Factores asociados con la calidad de vida relacionada con la salud en niños y adolescentes con cáncer. La Habana, Cuba. 2011-2013

Abstract

OBJETIVO: Identificar factores asociados con una peor calidad de vida relacionada con la salud percibida por pacientes hospitalizados en servicios de oncopediatría de La Habana entre 2011 y 2013. MÉTODO: estudio correlacional realizado en 150 pacientes de 6-14 años de edad, atendidos en hospitales seleccionados, atendiendo a criterios de inclusión. Variable dependiente: calidad de vida relacionada con la salud (CVRS), variables independientes: edad, sexo, escolaridad, diagnóstico, motivo de ingreso, tipo de tratamiento y tiempo de evolución de la enfermedad. Se aplicó un sistema de evaluación de la calidad de vida percibida y reportada (SECVPR) desarrollado en Cuba para este tipo de paciente. Análisis estadístico: frecuencias absolutas y relativas y Regresión Logística Múltiple con respuesta dicotómica. Se solicitó consentimiento informado. RESULTADOS: El 90% de los evaluados consignaron las categorías bien y regular con discreto predominio de la segunda (48%). Las variables: edad, motivo de ingreso, tipo de tratamiento, escolaridad y tiempo de evolución se asociaron con la CVRS (p≤0,05). CONCLUSIONES: La CVRS en los pacientes estudiados es peor si el paciente ingresa por complicaciones, tiene mayor escolaridad y edad, si es tratado con quimioterapia y si el tiempo de evolución es de un año o más.

Oncopediatric palliative care

“…The recognition of the rights of pediatric patients and their comprehensive care under a bioethical approach becomes a great challenge for health professionals: due to the very characteristics imposed by the ontogenetic development of children and its main psychological determinants, (the pediatric patient is in a process of growth and development that definitely affects their understanding of the disease, life and death); due to the still prevailing paternalistic biomedical model, due to the great impact that care work can generate with these children and adolescents, as well as the deficit in their curricular training in such important aspects as the communication of bad news, attention to pain, suffering, mourning, death, hope, family surrender crises, the conspiracy of silence, and coping with the different bioethical dilemmas that they have to face in their professional practice. It is a reality that issues such as euthanasia, dysthanasia, orthothanasia, assisted suicide, therapeutic effort limit, palliative care, pain and suffering, are the order of the day when we talk about care for children and adolescents with cancer, which is why it is required of an axiological line that helps us in the process of humanization of Medicine and of life [48].…”

“…It is not ethical, nor human, to be treated by a professional who is affected by the so-called Burnout Syndrome (depersonalization, emotional exhaustion and lack of personal fulfillment); neither is working in those conditions were not only the health of the worker is affected, but also the health of the family. This was studied in these caregivers, also as part of the "Quality of life in Oncopediatrics" Project [71]. Different investigations support the need to pay attention to this syndrome [72].…”