Calidad de vida relacionada con la salud en pacientes con esclerosis lateral amiotrófica / Quality of life related to health in patients with amyotrophic lateral sclerosis

Introducción: El deterioro progresivo de los pacientes con esclerosis lateral amiotrófica (ELA) genera un gran impacto sobre su calidad de vida relacionada con la salud (CVRS). En este estudio se evalúa la CVRS en una muestra de pacientes diagnosticados de ELA y se pretende estimar la capacidad predictiva de un conjunto de variables sociodemográficas en las distintas dimensiones que conforman el cuestionario. Métodos: Se evaluó a un total de 63 pacientes diagnosticados de ELA, a través de un cuestionario sociodemográfico y del cuestionario genérico de salud SF-36. Se estudiaron variables sociodemográficas como sexo, edad, existencia de cuidador, situación laboral y tiempo desde el diagnóstico de la enfermedad. Resultados: El cuestionario SF-36 muestra una correlación positiva entre las diferentes dimensiones que la componen lo que demuestra su confiabilidad. Las puntuaciones medias obtenidas en cada una de las dimensiones del SF-36 son mayores en hombres que en mujeres, aunque esta diferencia es significativa solo en la dimensión Rol físico, siendo el grupo de pacientes de menor edad (menos de 56 años) quienes presentan puntuaciones medias más altas en la mayoría de las dimensiones del SF-36. La mayor parte de la variancia de la prueba queda explicada por la variable existencia de cuidador. Conclusiones: Se confirma la capacidad del SF-36 como medida válida y fiable de la CVRS para pacientes con un diagnóstico de ELA, que discrimina entre pacientes con diferentes estados de salud según su nivel de dependencia

Introduction: Progressive deterioration in patients with amyotrophic lateral sclerosis (ALS) has a major impact on their health-related quality of life (HRQOL). The objectives of this study are to evaluate HRQOL in a sample of patients diagnosed with ALS and estimate the predictive capability of a set of sociodemographic variables for the different scales covered by a general health survey. Methods: A total of 63 patients diagnosed with ALS were assessed using a sociodemographic questionnaire and the SF-36 general health survey. The sociodemographic variables studied were sex, age, presence of a caregiver, employment status, and time from diagnosis of disease. Results: The SF-36 survey shows positive correlations between the different scales composing it, which proves its reliability. The mean scores obtained for each of the SF-36 scales were higher in men than in women, although the only statistically significant difference was for the Physical Role scale. The lowest age range (less than 56 years) presented the highest mean scores for most of these dimensions. Most of the variance in the test is explained by the variable 'presence of caregiver'. Conclusions: The SF-36 health survey has been confirmed as a valid and useful tool for evaluating HRQOL in ALS patients, and it discriminates between patients in different states of health according to their level of dependency

[Health-related quality of life in patients with amyotrophic lateral sclerosis]. / Calidad de vida relacionada con la salud en pacientes con esclerosis lateral amiotrófica.

INTRODUCTION: Progressive deterioration in patients with amyotrophic lateral sclerosis (ALS) has a major impact on their health-related quality of life (HRQOL). The objectives of this study are to evaluate HRQOL in a sample of patients diagnosed with ALS and estimate the predictive capability of a set of sociodemographic variables for the different scales covered by a general health survey. METHODS: A total of 63 patients diagnosed with ALS were assessed using a sociodemographic questionnaire and the SF-36 general health survey. The sociodemographic variables studied were sex, age, presence of a caregiver, employment status, and time from diagnosis of disease. RESULTS: The SF-36 survey shows positive correlations between the different scales composing it, which proves its reliability. The mean scores obtained for each of the SF-36 scales were higher in men than in women, although the only statistically significant difference was for the Physical Role scale. The lowest age range (less than 56 years) presented the highest mean scores for most of these dimensions. Most of the variance in the test is explained by the variable 'presence of caregiver'. CONCLUSIONS: The SF-36 health survey has been confirmed as a valid and useful tool for evaluating HRQOL in ALS patients, and it discriminates between patients in different states of health according to their level of dependency.