RESUMO
ABSTRACT Background: Parkinson's disease (PD) is a chronic disease that presents a multitude of symptoms, with symptoms of both motor and nonmotor nature. The Delphi method is widely used to create consensuses among experts in a field of knowledge. Objective: In order to reach a consensus on the values that should be assigned to the different motor and nonmotor manifestations of Parkinson's disease, a linear evaluation index (LEI) was created. Subsequently, the metric properties of this index were studied. Methods: 120 consecutive patients with a Parkinson's diagnosis were chosen in accordance with the UKPDSBB criteria. The Delphi method was used to reach a consensus among experts regarding the values of each of the manifestations included. Subsequently, the following attributes were analyzed: quality and acceptability of the data; reliability, in terms of internal consistency, reliability index, Cronbach's alpha and standard error of measurement; and validity, in terms of convergent validity and validity for known groups. Results: Twenty-five experts participated. The importance factor did not differ between the first round and the second round (chi-square test). We analyzed the responses that assigned percentage values to the 10 dimensions of the LEI. Both in the first and in the second round, the values of the scattering coefficient Vr were always close to 0. The homogeneity index was 0.36; the corrected-item total correlation values ranged from 0.02 to 0.7; Cronbach's α was 0.69; and the SEM was 4.23 (55.1%). Conclusions: The LEI was obtained through rigorous recommended methodology. The results showed adequate metric properties.
RESUMO Antecedentes: La enfermedad de Parkinson (EP) es una enfermedad crónica que presenta una multitud de síntomas, tanto de naturaleza motora cuanto no motora. El método Delphi se utiliza ampliamente para crear un consenso entre expertos de un campo del conocimiento. Objetivos: Con el fin de llegar a un consenso sobre los valores que deben asignarse a las diferentes manifestaciones motoras y no motoras de la enfermedad de Parkinson, se creó el "Índice de Evaluación Lineal" (linear evaluation index - LEI). Posteriormente, se estudiaron las propiedades métricas de este índice. Métodos: Se eligieron 120 pacientes consecutivos con diagnóstico de Parkinson según los criterios del UKPDSBB. Se utilizó el método Delfos para llegar a un consenso entre los expertos sobre los valores de cada una de las manifestaciones incluidas. Posteriormente, se analizaron los siguientes atributos: Calidad y aceptabilidad de los datos. Fiabilidad: consistencia interna, índice de fiabilidad, alfa de Cronbach y error estándar de medida. Finalmente, Validez: validez convergente y validez para grupos conocidos. Resultados: Participaron 25 expertos, el factor de importancia entre la primera y la segunda rondas (prueba chi-cuadrado), no fue diferente. Analizamos las respuestas que asignaron valores porcentuales a las 10 dimensiones del LEI; tanto en la primera como en la segunda rondas, los valores del coeficiente de dispersión Vr siempre estuvieron cerca de 0. El índice de homogeneidad fue de 0,36; los valores corregidos de correlación ítem-total variaron de 0,02 a 0,7; alpha de Cronbach fue de 0,69. El SEM fue 4,23 (55,1%). Conclusiones: El LEI se ha obtenido siguiendo una rigurosa metodología recomendada. Los resultados han mostrado propiedades métricas adecuadas.
Assuntos
Humanos , Doença de Parkinson/diagnóstico , Inquéritos e Questionários , Reprodutibilidade dos Testes , ConsensoRESUMO
Huntington's disease (HD) is a rare neurodegenerative disease with a multitude of symptoms, which requires access to specialized multidisciplinary care for adequate management. The aim of this study was to survey the characteristics of care in various HD centers in South America (SA).
A questionnaire was sent to 24 centers involved in the care for HD patients in SA.
Of the total 24 centers, 19 (79.2%) are academic units. The majority of centers (62.5%) are general movement disorders clinics. Multidisciplinary care is available in 19 (79.2%) centers and in 20 (83.3%) care is provided free of charge. Genetic testing and counseling are available in 25 and 66.6% of centers, respectively. The majority of centers (83.3%) have no institutional support for end-stage care.
Although HD centers in SA are committed to providing multidisciplinary care, access to genetic counseling and end-stage care are lacking in most centers.
A doença de Huntington (DH) é uma doença neurodegenerativa rara que requer tratamento multidisciplinar especializado para manejo adequado. O objetivo do presente trabalho foi pesquisar as características da assistência à saúde em centros de DH na América do Sul (AS).
Um questionário foi enviado para 24 centros envolvidos no cuidado de pacientes com DH na AS.
Dos 24 centros, 19 (79,2%) são unidades acadêmicas. A maioria (62,5%) são clínicas de distúrbios dos movimentos. Cuidado multidisciplinar é disponível em 19 (79,2%) dos centros e em 20 (83,3%), o tratamento é gratuito. O teste e o aconselhamento genético estão disponíveis em 25 e 66,6% dos centros, respectivamente. Não há suporte institucional para cuidado terminal em 83,3% dos centros.
Apesar dos centros de DH na AS terem compromisso com o provimento de cuidados multidisciplinares, o acesso a aconselhamento genético e a tratamento na fase terminal são falhos na maioria dos centros.