ABSTRACT
Resumen Introducción: La Escala Revisada de Valoración Funcional de la Esclerosis Lateral Amiotrófica es una herramienta básica para la evaluación de personas con esta enfermedad. En nuestro país se utilizan versiones sin el proceso metodológico necesario para adaptarlas culturalmente y poder certificar lo vero símil de los datos recogidos. Fue nuestro objetivo generar una apropiada versión adaptada al español argentino. Métodos: Se realizó la adaptación transcultural de la escala produciendo su versión argentina, conforme proce dimientos y medidas de verificación de calidad metodológica internacionalmente aceptadas: proceso secuencial de traducción/síntesis/retrotraducción; resolución de discrepancias y consolidación de la versión obtenida por comité multidisciplinario bajo metodología Delphi; puesta a prueba de dicha versión en una población de perso nas con esclerosis lateral amiotrófica analizando el nivel de dificultad sintáctico-pragmático; constitución de la versión final. El análisis del nivel de dificultad se constituyó en base a los siguientes indicadores: moda, mediana, índice variación cualitativa, razón de variación, frecuencia acumulada de apreciaciones positivas, identificación/ modificación de ítems observados, tomando como base un criterio de concordancia ≥ 80%. Resultados: Tras 3 rondas de consulta se obtuvo la versión consensuada por el comité, obteniéndose niveles de concordancia del 83,33%-100%. Su puesta a prueba involucró a 21 alfabetos funcionales, nativos/residentes, 67% hombres, media edad 51 años, media evolución 1,4 años. Ausencia de dificultad a nivel comprensión y la ausencia de ítems conflictivos. Discusión: La versión obtenida demostró su validez de contenido conceptual respecto de la original, sin presentar conflictos semánticos o pragmáticos que afecten su uso en nuestra población.
Abstract Introduction: Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised is a basic tool for the evaluation of people with this disease. In our country, versions are used without the necessary methodological process to adapt them culturally and to be able to certify the plausibility of the data collected. It was our goal to generate an appropriate version adapted to Argentine Spanish. Methods: Cross-cultural adaptation of the scale was ca rried out, producing its Argentine version. Said production was carried out according to internationally accepted methodological procedures: sequential process of translation / synthesis / back-translation and consolidation of the version obtained by a multidisciplinary committee that solved of disagreements under Delphi methodology. The version obtained was tested on ALS people to determine of the existing syntactic - pragmatic level of difficulty, after which the final version was constituted. Difficulty level analysis was performed according to indicators: mode, median, qualitative variation index, variation ratio, accumulated frequency of positive evaluations, identification/ modification of observed items (determining criterion: concordance criterion ≥ 80%). Results: After 3 rounds of consultation, the version agreed upon by the committee was obtained, obtaining agreement levels of 83.33%-100%. Its testing involved 21 functional alphabets, natives/residents, 67% men, mean age 51 years old, mean evolution 1.4 years. The general indicators supported the understanding of the version and the absence of conflicting items. Discussion: The version obtained demonstrated its conceptual content validity regarding the English version, presenting not semantic nor pragmatic conflicts affecting their use in an Argentine population of ALS patients.
ABSTRACT
OBJECTIVE: To evaluate the functional status of amyotrophic lateral sclerosis (ALS) patients diagnosed at this institution; to analyze hospital and palliative care; to identify patients' knowledge about home care and supportive resources. METHOD: Twenty-nine patients were evaluated on the ALSFRS-R scale and two semi-structured questionnaires, at the start of the study and every four months thereafter for 1 year. RESULTS: ALSFRS-R score was 30.1±11.5 initially and 24.4±10.5 at 1 year. There was an increase in use of physiotherapeutic care and adaptive aids. The primary caregivers were spouses (55.2 percent), parents/children/cousins (20.7 percent), friends (10.3 percent) and private nurses (3.5 percent); 10.3 percent of patients had no caregivers. Basic ALS patient care was provided by the public health system. CONCLUSION: ALS patients' multidisciplinary care was provided by UNICAMP hospital and its outpatient clinics and, in some patients, complemented by a private health plan or personal expenditure. Few ALS patients were aware of the possibility of home nursing. It is necessary to implement national and regional public home nursing in addition to multidisciplinary specialized care of ALS patients.
OBJETIVO: Avaliar o estado funcional de um grupo de pacientes com esclerose lateral amiotrófica (ELA) na instituição; analisar a assistência hospitalar e de cuidados paliativos; identificar o conhecimento dos pacientes sobre potenciais recursos de assistência e home care. MÉTODO: Vinte e nove pacientes foram submetidos à escala ALSFRS-R e dois questionários semi-estruturados no início do estudo e a cada 4 meses, por um ano. RESULTADOS: O escore inicial da ALSFRS-R foi 30,1±11,5 e o final 24,4±10,5, tendo sido necessária maior assistência fisioterápica e uso de órteses. O cuidador primário foi: cônjuge (55,2 por cento), pais/filhos/primos (20,7 por cento), amigos (10,3 por cento), particular (3,5 por cento); 10,3 por cento não tinham cuidador. A assistência na ELA baseou-se no sistema público de saúde. CONCLUSÃO: O cuidado multidisciplinar ao paciente com ELA fez-se através do hospital e ambulatórios UNICAMP e, para alguns pacientes, houve complementação por plano de saúde e custeio pessoal. A maioria dos pacientes desconhecia a possibilidade de assistência domiciliar na ELA. Faz-se necessária a estruturação nacional e regional da assistência domiciliar pública em ELA, acrescida ao trabalho multidisciplinar especializado.