiesABSTRACT
No disponible
Subject(s)
Humans , Child , Child Mortality/trends , Palliative Care/statistics & numerical data , Palliative Care/trends , SpainABSTRACT
INTRODUCCIÓN: Los pacientes en seguimiento por unidades de cuidados paliativos pediátricos (UCPP) pueden ingresar en el hospital por distintas circunstancias. Cuentan con características dispares en sus necesidades y en las situaciones clínicas que presentan. El objetivo de este estudio es presentar datos correspondientes a los pacientes ingresados a cargo de la UCPP de la Comunidad Autónoma de Madrid. MÉTODOS: Estudio retrospectivo observacional realizado a partir de las historias clínicas de la UCPP. Periodo: enero-2011 a diciembre-2016. RESULTADOS: De los 499 pacientes seguidos en ese periodo, 166 (33%) ingresaron en alguna ocasión, generando un total de 314 episodios. El principal motivo de ingreso fueron los problemas respiratorios (34%). El motivo más frecuente de ingreso para intervención quirúrgica fue la realización de una gastrostomía (23 pacientes). En este periodo, 46 pacientes fallecieron durante el ingreso, siendo el motivo más frecuente el ingreso por problemas respiratorios (18/46), seguido de los ingresos por agonía (11/46). El 59% de los ingresos duró menos de 7 días y el 88%, 15 días o menos. CONCLUSIONES: Los motivos y las características de los ingresos hospitalarios a cargo de una UCPP son heterogéneos, siendo los motivos más frecuentes los problemas respiratorios. La duración de la estancia hospitalaria es equiparable a la de unidades de cuidados paliativos de atención aguda. La creación de unidades específicas con posibilidad de ingreso hospitalario a cargo de las mismas puede ayudar a mantener la continuidad asistencial
INTRODUCTION: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the PPCU of the Autonomous Community of Madrid. METHODS: Descriptive retrospective study was conducted by reviewing the clinical records of the PPCU between January 2011 and December 2016. RESULTS: Of 499 patients attended in this period, 166 (33%) were admitted to hospital at some point, generating a total of 314 episodes. Respiratory problems (34%) were the main cause of admission. Gastrostomy intervention (23 patients) was the commonest reason for a surgical admission. In this period, 46 patients died during hospitalisation. The highest frequencies of death, according to the admission cause, were respiratory problems (18 out 46) and end-of-life care (11 out 46). More than half (59%) of admissions lasted less than 7 days and 88% were 15 days or less. CONCLUSIONS: The causes and characteristics of the hospital admissions at a PPCU are heterogeneous, with respiratory problems being the most common cause of admission. The duration of the hospitalisation appears to be similar to that described for acute palliative care units. The creation of a specific PPCU that can refer their patients for hospital admission might help to improve continuity of care
Subject(s)
Humans , Male , Female , Infant, Newborn , Infant , Child, Preschool , Child , Adolescent , Hospitalization/statistics & numerical data , Palliative Care/statistics & numerical data , Terminal Care/statistics & numerical data , Length of Stay , Retrospective StudiesABSTRACT
No disponible