ABSTRACT
INTRODUCTION: Cystic Fibrosis (CF) is the most frequent chronic hereditary disease in the white race. Although the impact on the quality of life of this disease is significant, there are no validated instruments in the Chilean population to measure it. OBJECTIVE: To carry out a cultural and linguistic adaptation and validate the content and reliability of the CFQ-R Cystic Fibrosis Questionnaire, Spanish version 2.0. PATIENTS AND METHOD: The process was carried out in two stages. The first stage consists of an ins trumental design to adapt it culturally and linguistically, evaluate content validity by consulting ex perts, and test the comprehension of the questionnaire in patients and parents through qualitative interviews and a focus group. In the second stage with an observational and cross-sectional design in a sample of 122 people with CF or their caregivers, the behavior of the questionnaire was analyzed using descriptive statistics and Cronbach's alpha for reliability. RESULTS: Stage 1: the instrument in its three versions is considered valid with Lynn's index > 0.8 and Validity Coefficient > 0.7. Stage 2: The adolescent/adult and parent/caregiver versions obtain Cronbach's a > 0.7 and an average > 3 in most dimensions. CONCLUSION: The questionnaire is adapted and validated in the Chilean population and requires minor modifications. This version is reliable, valid, and allows the assessment of the quality of life in people with CF. It is suggested to increase the sample for the analysis of construct validity with a larger number of patients.
Subject(s)
Cystic Fibrosis , Quality of Life , Adolescent , Adult , Child , Chile , Cross-Sectional Studies , Cystic Fibrosis/diagnosis , Humans , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
Resumen La Fibrosis Quística (FQ) es la enfermedad hereditaria de pronóstico reservado más frecuente en raza blanca. Desde el año 2003, Chile inicia un Programa Nacional de Fibrosis Quística, de carácter integral, dirigido por la Unidad de Salud Respiratoria del Ministerio de Salud. Hasta la fecha, los principales resultados del Programa registran una significativa mayor sobrevida (promedio 27 años) y una significativa reducción en la edad de diagnóstico de los pacientes ingresados desde 2006 en adelante. El acceso a la canasta GES (Garantías Explícitas en Salud), la implementación del tamizaje neonatal en algunas regiones del país, la organización y la constitución de equipos entrenados en FQ de diversas especialidades, ha contribuido a mejorar los resultados. Si bien las principales manifestaciones son del aparato respiratorio y digestivo, el carácter multisistémico de la FQ obliga a conocer los distintos aspectos involucrados en su manejo, a fin de optimizar los resultados del tratamiento y los recursos invertidos, tanto en el sector público como privado. Este documento es una revisión y actualización sobre los principales aspectos del diagnóstico, seguimiento y tratamiento de las manifestaciones respiratorias y no respiratorias de la FQ.
Cystic Fibrosis (CF) is the most frequent hereditary disease in whites, with a reserved prognosis. Since 2003, Chile began a comprehensive National Cystic Fibrosis Program, directed by the Respiratory Health Unit of the Ministry of Health. To date, the main results of the Program record a significantly longer survival (average 27 years) and a significant reduction in the age of diagnosis of patients admitted from 2006 onwards. Access to Chilean Explicit Health Guarantees, the implementation of neonatal screening in some regions of the country, the organization and setting up of CF-trained teams of various specialties, has contributed to improving results. Although the main manifestations are of the respiratory and digestive system, the multisystemic nature of CF makes it necessary to know the different aspects involved in its management, in order to optimize the results of the treatment and the resources invested, both in the public and private sectors. This document is a review and an update on the main aspects of the diagnosis, monitoring and treatment of the respiratory and non-respiratory manifestations of CF.
ABSTRACT
Cystic Fibrosis (CF) is the most frequent hereditary disease in whites, with a reserved prognosis. Since 2003, Chile began a comprehensive National Cystic Fibrosis Program, directed by the Respiratory Health Unit of the Ministry of Health. To date, the main results of the Program record a significantly longer survival (average 27 years) and a significant reduction in the age of diagnosis of patients admitted from 2006 onwards. Access to Chilean Explicit Health Guarantees, the implementation of neonatal screening in some regions of the country, the organization and setting up of CF-trained teams of various specialties, has contributed to improving results. Although the main manifestations are of the respiratory and digestive system, the multisystemic nature of CF makes it necessary to know the different aspects involved in its management, in order to optimize the results of the treatment and the resources invested, both in the public and private sectors. This document is a review and an update on the main aspects of the diagnosis, monitoring and treatment of the respiratory and non-respiratory manifestations of CF.
La Fibrosis Quística (FQ) es la enfermedad hereditaria de pronóstico reservado más frecuente en raza blanca. Desde el año 2003, Chile inicia un Programa Nacional de Fibrosis Quística, de carácter integral, dirigido por la Unidad de Salud Respiratoria del Ministerio de Salud. Hasta la fecha, los principales resultados del Programa registran una significativa mayor sobrevida (promedio 27 años) y una significativa reducción en la edad de diagnóstico de los pacientes ingresados desde 2006 en adelante. El acceso a la canasta GES (Garantías Explícitas en Salud), la implementación del tamizaje neonatal en algunas regiones del país, la organización y la constitución de equipos entrenados en FQ de diversas especialidades, ha contribuido a mejorar los resultados. Si bien las principales manifestaciones son del aparato respiratorio y digestivo, el carácter multisistémico de la FQ obliga a conocer los distintos aspectos involucrados en su manejo, a fin de optimizar los resultados del tratamiento y los recursos invertidos, tanto en el sector público como privado. Este documento es una revisión y actualización sobre los principales aspectos del diagnóstico, seguimiento y tratamiento de las manifestaciones respiratorias y no respiratorias de la FQ.
Subject(s)
Humans , Child , Adult , Delivery of Health Care, Integrated , Cystic Fibrosis/diagnosis , Cystic Fibrosis/therapy , Chile , Nutritional Status , Cystic Fibrosis/rehabilitation , Consensus , Health ResourcesABSTRACT
The purpose of this study was to evaluate the poly-axial locked plating system inserted through a minimally invasive approach for the treatment of three-part fractures of the proximal humerus. Twenty-three patients with a three-part fracture of the proximal humerus treated with a poly-axial locking plate through a percutaneous approach were available for clinical and radiological analysis at a minimum of 2 years follow up (average 36 months; range, 24-54 months). To assess objective and subjective outcomes the Constant Score (CS) and the Disabilities of the Arm, Shoulder, and Hand (DASH) score were obtained. All complications were recorded. There were 17 women and 6 men, with a mean age of 62 years (range, 18-86). All fractures healed. At final follow up, the mean forward flexion, external rotation and internal rotation were 126°, 44° and L1, respectively; the mean CS was 64 and the mean DASH score was 23. Twelve patients (52%) had a postoperative complication, which included screw cut-out, stiffness and infection. The poly-axial locked plating system through a minimally-invasive approach may be an appropriate treatment for three-part fractures of the proximal humerus and may reduce the biological aggression of conventional plate fixation.
Subject(s)
Bone Plates , Bone Screws , Fracture Fixation/methods , Postoperative Complications/surgery , Shoulder Fractures/surgery , Adolescent , Adult , Aged , Aged, 80 and over , Disability Evaluation , Equipment Design , Female , Follow-Up Studies , Fracture Healing , Humans , Injury Severity Score , Male , Middle Aged , Minimally Invasive Surgical Procedures , Patient Satisfaction , Postoperative Complications/diagnostic imaging , Postoperative Complications/physiopathology , Radiography , Range of Motion, Articular , Risk Assessment , Shoulder Fractures/diagnostic imaging , Shoulder Fractures/physiopathology , Surveys and Questionnaires , Time Factors , Treatment OutcomeABSTRACT
Es una malformación congénita infrecuente de etiología desconocida, producida por defecto del desarrollo del sistema respiratorio. El diagnóstico puede sospecharse en un niño con falla respiratoria en quien la radiografía de toráx muestra una capacidad total de un pulmón con desviación del mediastino. En el diagnóstico diferencial se han utilizado la broncoscopía y la angiografía; nuestros pacientes se diagnosticaron con tomografía axial computarizada (TAC), que demostró la ausencia de perfusión y ventilación del lado afectado. Se presentan dos lactantes de sexo femenino con aplasia pulmonar. El diagnóstico fue realizado por clínica y TAC. La paciente con malformación derecha falleció poco después de hecho el diagnóstico por insuficiencia respiratoria secundaria a infección. La paciente con aplasia pulmonar izquierda sobrevive, con buen desarrollo y presenta una enfermedad pulmonar obstructiva moderada
