RESUMO
Introducción y objetivos: En los últimos años se ha objetivado un incremento de niños portadores de traqueostomía. El objetivo del estudio es describir las características de los pacientes pediátricos traqueostomizados en seguimiento por el SAPPCC de un hospital de tercer nivel.MétodosEstudio unicéntrico, observacional y retrospectivo que incluyó pacientes ≤18años portadores de traqueostomía atendidos por el SAPPCC de un hospital de tercer nivel (noviembre de 2020-junio de 2022). Se analizaron datos epidemiológicos, clínicos, microbiológicos y sociales mediante la revisión de la historia clínica.ResultadosSe incluyeron 44 pacientes traqueostomizados. La patología de base más frecuente fue la patología de vía aérea superior adquirida (20,5%), siendo la obstrucción de vía aérea superior (66%) la indicación más frecuente de traqueostomía. El 84% presentaron aislamientos bacterianos en aspirado traqueal, y Pseudomonas aeruginosa (56,8%) fue el microorganismo más frecuentemente aislado. El antibiótico sistémico más prescrito fue ciprofloxacino (84%). El 18,1% de los pacientes recibieron como mínimo una tanda de antibioterapia intravenosa y el 29,5% recibieron más de tres pautas de antibiótico sistémico en los últimos 20meses. El 59% de los niños estaban escolarizados: el 38,6% en escuela ordinaria, el 15,9% en escuela de educación especial y el 4,5% en domicilio. Se identificó familia en crisis en el 53,7% de los pacientes, y el 22,7% de las familias disponían de la prestación por cuidado de menores con enfermedad grave.ConclusionesDada la complejidad de los niños traqueostomizados, es fundamental un manejo integral y coordinado. La escolarización es posible y segura si se capacita a sus cuidadores/enfermeras escolares. (AU)
Introduction and objectives: In recent years, there has been an increase in the number of children with tracheostomies. The objective was to describe the characteristics of paediatric patients with a tracheostomy followed up by the palliative care and complex chronic patient service (PCCCPS) of a tertiary care hospital.MethodsSingle-centre retrospective observational study in patients aged less than 18years with a tracheostomy manage by the PCCCPS of a tertiary care hospital (November 2020-June 2022). We analysed epidemiological, clinical, microbiological and social data by reviewing the health records.ResultsThe sample included 44 tracheostomized patients. The most frequent underlying disease was acquired upper airway disease (20.5%). The most common indication for tracheostomy was upper airway obstruction (66%). Bacterial isolates were detected in 84% of the tracheal aspirates, among which Pseudomonas aeruginosa was most frequent (56.8%). The most frequently prescribed antibiotic was ciprofloxacin (84%). In addition, 18.1% of the patients received at least one course of intravenous antibiotherapy and 29.5% received more than three systemic antibiotic regimens in the past 20months. Fifty-nine percent of the children were schooled: 38.6% attended a regular school, 15.9% a special needs school and 4.5% were home-schooled. We identified social difficulties in 53.7%. Also, 22.7% of the families received financial support to care for a child with severe illness.ConclusionsBecause of the complexity of caring for tracheostomized children, integral and coordinated management is essential. Schooling is possible and safe if caregivers are trained. (AU)
Assuntos
Humanos , Traqueostomia , Traqueotomia , Pediatria , Infecções RespiratóriasRESUMO
BACKGROUND: Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal fragility disorders with multi-system and secondary effects, in which blistering and erosions occur in response to friction/mechanical trauma. Considering the incurable and potentially life-limiting nature of the condition and the challenges posed by its symptoms, a palliative approach to EB-related care is necessary. However, knowledge and experience related to the provision of EB palliative care is minimal. Evidence-based, best care guidelines are needed to establish a base of knowledge for practitioners to prevent or ease suffering while improving comfort at all stages of the illness, not just the end of life. METHODS: This consensus guideline (CG) was begun at the request of DEBRA International, an international organization dedicated to improvement of care, research, and dissemination of knowledge for EB patients, and represents the work of an international panel of medical experts in palliative care and EB, people living with EB, and people who provide care for individuals living with EB. Following a rigorous, evidence-based guideline development process, the author panel identified six clinical outcomes based on the results of a survey of people living with EB, carers, and medical experts in the field, as well as an exhaustive and systematic evaluation of literature. Recommendations for the best clinical provision of palliative care for people living with EB for each of the outcomes were reached through panel consensus of the available literature. RESULTS: This article presents evidence-based recommendations for the provision of palliative healthcare services that establishes a base of knowledge and practice for an interdisciplinary team approach to ease suffering and improve the quality of life for all people living with EB. Any specific differences in the provision of care between EB subtypes are noted. CONCLUSIONS: Because there is yet no cure for EB, this evidence-based CG is a means of optimizing and standardizing the IDT care needed to reduce suffering while improving comfort and overall quality of life for people living with this rare and often devastating condition.
