Atención integral y continuada a jóvenes con retinosis pigmentaria / Complete and continuous care to young people with retinosis pigmentary

RESUMEN

Introducción: la juventud comprende entre 20-24 años, socialmente incluye hasta los 35. En este período comienzan o se acentúan enfermedades crónicas e incurables como la retinosis pigmentaria.Objetivo: exponer los resultados de la atención integral y continuada a jóvenes con retinosis pigmentaria. Material y Métodos: investigación observacional y prospectiva sobre la aplicación de un modelo de medicina integradora en el Centro de Referencia Nacional de Retinosis Pigmentaria entre 2000-2013. Se estudiaron 31 jóvenes de ambos sexos, entre 19-34 años participaron en las diferentes acciones de un programa de atención integral e intervención educativa con un enfoque biopsicosocial, mediante interconsultas, entrevistas individuales y parentales y actividades grupales semestrales para incrementar su satisfacción personal y hacer posible su integración social. Resultados: 21 jóvenes (67,7 por ciento) en etapa intermedia y avanzada de la enfermedad presentan baja visión, 51,6 por ciento alcanzaron nivel universitario, 93,5 por ciento tienen inserción socio-laboral activa e independiente y 32,2 por ciento sufrieron repercusión psicológica. 91.9 por ciento apoya el modelo integral e interdisciplinario. Conclusiones: la atención integral y continuada con enfoque psicosocial y la intervención educativa y orientadora personalizada estimuló el desarrollo de habilidades y modos de vida saludables y facilitó una relación equipo multidisciplinario-paciente-familia que complementa la terapéutica médica para lograr calidad de vida(AU)

ABSTRACT

Introduction: youth is the period of life between the 20 and 24 years of age, but it goes up to the 35 years of age socially. This period can also mark the onset or the progression of an incurable, chronic eye disease such a Retinitis pigmentary. Objective: to present the outcome of comprehensive, continuous care of young people suffering Retinitis pigmentary.Material and Methods: observational and prospective investigation on the application of a model of integrative medicine in the Retinitis Pigmentary Reference National Center among 2000 to 2013. Thirty-one young people, both sexes, between the ages of 19 years old and 34 years old were studied. They have taken part in the activities of a program of comprehensive care and educational intervention using a biological-psychological-social approach. By means of inter-consultations, individual and parental interviews and group activities carried out every six months to increase the effectiveness of their social insertion and personal success. Results: 21 youths (67, 7 percent) in intermediate and advanced stage of the illness they arrived to the low vision, 51.6 percent of the youth studied reached university level, 93.5 percent has an active job and 32.2 percent present psychological impact of the ailment. 91, 9 percent of the patients and their families support this comprehensive-interdisciplinary strategy.Conclusions: the comprehensive and interdisciplinary continuous care, an educational intervention and personalized counseling encourage young people to completely develop their abilities and a healthy lifestyle. It also makes easier to consolidate a sound relationship among the multidisciplinary team, the patient and the family who complements the clinical therapy for improving the quality of life(AU)