Londral Ana, Pinto Anabela, Pinto Susana, Azevedo Luis, De Carvalho Mamede
Translational Clinical Physiology Unit, Instituto de Medicina Molecular, Avenida Professor Egas Moniz, University of Lisbon, 1649-028, Lisbon, Portugal.
Department of Medical Rehabilitation, Hospital de Santa Maria-Centro Hospitalar Lisboa Norte (CHLN), Lisbon, Portugal.
Muscle Nerve. 2015 Dec;52(6):933-41. doi: 10.1002/mus.24659. Epub 2015 Jun 30.
In this study we performed a longitudinal investigation to assess the impact of early introduction of assistive communication devices (ACDs) on quality of life (QoL) in amyotrophic lateral sclerosis (ALS) patients and their caregivers.
Patients were followed for 7-10 months (3 evaluation periods). Bulbar-onset ALS patients (N = 27) and paired caregivers (N = 17) were included. Fifteen randomly selected patients received early support in ACD use. Patients were assessed using the ALS Functional Rating Scale-revised (ALSFRS-R), the McGill QoL (MQoL), the Communication Effectiveness Index (CETI), and performance in writing; and caregivers were assessed with the MQoL and World Health Organization Quality of Life questionnaire (WHOQOL-BREF).
Patients with early support had higher MQoL Psychological and MQoL Existential well-being domains; caregivers had higher MQoL Support domain and their MQoL Psychological domain positively associated with patient CETI. Most patients could communicate using a touchscreen keyboard to write, even when handwriting and speech were not possible.
Early intervention with an ACD seems to have a positive impact on QoL and gives patients the opportunity to improve skills for communication in later disease stages.
在本研究中，我们进行了一项纵向调查，以评估早期引入辅助沟通设备（ACD）对肌萎缩侧索硬化症（ALS）患者及其护理人员生活质量（QoL）的影响。
对患者进行了7至10个月的随访（3个评估期）。纳入了延髓起病的ALS患者（N = 27）及配对的护理人员（N = 17）。15名随机选择的患者在ACD使用方面获得了早期支持。使用修订的ALS功能评定量表（ALSFRS-R）、麦吉尔生活质量量表（MQoL）、沟通有效性指数（CETI）以及书写表现对患者进行评估；使用MQoL和世界卫生组织生活质量问卷（WHOQOL-BREF）对护理人员进行评估。
获得早期支持的患者在MQoL心理和MQoL存在幸福感领域得分较高；护理人员在MQoL支持领域得分较高，且他们的MQoL心理领域得分与患者的CETI呈正相关。即使在无法书写和说话时，大多数患者也能够使用触摸屏键盘进行沟通。
早期使用ACD进行干预似乎对生活质量有积极影响，并使患者有机会在疾病后期提高沟通技能。
