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Diários electrónicos para avaliação de flutuações motoras e discinésias na doença de Parkinson
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Introdução: Os doentes com doença de Parkinson apresentam flutuações motoras e discinésias à medida que a doença progride e emergem efeitos secundários da terapêutica. Os diários são uma ferramenta essencial de registo de flutuações clínicas. A qualidade dos dados dos diários de papel é presentemente questionada.
Objectivos: Avaliar a exequibilidade e a facilidade de utilização de diários electrónicos (DE), a adesão dos doentes ao seu preenchimento e a fiabilidade dos dados obtidos, quando comparados com diários de papel.
Métodos: Este estudo é um ensaio cruzado e aleatorizado. Doentes com flutuações motoras e discinésias completavam em ambulatório um diário, de 48 horas, de papel ou electrónico, de acordo com o período do estudo. A facilidade de utilização dos diários foi avaliada por questionário. Cada doente foi ainda observado em 3 períodos de 6 horas, em que doentes e investigador classificaram, de forma independente, o estadio motor predominante apresentado e preencheram escalas de discinésias.
Resultados: Foram incluídos 21 doentes. Os perfis dos registos clínicos obtidos nos DE e de papel não diferiram. A adesão ao registo de entradas nos DE foi de 100%, mas 92,8% dos doentes apresentaram atrasos. 57,1% dos doentes apresentaram entradas inválidas nos diários de papel. A concordância entre os registos dos doentes e do investigador foi elevada a moderada em 71,4% dos casos. A variabilidade entre os diários electrónicos e de papel foi inferior à apresentada entre dois diários de papel utilizados num outro ensaio. 71,4% considerou que os DE não foram difíceis de utilizar e 85,7% preferiu utilizá-los.
Conclusões: Os DE são pelo menos tão bons como os diários de papel em identificar o padrão de complicações motoras. Os DE têm a vantagem de melhor controlar a qualidade dos dados obtidos. Os doentes adaptam-se e gostam de utilizar DE. A adesão ao preenchimento dos DE foi elevada.
Background: Parkinson´s disease patients present motor fluctuations and dyskinesias as disease progresses and therapeutic side effects emerge. Diaries are an essential tool for registering clinical fluctuations. Paper diaries are currently questioned for accuracy of data. Objectives: To evaluate the feasibility, accuracy, compliance to completion and ease of use of an electronic diary (ED) as compared with a paper diary. Methods: This study is a crossover randomized trial. Patients with motor fluctuations and dyskinesias were asked to complete, at home, a 48 hour paper or ED, according with the trial period. Diaries friendliness was evaluated by questionnaire. In addition, patients were observed for 3 periods of 6 hours, in which patient and clinician separately classified, every 30 minutes, the predominant motor status presented and filled up dyskinesias scales. Results: Twenty one patients were enrolled. “Off time” duration and other clinical outcomes were not different between paper and electronic diaries. Compliance for registering entrances in ED was 100%, but 92,8% of patients introduced data with delay. Paper diaries showed invalid entrances in 57,1% of the patients. Intraclass Correlation showed a high to moderate agreement between patients and investigator in 71,4% of ratings. Variability between paper and electronic diary ratings was lower than between two sets of paper diaries obtained in the context of other trial. 71,4% of patients consider ED not difficult to use, and 85,7% prefer to use them. Conclusions: Electronic diaries are at least as good as paper diaries in depicting patient’s pattern of motor complications. Electronic diaries provide an opportunity to control the quality of the data that is not available with paper. Patients adapt and like to use electronic diaries to assess motor fluctuations and dyskinesias. Compliance for introducing data on ED was high.
Background: Parkinson´s disease patients present motor fluctuations and dyskinesias as disease progresses and therapeutic side effects emerge. Diaries are an essential tool for registering clinical fluctuations. Paper diaries are currently questioned for accuracy of data. Objectives: To evaluate the feasibility, accuracy, compliance to completion and ease of use of an electronic diary (ED) as compared with a paper diary. Methods: This study is a crossover randomized trial. Patients with motor fluctuations and dyskinesias were asked to complete, at home, a 48 hour paper or ED, according with the trial period. Diaries friendliness was evaluated by questionnaire. In addition, patients were observed for 3 periods of 6 hours, in which patient and clinician separately classified, every 30 minutes, the predominant motor status presented and filled up dyskinesias scales. Results: Twenty one patients were enrolled. “Off time” duration and other clinical outcomes were not different between paper and electronic diaries. Compliance for registering entrances in ED was 100%, but 92,8% of patients introduced data with delay. Paper diaries showed invalid entrances in 57,1% of the patients. Intraclass Correlation showed a high to moderate agreement between patients and investigator in 71,4% of ratings. Variability between paper and electronic diary ratings was lower than between two sets of paper diaries obtained in the context of other trial. 71,4% of patients consider ED not difficult to use, and 85,7% prefer to use them. Conclusions: Electronic diaries are at least as good as paper diaries in depicting patient’s pattern of motor complications. Electronic diaries provide an opportunity to control the quality of the data that is not available with paper. Patients adapt and like to use electronic diaries to assess motor fluctuations and dyskinesias. Compliance for introducing data on ED was high.
Descrição
Tese de mestrado, Neurociências, Faculdade de Medicina, Universidade de Lisboa, 2009
Palavras-chave
Doença de Parkinson Flutuações motoras Discinésias Diários electrónicos Teses de mestrado - 2009