Introduction. The transition of adolescents with chronic conditions to adult follow-up care is an increasingly complex process. Patients need to acquire knowledge and skills that ensure continuity of their care. The goal of this study was to validate the Argentinian Spanish version of the Transition Readiness Assessment Questionnaire (TRAQ) 5.0 tool in adolescents and young adults with chronic conditions. Population and methods. Descriptive, crosssectional, quantitative study. Patients with chronic conditions aged 14 years or older treated at Hospital Garrahan were included. The TRAQ is made up of 20 items divided into 5 subscales (Managing Medication, Appointment Keeping, Tracking Health Issues, Talking with Providers, Managing Daily Activities), and is designed to be self-administered. Patients completed the TRAQ, as well as an opinion survey about its use and a self-perceived autonomy scale; their physicians answered a scale about patients' health impairment due to the condition. Sociodemographic, clinical and TRAQ-related variables were recorded. Results. A total of 191 patients participated. The majority of patients (96.3%) understood the TRAQ 5.0 questionnaire and completed it correctly, in self-administered modality, in a short time (median: 5 minutes), with little or no help (81%). Patients who live in poverty or have a lower education level than the one expected for their age needed more help. Internal consistency (Cronbach's alpha) for the overall score was 0.81. Construct validity was demonstrated by testing different hypotheses (all p < 0.05): discrimination by age ≥ 16 years (3.01 vs. 3.34), sex (women: 3.38 > men: 3.12) and having plans for the future (without plans: 3.01 < with plans: 3.34); correlation with self-perception scale (r= 0.49). Conclusion. The TRAQ 5.0 tool is available for use in Argentinian adolescents with chronic conditions.
Introduction:The shift of adolescents from a pediatric to an adult health care facility is a complex process. The objective of this study was to assess the transition/transfer process for adolescents with chronic diseases at Hospital Garrahan. Methods: Observational, cross-sectional, qualitative-quantitative study. Retrospective statistical data were obtained in relation to outpatient visits of patients aged 16-26; surveys and/or interviews were done with health care providers, adolescents, and family members from different follow-up programs. Results: The prevalence of care provided to individuals older than 16 years was 7.2%. Surveys were administered to 54 attending health care providers, 150 patients (16-26.7 years old) and 141 family members. In addition, 45 health care providers with management functions were interviewed. Health care providers: 39% had received training on transition. All identified barriers and facilitators among the different participants and facilities. They recognized the importance of encouraging autonomy among their patients, but only 30% of them interviewed their patients alone, and 56.6% delivered medical reports. Strategies: the median age of transfer was 18 years (13-20); 62% had a protocol; 84% had an informal agreement with another facility; joint or parallel care: 49%; only 20% implemented a transition plan. Patients and family members: 4.7% of adolescents attended visits alone, and health care providers had asked 45% about their autonomy and preparation to take care of their health. Adolescents and their parents had feelings (mostly negative) regarding the process and identified facilitation strategies, such as receiving a summary, knowing the new facility, and having trained health care providers. Conclusions: The transition process for adolescents with chronic diseases is still deficient and approaching it involves health care teams and the families. A lack of formal inter-institutional agreements was identified, although there were more informal agreements among health care providers; besides, the need to encourage chronically-ill patients' autonomy was also determined. In relation to facilitation strategies, patients and parents mainly recognized the need to have a medical summary, health care guidelines, and trust in the new provider.
Arch Argent Pediatr 2014;112(1):83-88 / 83 RESUMEN Un evento centinela es un suceso inesperado que implica la muerte, o una lesión física o psicológica grave. En este caso, el evento fue el embarazo adolescente no diagnosticado antes de la indicación de tratamientos o métodos de diagnóstico potencialmente dañinos. El equipo tratante realizó un análisis de causa-raíz en el que se identificaron las siguientes causas: a) sesgo pediátrico: no pensar en el comportamiento sexual adolescente, cuestionarios incompletos, insuficiente formación en entrevistas con adolescentes, b) factores sociales: cuestiones legales, recomendaciones ambiguas con respecto a la sexualidad, c) factores hospitalarios: ausencia de guías clínicas en el tema, d) factores del paciente: historia oculta de abuso sexual, barreras culturales, falta de confianza. Antes de realizar procedimientos potencialmente teratogénicos en pacientes adolescentes, se debería efectuar una prueba diagnóstica de embarazo, con independencia de los resultados negativos de pruebas de embarazo de ciclos menstruales previos. INTRODUCCIÓNLa pesquisa y detección de embarazo no está incorporada rutinariamente en la clínica pediátrica. Más aun, cuando a una adolescente se le diagnostica una enfermedad grave o ingresa por una emergencia en la guardia, existe en general una falta de conciencia del equipo de salud sobre la posibilidad de un embarazo.R e a l i z a r u n a c i r u g í a , u n procedimiento invasivo bajo anestesia o un procedimiento que implique radiación en una paciente con un embarazo no detectado puede tener implícito un riesgo de daño para el feto o la madre.1 El embarazo adolescente, definido como un embarazo en menores de 19 años, es una problemática de relevancia social y de salud importante en todo el mundo. Las estadísticas oficiales indican que al año casi 119 000 adolescentes se convierten en madres en la Argentina. Esto representa el 15,6% del total de los recién nacidos en todo el país.2,3 Más de la mitad de estos embarazos no son planificados. Establecer el diagnóstico de embarazo en una adolescente que va a recibir anestesia u otro tipo de procedimiento puede ser un desafío en la práctica diaria. 4 En la consulta acompañadas por sus padres, las adolescentes -por vergüenza o miedo-pueden ser reacias a admitir que podrían estar embarazadas. 5Realizar un procedimiento electivo en una adolescente con un embarazo no diagnosticado puede someter a un riesgo innecesario a la madre y al feto.
RESUMENUn adolescente con cualquier tipo de discapacidad motora tiene deseos, necesidades y sentimientos, y tiene derecho a expresarlos por los caminos que sean posibles y aceptables para él. La educación sexual brindada al grupo de adolescentes con estas discapacidades es, generalmente, inferior a la ofrecida al resto de sus pares. Estos jóvenes se encuentran inadvertidamente excluidos y ciertas discapacidades pueden dificultar establecer una relación de pareja estable. Los profesionales debieran aceptar las necesidades y preocupaciones de las personas que asisten, e incluir el tema de la sexualidad desde las primeras consultas, reafirmándola como una actividad normal, en el contexto de la variedad de problemas que presentan. Palabras clave: educación sexual, terapias sexuales, vida sexual satisfactoria, igualdad de oportunidades. SUMMARYAdolescents with different types of motor handicapping have desires, needs, and feelings, and have the right to express them in the best possible and acceptable way. Sexual education provided to young people with these handicaps is generally more limited than that offered to their normal peers. These adolescents are inadvertently excluded, and some may find difficult to establish a steady couple relationship. Health-care professionals should bear in mind the needs and worries of their handicapped patients and include the topic of sexuality in their visits from the start insisting on the fact that it is a normal activity in the context of a variety of associated problems.
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