Implementation of programmes for the transition of adolescents to adult care.

Up to 15-20% of adolescents have a chronic health problem. Adolescence is a period of particular risk for the development or progression of chronic diseases for both individuals with more prevalent conditions and those affected by rare diseases. The transition from paediatric to adult care begins with preparing and training the paediatric patient, accustomed to supervised care, to assume responsibility for their self-care in an adult care setting. The transition takes place when the young person is transferred to adult care and discharged from paediatric care services. It is only complete when the youth is integrated and functioning competently within the adult care system. Adult care providers play a crucial role in welcoming and integrating young adults. A care transition programme can involve transitions of varying complexity, ranging from those required for common and known diseases such as asthma, whose management is more straightforward, to rare complex disorders requiring highly specialized personnel. The transition requires teamwork with the participation of numerous professionals: paediatricians and adult care physicians, nurses, clinical psychologists, health social workers, the pharmacy team and administrative staff. It is essential to involve adolescents in decision-making and for parents to let them take over gradually. A well-structured transition programme can improve health outcomes, patient experience, the use of health care resources and health care costs.

Adaptación transcultural al español de un cuestionario específico de calidad de vida en pacientes con traqueostomía / Transcultural adaptation to spanish of a specific questionnaire of quality of life in patients with tracheostomy

ntroducción: La traqueostomía es uno de los procedimientos quirúrgicos realizados con mayor frecuencia en el mundo. En Europa, a entre el 1.3 % y el 10 % de los pacientes hospitalizados en Unidades de Críticos se les realiza una traqueostomía. La traqueostomía provoca cambios físicos, funcionales, psicológicos, sociales, económicos y laborales en la vida del individuo que afectan a su calidad de vida. Siendo el cuestionario Tracheostomy Specific Quality Of Life (TQOL) una herramienta válida y fiable para su medición.Objetivo: Adaptar a la cultura y al idioma español un cuestionario específico para evaluar la calidad de vida de los pacientes con traqueostomía y medir su validez de contenido.Método: Se realizó una adaptación transcultural del inglés al español mediante el proceso de traducción-retrotraducción del cuestionario, seguido por una comprobación de la validez de contenido mediante un panel de expertos.Resultados: Los ítems del TQOL no presentaron problemas de traducción, se introdujeron cambios semánticos siendo la retrotraducción equivalente al original. Todos los ítems obtuvieron un índice de validez de contenido superior a 0,80, siendo el índice global de validez de contenido de la escala (S-CVI) de 0,98. El estudio piloto mostró adecuada comprensibilidad del instrumento.Conclusiones: Se ha obtenido una versión adaptada al español del TQOL lingüísticamente equivalente al cuestionario original para evaluar la calidad de vida en pacientes con traqueostomía. (AU)

Introduction: Tracheostomy is one of the most frequently performed surgical procedures in the world. In Europe, between 1.3% and 10% of patients hospitalized in Critical Units undergo a tracheostomy. The tracheostomy causes physical, functional, psychological, social, economic and work changes in the life of the individual that affect her quality of life. The Tracheostomy Specific Quality Of Life (TQOL) questionnaire is a valid and reliable tool for its measurement. Objective: To adapt to the Spanish culture and language a specific questionnaire to evaluate the quality of life of patients with tracheostomy and to measure its content validity. Method: A cross-cultural adaptation from English to Spanish was carried out by means of the translation-back-translation process of the questionnaire followed by a content validity check by a panel of experts.Results: The TQOL items did not present translation problems, semantic changes were introduced, the back translation being equivalent to the original. All items obtained a content validity index greater than 0.80, with the scale’s global content validity index (S-CVI) of 0.98. The pilot study showed adequate comprehensibility of the instrument.Conclusions: A version adapted to Spanish of the TQOL has been obtained, linguistically equivalent to the original questionnaire to evaluate the quality of life in patients with tracheostomy. (AU)