ABSTRACT
Os pacientes oncológicos necessitam de uma assistência integral, sobretudo no que se refere à transição do cuidado em saúde entre os diferentes locais e níveis de cuidado. Este estudo tem como objetivo investigar se existem protocolos assistenciais utilizados pela equipe interprofissional sobre a transição do cuidado oncológico hospitalar para o domicílio e identificar as estratégias utilizadas no planejamento e orientações da alta hospitalar. Trata-se de um estudo descritivo de abordagem qualitativa, realizado através de Grupo Focal, com profissionais da equipe interprofissional que atuam diretamente com o cuidado oncológico, em hospital filantrópico, localizado no interior do Estado do Rio Grande do Sul. Construíram-se categorias que elencaram as principais características: Desafios na transição do cuidado para a rede de atenção primária e domiciliar e Sugestões para a mudança nas intervenções do cuidado integrado em oncologia. Constatou-se que a equipe interprofissional apresenta dificuldades na compreensão sobre a transição do cuidado e a necessidade de uma maior quantitativo de colaboradores para a qualificação da assistência.(AU)
Cancer patients need comprehensive care, especially with regard to the transition of health care between different locations and levels of care. This study aims to investigate whether there are care protocols used by the interprofessional team on the transition from hospital to home oncology care and to identify the strategies used in hospital discharge planning and guidance. This is a descriptive study with a qualitative approach, carried out through focus groups with professionals from the interprofessional team who work directly with cancer care in a philanthropic hospital located in the interior of the state of Rio Grande do Sul. Categories were constructed which listed the main characteristics: Challenges in the transition of care to the primary and home care network and Suggestions for change in integrated oncology care interventions. It was found that the interprofessional team has difficulties in understanding the transition of care and the need for a greater number of collaborators to improve care.(AU)
Los pacientes oncológicos requieren una atención integral, especialmente en lo que se refiere a la transición de la asistencia sanitaria entre diferentes lugares y niveles asistenciales. Este estudio pretende investigar si existen protocolos asistenciales utilizados por el equipo interprofesional en la transición de la atención oncológica hospitalaria a la domiciliaria e identificar las estrategias utilizadas en la planificación y guías de alta hospitalaria. Se trata de un estudio descriptivo con abordaje cualitativo, realizado a través de grupos focales con profesionales del equipo interprofesional que trabajan directamente con la atención oncológica en un hospital filantrópico localizado en el interior del estado de Rio Grande do Sul. Se construyeron categorías que enumeraron las principales características: Desafíos en la transición de la atención a la red de atención primaria y domiciliaria y Sugerencias de cambio en las intervenciones de atención oncológica integrada. Se encontró que el equipo interprofesional tiene dificultades en la comprensión de la transición de la atención y la necesidad de un mayor número de colaboradores para mejorar la atención.(AU)
Subject(s)
Patient Discharge , Continuity of Patient Care , Transition to Adult Care , Medical OncologyABSTRACT
Los avances tecnológicos y del conocimiento hicieron que un mayor número de pacientes con enfermedad crónica gastrointestinal pasen de ser atendidos por el pediatra al control por los médicos de adultos durante una de las etapas más vulnerables de la vida: la adolescencia. El Grupo de Trabajo de Transición del Comité de Gastroenterología de la Sociedad Argentina de Pediatría realizó una búsqueda de literatura exhaustiva y convocó a especialistas referentes del país, con el objeto de unificar los criterios basados en la evidencia y la experiencia. De esta manera, se proponen una serie de recomendaciones para todo el equipo de salud (pediatra, gastroenterólogo infantil, nutricionista, gastroenterólogo de adultos, psicólogo, enfermería), incluso para pacientes y familias, que faciliten el proceso de transición y optimicen el seguimiento, el control, la prevención de complicaciones y la calidad de vida de los pacientes con enfermedades crónicas gastrointestinales
Technological advances and the globalization of knowledge have led to a considerable increase in the number of patients with chronic gastrointestinal disease who transition from pediatric to adult care during one of the most vulnerable life stages: adolescence. The Transition Working Group of the Gastroenterology Committee of the Sociedad Argentina de Pediatría conducted an exhaustive literature search and summoned leading specialists in the most frequent chronic pathologies from all over the country to unify criteria based on evidence and experience. As a result, a series of recommendations are proposed for the whole health team (pediatrician, pediatric gastroenterologist, nutritionist, adult gastroenterologist, psychologist, and nurse) including patients and families, to facilitate the transition process, optimize follow-up, prevent complications, and improve the quality of life of patients with chronic gastrointestinal diseases.
Subject(s)
Humans , Adolescent , Adult , Inflammatory Bowel Diseases , Transition to Adult Care , Gastroenterology , Gastrointestinal Diseases/therapy , Quality of Life , Chronic DiseaseABSTRACT
Resumo Objetivo Analisar a qualidade da Transição do Cuidado de idosos que receberam alta do hospital para casa. Métodos Estudo observacional transversal, realizado com 156 idosos, após internação em hospital público, localizado no município de Piracicaba, estado de São Paulo. Os dados foram coletados em prontuário eletrônico do paciente e por ligações telefônicas com idosos, seus familiares e/ou cuidadores, até quatro semanas após alta hospitalar. Foram utilizados questionário com dados sociodemográficos e instrumento Care Transitions Measure, versão validada para o Brasil. Resultados A duração média da última internação foi de 8,27 dias causada, majoritariamente (72,44 %) por COVID-19 e 75% dos idosos apresentaram entre 1 e 3 comorbidades, sendo a hipertensão arterial sistêmica (57,7%) a mais frequente. A média de escore do CTM 15 - Brasil foi 68,6. O Fator 1 - Preparação para o autogerenciamento obteve o maior escore (70,5) e o Fator 4 - Plano de Cuidados, o menor (59,14). Houve correlação positiva entre os 4 fatores do Care Transitions Measure, também entre estes fatores e do número de medicamentos utilizados para tratamento dos idosos, de acordo com a Classificação Anatômica Terapêutica Química. Conclusão Evidenciou-se a qualidade da Transição do Cuidado no hospital, próxima do valor considerado satisfatório, sendo dois dos quatro fatores com pontuação maior que 70; entretanto há necessidade de adoção de estratégias para melhorar o processo de alta do hospital para casa, principalmente, no que se refere a preferências asseguradas e plano de cuidado dos idosos.
Resumen Objetivo Analizar la calidad de la transición del cuidado de adultos mayores que recibieron alta del hospital a su casa. Métodos Estudio observacional transversal, realizado con 156 adultos mayores, después de estar internados en un hospital público ubicado en el municipio de Piracicaba, estado de São Paulo. Los datos fueron recopilados de la historia clínica del paciente y mediante llamados telefónicos a los adultos mayores, sus familiares o cuidadores, hasta cuatro semanas después del alta hospitalaria. Se utilizó un cuestionario con datos sociodemográficos y el instrumento Care Transitions Measure, versión validada para Brasil. Resultados La duración promedio de la última internación fue de 8,27 días, causada principalmente por COVID-19 (72,44 %) y el 75 % de los adultos mayores presentó entre una y tres comorbilidades, con hipertensión arterial sistémica como la más frecuente (57,7 %). El promedio de puntuación del CTM 15 - Brasil fue de 68,6. El Factor 1: Preparación para la autogestión obtuvo la mayor puntuación (70,5) y el Factor 4: Plan de cuidados, el menor (59,14). Se observó correlación positiva entre los cuatro factores del Care Transitions Measure, también entre estos factores del y número de medicamentos utilizados para el tratamiento de los adultos mayores, de acuerdo con la Clasificación Anatómica Terapéutica Química. Conclusión Se evidenció la calidad de la transición del cuidado en el hospital, cercana al valor considerado satisfactorio, donde dos de los cuatro factores obtuvieron puntuación superior a 70. Sin embargo, existe la necesidad de adoptar estrategias para mejorar el proceso del alta del hospital a la casa, principalmente respecto a las preferencias aseguradas y al plan de cuidado de los adultos mayores.
Abstract Objective To analyze the quality of care transition of older adults who were discharged from hospital to home. Methods This is a cross-sectional observational study, conducted with 156 older adults after public hospital admission, located in the municipality of Piracicaba, state of São Paulo. Data were collected in patients' electronic medical records and by telephone calls with older adults, their relatives and/or caregivers, up to four weeks after hospital discharge. We used a questionnaire with sociodemographic data and the Care Transitions Measure, version validated for Brazil. Results The mean duration of the last hospitalization was 8.27 days, mostly caused (72.44%) by COVID-19 and 75% of older adults had between 1 and 3 comorbidities, with hypertension (57.7%) being the most frequent. The mean CTM-15 score was 68.6. Factor 1, Management preparation, obtained the highest score (70.5), and Factor 4, Care plan, the lowest (59.14). There was a positive correlation between the 4 factors of Care Transitions Measure, also among these factors is the number of drugs used to treat older adults, according to the Anatomical Chemical Therapeutic Classification. Conclusion We evidenced the quality of the transition of care in the hospital close to the value considered satisfactory, with two of the four factors with a score greater than 70; however, there is a need to adopt strategies to improve the discharge process from hospital to home, especially with regard to preferences imported and care plan for older adults.
Subject(s)
Humans , Aged , Continuity of Patient Care , Transitional Care , Hospital to Home Transition , Patient DischargeABSTRACT
Objetivo: Construir e validar um instrumento checklist de comunicação segura para a transição do cuidado de paciente atendido pelo serviço extra-hospitalar na unidade de emergência hospitalar. Métodos: Estudo de validação metodológica, quantitativa descritiva, utilizando-se a técnica Delphi, desenvolvido em duas etapas: elaboração do instrumento e validação de conteúdo. Para elaboração do instrumento realizaram-se buscas na literatura sobre transição do cuidado, criando um checklist composto por 34 itens. Para validação do conteúdo, o instrumento foi transformado em formulário e enviado eletronicamente. A avaliação do conteúdo foi realizada por 20 juízes enfermeiros, que atuam em emergências adulto. Os dados foram analisados a partir do Índice de Validação de Conteúdo. Resultados: O instrumento é formado por 39 itens de verificação, distribuídos em cinco domínios tendo como base o método ISBAR: (I) Identificação, (S) Situação atual, (B)Breve histórico, (A) Avaliação e (R) Recomendações. Obteve-se Índice de Validação de Conteúdo geral de 0,93 e superior a 0,8 em todos os itens, em duas rodadas Delphi. Conclusão: Considera-se o instrumento validado, trazendo uma opção para padronizar a comunicação na interface entre os cuidados pré-hospitalares e hospitalares de emergência. O instrumento possibilitará que profissionais enfermeiros realizem essa importante etapa de seu processo de trabalho de forma padronizada, simplificada e objetiva. (AU)
Objective: To build and validate a safe communication checklist instrument for the transition of care to patients assisted by the extra-hospital service in the hospital emergency unit. Methods: Methodological validation study, quantitative descriptive, using the Delphi technique, developed in two stages: instrument development and content validation. To elaborate the instrument, searches were performed in the literature on transition of care, creating a checklist consisting of 34 items. For content validation, the instrument was transformed into a form and sent electronically. Content evaluation was performed by 20 nurse judges, who work in adult emergencies. Data were analyzed using the Content Validation Index. Results: The instrument consists of 39 verification items, distributed into five domains based on the ISBAR method: (I) Identification, (S) Current situation, (B) Short history, (A) Evaluation and (R) Recommendations. An overall Content Validation Index of 0.93 and greater than 0.8 was obtained for all items in two Delphi rounds. Conclusion: The instrument is considered validated, offering an option to standardize communication at the interface between pre-hospital and emergency hospital care. The instrument will enable professional nurses to perform this important stage of their work process in a standardized, simplified and objective way. (AU)
Objetivo: Construir y validar un instrumento de checklist de comunicación segura para la transición de la atención a los pacientes atendidos por el servicio extrahospitalario en la unidad de urgencias hospitalarias. Métodos: Estudio de validación metodológica, descriptivo cuantitativo, mediante la técnica Delphi, desarrollado en dos etapas: desarrollo del instrumento y validación de contenido. Para la elaboración del instrumento se realizaron búsquedas en la literatura sobre transición asistencial, creando una lista de verificación compuesta por 34 ítems. Para la validación de contenido, el instrumento se transformó en un formulario y se envió electrónicamente. La evaluación de contenido fue realizada por 20 jueces de enfermería, que trabajan en emergencias de adultos. Los datos se analizaron mediante el índice de validación de contenido. Resultados: El instrumento consta de 39 ítems de verificación, distribuidos en cinco dominios según el método ISBAR: (I) Identificación, (S) Situación actual, (B) Breve história, (A) Evaluación y (R) Recomendaciones. Se obtuvo un índice de validación de contenido general de 0,93 y superior a 0,8 para todos los elementos en dos rondas Delphi. Conclusión: El instrumento se considera validado, ofreciendo una opción para estandarizar la comunicación en la interfaz entre la atención prehospitalaria y la atención hospitalaria de emergencia. El instrumento permitirá al enfermero profesional realizar esta importante etapa de su proceso de trabajo de manera estandarizada, simplificada y objetiva. (AU)
Subject(s)
Transition to Adult Care , Emergency Nursing , Validation Study , Checklist , Patient SafetyABSTRACT
Introducción. Es clave para la atención óptima de la salud la continuidad del cuidado al pasar de pediatría a la medicina del adulto. Objetivo. Describir la experiencia del proceso de transición de pacientes adolescentes conenfermedades crónicas desde la atención enpediatría a la atención de adultos en un hospital general. Población y métodos. Estudio de cortetransversal de pacientes entre 16 y 24 años con antecedente de trasplante hepático, trasplante renal, enfermedades endocrinas, metabólicas, reumatológicas y mielomeningocele atendidos en un hospital general universitario de tercer nivel entre 2015 y 2019, durante el proceso de transición. Se evaluaron el proceso de atención y el éxito de la transición. Se utilizó el cuestionario de evaluación de preparación para la transición (Transition Readiness Assessment QuestionnaireTRAQ, por su sigla en inglés). Resultados. Se incluyeron 372 pacientes. Las especialidades de atención más frecuentesfueron clínica de mielomeningocele, equipo de trasplante renal y de trasplante hepático. El 37 % participó del proceso de transición. La media de seguimiento por pediatría hasta el inicio de la transición fue de 9 años. La media de edad de comienzo de la transición fue 19 años y la media de edad de finalización, 21 años. La estrategia de transición más frecuente fue clínica conjunta en el 96 %. La mediana del TRAQ ordinal fue de 4; de estos, el 32 % ya había consultado a adultos. El 32,7 % cumplió con una transición exitosa. Conclusiones. La continuidad del cuidadodurante la transición es un proceso que llevó casi dos años y en más de un tercio de los pacientes se realizó en forma exitosa.
Introduction. The continuity of care from pediatrics to adult medicine is key to optimal health care. Objective. To describe the experience of the transition process of adolescent patients with chronic diseases from pediatric to adult care in a general hospital. Population and methods. Cross-sectional study of patients aged 1624 years with a history of liver transplantation, kidney transplantation, endocrine, metabolic, rheumatic diseases, and myelomeningocele seen at a tertiary care teaching general hospital between 2015 and 2019 during the transition process. The process of health care and transition success were assessed. The Transition Readiness Assessment Questionnaire (TRAQ) was used. Results. A total of 372 patients were included. The myelomeningocele clinic, the kidney transplant and the liver transplant teams were the most common specialties. Thirty-seven percent of participants were involved in the transition process. The mean duration of follow-up by pediatrics until transition initiation was 9 years. The mean age at the beginning of transition was 19 years, and the mean age at the end, 21 years. The joint clinic transition strategy was the most frequent, used in 96% of cases. The median value of the ordinal TRAQ was 4; of these, 32% had already seen adult care physicians. A successful transition was achieved by 32.7%. Conclusions. The continuity of care during transition is a process that took almost 2 years; more than one third of the patients had a successful transition.
Subject(s)
Humans , Adolescent , Young Adult , Chronic Disease/therapy , Patient Satisfaction , Transition to Adult Care , Cross-Sectional Studies , Surveys and Questionnaires , Hospitals, GeneralABSTRACT
Objetivo: descrever, com base na literatura, quais as estratégias utilizadas na transição do cuidado de usuários do hospital para a atenção primária. Método: trata-se de revisão integrativa realizada a partir de coleta de artigos publicados entre 2016 e 2020 nas bases de dados LILACS, MEDLINE, por meio da PubMed, e Sci-Verse Scopus. Foram selecionados 13 artigos que atendiam aos critérios de inclusão. Resultados: estratégias descritas na literatura, envolvem a ação multidisciplinar, com destaque para a atuação do enfermeiro. Compreendem ações de transição do cuidado, planejamento de visitas e consultas. Conclusão: são estratégias apontadas na literatura para a transição do cuidado: clínica de transição com equipe de atenção primária; cronograma estruturado para visitas domiciliares; avaliação clínica e social; clínicas de cuidado transitório; programa de coordenação do cuidado.(AU)
Objective: to describe, based on the literature, which strategies are used in the transition of care for hospital users to primary care. Method: this is an integrative review based on the compilation of articles published between 2016-and 2020 in the LILACS, MEDLINE databases, through PubMed, and Sci-Verse Scopus. Thirteen articles that met the inclusion criteria were selected. Results: strategies describer in the literature include multidisciplinary actions with emphasis on the role of nurses. They comprise care transition actions, planning of visits and consultations. Conclusion: strategies identified in the literature for the transition of care are: transition clinic with a primary care team; structured schedule for home visits; clinical and social assessment; transitional care clinics; care coordination program.(AU)
Objetivo: describir, con base en la literatura, qué estrategias se utilizan en la transición de la atención de los usuarios del hospital para la atención primaria. Método: se trata de una revisión integradora basada en la recopilación de artículos publicados entre 2016 y 2020 en las bases de datos LILACS, MEDLINE, a través de PubMed y Sci-Verse Scopus. Se seleccionaron trece artículos que cumplieron con los criterios de inclusión. Resultados: las estrategias descritas en la literatura implican una acción multidisciplinar, con énfasis en el papel de los enfermeros. Comprenden acciones de transición asistencial, planificación de visitas y consultas. Conclusión: las estrategias identificadas en la literatura para la transición de la atención son: clínica de transición con equipo de atención primaria; horario estructurado para visitas domiciliarias; evaluación clínica y social; clínicas de atención transitoria; programa de coordinación de cuidados.(AU)
Subject(s)
Primary Health Care , Continuity of Patient Care , Transition to Adult CareABSTRACT
Resumo Neste estudo investigamos como vivências de estigma do HIV se expressam entre jovens soropositivos, em transição para a clínica de adultos, no serviço de saúde, na família e nas interações afetivos-sexuais e sua relação com as desigualdades e hierarquias sociais. O estudo envolveu 31 jovens (idade mediana 21) em transição para a clínica de adultos (G1) e 12 jovens (idade mediana 30) que já fizeram essa transição (G2), ambos atendidos num serviço de saúde do Rio de Janeiro. Dentre os 43 jovens, 70% eram mulheres e 65% foi infectado por transmissão vertical. Os jovens responderam a questionários e participaram de grupos focais sobre estigma da aids e passagem para a vida adulta. A maioria relatou situações de discriminação associadas ao estigma do HIV na vida cotidiana e no cuidado em saúde. Os jovens do G1 revelaram maior preocupação com as consequências da revelação do HIV e dificuldades com o tratamento. Os relatos do G2 sugerem que a constituição de relações conjugais, incluindo parceiro/a e filhos soronegativos e o acesso ao tratamento, possibilitaram resignificar o receio da estigmatização. Os achados visam orientar a formação e ação de profissionais envolvidos na prevenção e cuidado de jovens vivendo com HIV.
Abstract This study analyzes how experiences of HIV-related stigma are expressed among HIV-positive young people transitioning to an adult clinic, the health service, the family, the affective-sexual interactions, and their relationship with inequalities and social hierarchies. This research included 31 young people (median age 21) transitioning to an adult clinic (G1) and 12 young people (median age 30) who had already made this transition (G2), both monitored at a health service in Rio de Janeiro. Seventy percent of the 43 young people were women and 65% were infected by mother-to-child transmission. Young people answered questionnaires and participated in focus groups on AIDS stigma and transition to adulthood. Most reported discrimination associated with HIV stigma in daily life and health care. G1 young people showed more significant concern about the consequences of HIV disclosure and difficulties with treatment. The G2 accounts suggest that establishing marital relationships, including HIV-negative partners and children, linked to treatment access allowed resignifying the fear of stigmatization. The findings aim to guide the training and action of professionals involved in the prevention and care of young people living with HIV.
Subject(s)
Humans , Female , Adolescent , Adult , Young Adult , HIV Infections/epidemiology , Infectious Disease Transmission, Vertical , Brazil , Social Stigma , Hospitals, PublicABSTRACT
Se describen como desafíos actuales en mucopolisacaridosis I la necesidad de una clasificación adecuada, vinculándola a las indicaciones terapéuticas; el diagnóstico temprano desde la pesquisa neonatal, sus ventajas y dificultades hasta la sospecha clínica de las formas grave y atenuada; el cuidado de la patología espinal y oftalmológica, desde el diagnóstico, el seguimiento y el tratamiento; las reacciones alérgicas por terapia de reemplazo enzimático, su diagnóstico y tratamiento. Por último, la transición hacia el cuidado adulto
Here we describe the current challenges of mucopolysaccharidosis type I: the need for an adequate classification, establishing its relationship to therapeutic indications; an early diagnosis, from neonatal screening, its advantages and barriers, to clinical suspicion of severe and attenuated forms; spinal and eye disease care, from diagnosis to follow-up and treatment; allergic reactions caused by enzyme replacement therapy, their diagnosis and treatment. And lastly, transition to adult care
Subject(s)
Humans , Male , Female , Infant, Newborn , Infant , Child, Preschool , Child , Adolescent , Mucopolysaccharidosis I/diagnosis , Mucopolysaccharidosis I/therapy , Neonatal Screening , Mucopolysaccharidosis I/classification , Eye Diseases/diagnosis , Eye Diseases/therapy , Transition to Adult Care , Hypersensitivity/diagnosis , Hypersensitivity/therapyABSTRACT
ABSTRACT Objective To identify among pediatric surgeons across Brazil how the transition of pediatric patients to adult clinics is carried out. Methods A questionnaire was emailed to pediatric surgeons registered with the Associação Brasileira de Cirurgia Pediátrica in 2018. The data assessed included training time, maximum age of care, subspecialty of practice, outpatient follow-up of adult patients, reason for continuing care of adult patients, referral to adult specialties, concern with transition of care, and what has been done to improve it. Results Most pediatric surgeons had more than 20 years of experience, and approximately 61% worked simultaneously at a public hospital, private hospital and private office. The maximum age of care at public, private hospitals and private offices proved to be quite varied. The follow-up of patients aged over 18 years at public hospitals, private hospitals and private clinics wase 32%, 23.58% and 20.75%, respectively. The main reason for patients aged over 18 years continued to be accompanied by pediatric surgeons was lack of knowledge about the disease by adult specialties. Most patients were referred to the adult specialty of the hospital, and roughly 37% of pediatric surgeons responded that they were in contact with the adult specialty. Most believed in autonomy of care of their patients and were concerned with transition of care. Conclusion Transition of care is a relevant issue that needs to be studied and debated to ensure an appropriate long-term follow-up.
RESUMO Objetivo Identificar entre os cirurgiões pediátricos de todo o Brasil como é realizada a transição de cuidados dos pacientes pediátricos para as clínicas adultas. Métodos Um questionário foi enviado por e-mail para cirurgiões pediátricos cadastrados na Associação Brasileira de Cirurgia Pediátrica no ano de 2018. Foram avaliados dados como tempo de formação, idade máxima de atendimento, subespecialidade de atuação, seguimento ambulatorial de pacientes adultos, motivo pelo qual continuava atendendo pacientes adultos, encaminhamento para especialidades adultas, preocupação com a transição de cuidados e o que tinha realizado para aprimorá-la. Resultados A maioria dos cirurgiões pediátricos tinha mais de 20 anos de experiência, e cerca de 61% atuavam simultaneamente em hospital público, hospital privado e clínica privada. A idade máxima de atendimento nos hospitais públicos e privados e nas clínicas privadas mostrou-se bastante variada. O acompanhamento de pacientes acima de 18 anos nos hospitais públicos, nos hospitais privados e nas clínicas privadas foi, respectivamente, 32%, 23,58% e 20,75%. O principal motivo pelo qual o paciente acima de 18 anos continuava sendo acompanhado por cirurgiões pediátricos foi falta de conhecimento da patologia pelas especialidades adulta. A maioria dos pacientes era encaminhada para a especialidade adulta do próprio hospital, e cerca de 37% dos cirurgiões pediátricos responderam que mantinham contato com a especialidade adulta. A maioria acreditava na autonomia de cuidados de seus pacientes e estava preocupada com a transição de cuidados. Conclusão A transição de cuidados é um assunto relevante e que precisa ser estudado e debatido para que se possa assegurar um adequado seguimento a longo prazo.
Subject(s)
Humans , Child , Adult , Specialties, Surgical , Patient Transfer , Referral and Consultation , Hospitals, Private , Hospitals, Public , Middle AgedABSTRACT
INTRODUCCIÓN: Cada vez más niños con enfermedades complejas logran sobrevivir requiriendo el paso de una atención pediátrica a una de adultos. Es fundamental contar con herramientas que permitan conocer el grado de preparación del paciente para este traslado. OBJETIVO: Crear un cuestionario local para medir el estado de preparación para la transición de adolescentes con enfermedad crónica y someterlo a pruebas de validación. PACIENTES Y MÉTODO: Basado en cuestionarios internacionales se diseñó un instrumento de auto-reporte que se sometió a validez de contenido por expertos, y luego a pruebas de comprensión y factibilidad en grupo piloto. Posteriormente se realizó validación de constructo y fiabilidad utilizando análisis factorial tras ser aplicado en adolescentes con enfermedad crónica. RESULTADOS: Tras el análisis por 11 expertos y piloto de 8 pacientes se obtuvo un instrumento que fue respondido en forma completa por 168 adolescentes. Edad promedio 14,4 años. Tras la validación de constructo se genera un instrumento de 24 ítems de alta relevancia clínica, con 9 ítems con resultados psicométricos aceptables, los que se destacan en el cuestionario final. CONCLUSIÓN: Se presenta un cuestionario de auto-reporte para medir el estado de preparación de los adolescentes para la transición a servicios de adultos. Las propiedades psicométricas del instrumento resultaron insuficientes para su validación, ya que sólo se comprueba la validez de constructo y confiabilidad para 9 de los 24 ítems.
INTRODUCTION: In the last decades more and more children survive with complex health conditions, requiring a transition from pediatric to adult care. It is essential to have instruments that provide information on the level of preparation of patients for this process. OBJECTIVE: To create and validate a questionnaire to measure the readiness status of adolescent patients with chronic diseases in the transition process. PATIENTS AND METHOD: Based on international questionnaires, a self-report instrument was designed which was subjected to content validity by experts, and then to comprehension and feasibility tests in a pilot group. Subsequently, construct and reliability validation were performed through a factorial analysis after applied it to adolescents living with a chronic illness. RESULTS: After the analysis made by 11 experts and the pilot group with 8 patients, we obtained an instrument that was fully answered by 168 teenagers (Average age 14.4 years). After construct validation, a 24-items instrument of high clinical relevance was developed, with 9 items with acceptable psychometric properties, which were highlighted in the final questionnaire. CONCLUSION: a self-report instrument aimed to measure the readiness of adolescents during the transition process to adult care is presented. The reported psycho metric properties of the instrument were insufficient to consider it validated since the construct vali dity and reliability were only checked for 9 of the 24 items.
Subject(s)
Humans , Male , Female , Child , Adolescent , Young Adult , Psychological Tests , Chronic Disease/therapy , Self Report , Transition to Adult Care , Psychometrics , Pilot Projects , Feasibility Studies , Chronic Disease/psychology , Reproducibility of ResultsABSTRACT
Resumen Introducción: Se espera que pacientes con lupus pediátrico próximos a la transición asuman responsabilidades de su cuidado, pero muchos no están preparados, lo cual empobrece su pronóstico. Según el modelo autorregulatorio, las percepciones de la enfermedad determinan las respuestas emocionales, guían las conductas de afrontamiento, su evaluación, retroalimentación y estrategias de asimilación. Objetivo: Describir las percepciones sobre el lupus en adolescentes próximos a la transición. Materiales y métodos: Desde un enfoque hermenéutico y utilizando técnicas de la teoría fundada, se realizaron 11 entrevistas semiestructuradas entre junio de 2013 y septiembre de 2014 a 9 adolescentes con diagnóstico de lupus. Resultados: Se obtuvieron 1.800 códigos. Emergieron como categorías preliminares: «Intentando explicar el origen¼, donde se interpreta la causa de la enfermedad en términos de inmunosupresión y autoinmunidad, asociación con cáncer, culpa e influencia de factores emocionales, además el proceso diagnóstico. «Lo que se pierde¼, enmarcado en cambios, trato diferencial y límites. Finalmente, los «aspectos positivos¼: enfermedad como modulador de la conducta, adquisición de cualidades, aprendizaje sobre el funcionamiento corporal y ganancia secundaria. Conclusión: Las percepciones de la enfermedad en estos adolescentes, expresan en la experiencia de cambio las implicaciones del diagnóstico, las cuales impactan múltiples aspectos de sus vidas y traen consigo incertidumbre y necesidad de ajustes que les llevan a la búsqueda de explicaciones. Se requiere mayor conciencia sobre estas percepciones, debido a que, junto con otros factores, determinarán las estrategias que los adolescentes desarrollen para garantizar su autocuidado y adaptación a situaciones derivadas del vivir con la enfermedad.
Abstract Introduction: Patients with paediatric lupus nearing transition to adult care are expected to take responsibility for their care. Nevertheless, many are not prepared for this, and thus have a poorer prognosis. Using the self-regulation model, the perception of a condition determines the emotional responses and guides coping efforts, appraisal, feedback, and assimilation strategies. Objective: To describe how adolescents nearing transition perceive lupus. Materials and methods: Eleven semi-structured interviews were conducted using a hermeneutic approach with techniques from grounded theory. Interviews took place between July 2013 and September 2014. The participants were nine adolescents with diagnosed lupus. Results: A total of 1,800 codes were obtained that emerged as the following preliminary categories: "Attempting to explain the origin", where the cause of the disease is interpreted as immunosuppression, autoimmunity, association with cancer, guilt and influence of emotional factors, along with the diagnosis process. "What is lost", which includes changes, being treated differently, and having limitations. The last category was "positive aspects" deals with illness as a behavioural moderator, acquiring qualities, learning about bodily functioning and secondary gain. Conclusion: Adolescents perceive their condition based on the implications of the changes experienced in their lives as a result of the diagnosis. Lupus affects several aspects of their lives and brings uncertainty and a need to adjust, leading them to look for explanations. More awareness of these perceptions is required because the latter, along with other factors, determine the strategies that adolescents develop to ensure their self-care and adaptation to any situations arising from living with the condition.
Subject(s)
Humans , Adolescent , Social Perception , Lupus Erythematosus, Systemic , Self Care , Adaptation to Disasters , Adolescent Health , Diagnosis , Transition to Adult CareABSTRACT
Introducción: El pasaje de adolescentes de un centro pediátrico a otro de adultos es un proceso complejo. El objetivo fue evaluar el proceso de transición-transferencia de adolescentes con enfermedades crónicas en el Hospital Garrahan. Métodos: Estudio observacional, transversal, cualicuantitativo. Se obtuvieron datos estadísticos retrospectivos sobre la consulta ambulatoria de pacientes de 16-26 años y se realizaron encuestas y/o entrevistas a profesionales, adolescentes y familiares de diferentes programas de seguimiento. Resultados: La prevalencia de atención a mayores de 16 años fue 7, 2%. Se encuestaron 54 profesionales asistentes, 150 pacientes (1626, 7 años) y 141 familiares. Se entrevistó a 45 profesionales con cargos de gestión. Profesionales: el 39% recibió capacitación en transición. Todos identificaron obstáculos y facilitadores en los diferentes actores e instituciones intervinientes. Reconocieron la importancia en fomentar la autonomía en sus pacientes, pero solo 30% los entrevistaba solos y 56, 6% les entregaba informes médicos. Estrategias: la mediana de edad de transferencia fue18 años (13-20); 62% tenía un protocolo; 84%, un acuerdo informal con otra institución; atención conjunta o paralela: 49%;solo 20% utilizaba un plan de transición. Pacientes y familiares: 4, 7% de los adolescentes concurrían solos a las consultas y el profesional le había preguntado al 45% sobre su autonomía y preparación para cuidar su salud. Los adolescentes y sus padres percibían sensaciones asociadas al proceso (con predominio, negativas) e identificaban estrategias facilitadoras, como contar con un resumen, conocer el nuevo lugar y profesionales formados. Conclusiones: El proceso de transición del adolescente con enfermedad crónica es aún deficitario y su abordaje incluye a los equipos de salud y a las familias. Se identificaron falta de acuerdos interinstitucionales formales, aunque sí mayores acuerdos informales entre los profesionales, y la necesidad de fomentar la autonomía del paciente crónico. Entre las estrategias facilitadoras, los pacientes y sus padres reconocieron, principalmente, la necesidad de contar con un resumen médico, pautas de cuidado y confianza en el nuevo profesional.
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.
Subject(s)
Humans , Male , Female , Adolescent , Young Adult , Chronic Disease/therapy , Transition to Adult Care/organization & administration , Argentina , Chronic Disease/psychology , Cross-Sectional Studies , Caregivers , Health Care Surveys , Qualitative ResearchABSTRACT
Health care research requires different methodological approaches such as qualitative and quantitative analyzes to understand the phenomena under study. Qualitative research is usually the least considered. Central elements of the qualitative method are that the object of study is constituted by perceptions, emotions and beliefs, non-random sampling by purpose, circular process of knowledge construction, and methodological rigor throughout the research process, from quality design to the consistency of results. The objective of this work is to contribute to the methodological knowledge about qualitative research in health services, based on the implementation of the study, The transition process from pediatric to adult services: perspectives from adolescents with chronic diseases, caregivers and health professionals. The information gathered through the qualitative methodology facilitated the understanding of critical points, barriers and facilitators of the transition process of adolescents with chronic diseases, considering the perspective of users and the health team. This study allowed the design of a transition services model from pediatric to adult health services based on the needs of adolescents with chronic diseases, their caregivers and the health team.
Subject(s)
Humans , Male , Female , Adolescent , Young Adult , Chronic Disease/therapy , Delivery of Health Care/methods , Qualitative Research , Transition to Adult Care , Parents , Adolescent Health Services , Health PersonnelABSTRACT
Inflammatory bowel disease (IBD) is a prevalent chronic disorder, often diagnosed during childhood. Studies have suggested that the incidence of IBD in this group of patients is increasing. Children and adolescents with IBD frequently have more extensive and severe disease than adults. Transition is an important concept to ensure optimal health care management of adolescents and young adult patients with chronic physical and medical conditions. During this process there is a change in knowledge, attitudes and behavior towards the disease with a responsibility that gradually shifts from parents to the patient. The success of the transition process depends on the patient, pediatric and adult gastroenterologists. Thus, providers need to understand how to start, maintain and finish this process. When transition process is coordinated, staged and well planned, the adolescent and young adult will acquire the tools needed to successfully self-manage his or her own medical condition. Rather than a universal model of transition, each institution needs to adapt the most efficient model. The aim of this article is to review concepts pertinent to transition management for adolescents and young adults with IBD.
Subject(s)
Adolescent , Adult , Humans , Young Adult , Inflammatory Bowel Diseases/therapy , Transition to Adult Care , Adolescent Development , Physician-Patient RelationsABSTRACT
OBJECTIVE: To evaluate the accuracy of serum IGF-1 in the detection of isolated (IGHD) or combined growth hormone deficiency (CGHD) at the transition phase. SUBJECTS AND METHODS: Forty nine patients with GHD during childhood [16 with IGHD (10 men) and 33 with CGHD (24 men); age 23.2 ± 3.5 yrs.] were submitted to an insulin tolerance test (ITT) with a GH peak < 5 µg/L used for the diagnosis of GHD at the transition phase. Pituitary function and IGF-1 measurements were evaluated in the basal sample of the ITT. Transition patients were reclassified as GH-sufficient (SGH; n = 12), IGHD (n = 7), or CGHD (n = 30). RESULTS: Five (31%) patients with IGHD and 32 (97%) with CGHD at childhood persisted with GHD at retesting. One patient with IGHD was reclassified as CGHD, whereas 3 patients with CGHD were reclassified as IGHD. Mean GH peak was 0.2 ± 0.3 µg/L in the CGHD, 1.3 ± 1.5 µg/L in the IGHD, and 18.1 ± 13.1 µg/L in the SGH group. Serum IGF-1 level was significantly higher in the SGH (272 ± 107 ng/mL) compared to IGHD (100.2 ± 110) and CGHD (48.7 ± 32.8) (p < 0.01). All patients reclassified as CGHD, 86% reclassified as IGHD, and 8.3% reclassified as SGH had low IGF-1 level, resulting in 97.3% sensitivity and 91.6% specificity in the detection of GHD at the transition period; the cutoff value of 110 ng/mL showed 94.5% sensitivity and 100% specificity. Mean IGF-1 values did not differ in IGHD or CGHD associated with one, two, three, or four additional pituitary deficiencies. CONCLUSION: IGF-1 measurement is accurate to replace ITT as initial diagnostic test for IGHD and CGHD detection at the transition phase.
OBJETIVO: Avaliar a acurácia da dosagem sérica de IGF-1 no diagnóstico da deficiência de hormônio de crescimento isolada (DGHI) ou combinada (DGHC) na fase de transição. SUJEITOS E MÉTODOS: Quarenta e nove pacientes com DGH na infância [16 DGHI (10 homens) e 33 DGHC (24 homens); idade 23,2 ± 3,5 anos] realizaram teste de tolerância à insulina (TTI), com pico de GH < 5 µg/L considerado diagnóstico de DGH na transição. Função hipofisária e níveis de IGF-1 foram determinados na amostra basal do TTI e os pacientes foram reclassificados em GH suficientes (SGH; n = 12), DGHI (n = 7) ou DGHC (n = 30). RESULTADOS: Cinco (31%) pacientes com DGHI e 32 (97%) com DGHC na infância persistiram com DGH no reteste. Um paciente com DGHI foi reclassificado como DGHC e três com DGHC como DGHI. Os picos médios de GH foram 0,2 ± 0,3 µg/L (DGHC), 1,3 ± 1,5 µg/L (DGHI) e 18,1 ± 13,1 µg/L (SGH). O nível médio de IGF-1 foi maior no grupo SGH (272 ± 107 ng/mL) comparado com DGHI (100,2 ± 110) e DGHC (48,7 ± 32,8) (p < 0,01). IGF-1 baixo foi observado em todos os pacientes reclassificados como DGHC, 86% dos DGHI e 8,3% dos SGH, resultando em sensibilidade de 97,3% e especificidade de 91,6% para detecção de DGH na transição; valor de corte de 110 ng/mL mostrou 94,5% sensibilidade e 100% especificidade. O nível médio de IGF-1 foi similar nos pacientes com DGHI ou DGHC com uma, duas, três ou quatro deficiências hipofisárias associadas. CONCLUSÃO: A dosagem sérica de IGF-1 mostrou-se acurada para substituir o TTI na detecção tanto de DGHI como DGHC na transição.
Subject(s)
Adolescent , Adult , Female , Humans , Male , Young Adult , Human Growth Hormone/deficiency , Insulin-Like Growth Factor I/analysis , Pituitary Diseases/diagnosis , Age Factors , Analysis of Variance , Cross-Sectional Studies , Human Growth Hormone/blood , Insulin/metabolism , Pituitary Function Tests , Predictive Value of Tests , Pituitary Diseases/blood , Reference Values , Retrospective Studies , Transition to Adult CareABSTRACT
With the increasing prevalence of diabetes mellitus in children, transitioning patients from childhood to adulthood are increasing. High-risk behaviors and poor glycemic control during the transition period increase the risk for hypoglycemia and hyperglycemia as well as chronic microvascular and macrovascular complications. Discussions regarding complications and preparations for transition must take place before the actual transition to adult care systems. Pediatric care providers should focus on diabetes self-management skills and prepare at least 1 year prior to the transfer. Pediatric providers should also provide a written summary about previous and current glycemic control, complications and the presence of mental health problems such as disordered eating behaviors and affective disorders. Transition care should be individualized, with an emphasis on diabetes self-management to prevent acute and long-term complications. Regular screening and management of complications should proceed according to pediatric and adult guidelines. Birth control, use of alcohol, smoking and driving should also be discussed. Barriers to self-management and care must be recognized and solutions sought. The goals of transitional care are to effectively transition the diabetic patient from the pediatric to adult care system with less elapsed time in between and to improve post-transition outcome. Previous studies regarding diabetes transitional care programs including patient education programs, medical coordinators and auxiliary service systems reported promising results. However, there is a lack of evidence regarding best practices in transition care. Further studies are needed to provide evidence based transitional care programs that take both medical and psychosocial aspects of diabetes care into consideration.