Luchesi Karen Fontes, Silveira Isabela Costa
Departamento de Fonoaudiologia, Universidade Federal de Santa Catarina - UFSC - Florianópolis (SC), Brasil.
Codas. 2018 Aug 30;30(5):e20170215. doi: 10.1590/2317-1782/20182017215.
This study aims to discuss Speech-language pathology (SLP) therapy intervention in dysphagia with a focus on palliative care and quality of life. It is a case study conducted with four participants with amyotrophic lateral sclerosis undergoing SLP therapy outpatient follow-up. The Swallowing Quality of Life Questionnaire (SWAL-QOL) and a structured interview were applied to the participants, who also underwent Videofluoroscopic Swallowing Study (VFSS). Participants were classified according to the Functional Oral Intake Scale (FOIS), the Amyotrophic Lateral Sclerosis Severity Scale, translated and culturally adapted to Brazilian Portuguese (ALSSS), and the Dysphagia Outcome Severity Scale (DOSS). Four patients showed interest in maintaining oral food intake, even if minimal, in the event of tube feeding. Regarding severity of dysphagia, observed in the SVF, the participants presented DOSS classification ranging from functional deglutition to mild-to-moderate dysphagia. The impact on swallowing quality of life was between discrete and severe. Not all participants presented correlation between severity of dysphagia and SWAL-QOL level of impairment, with impact on the quality of life observed even in cases of mild dysphagia severity. Participants reported that they would feel uncomfortable in the event of exclusive tube feeding, and that the oral intake of food, even if minimal only for the pleasure of eating, would have a direct or indirect impact on their quality of life.
本研究旨在探讨言语语言病理学（SLP）治疗对吞咽困难的干预，重点关注姑息治疗和生活质量。这是一项针对四名接受SLP治疗门诊随访的肌萎缩侧索硬化症患者进行的案例研究。对参与者应用了吞咽生活质量问卷（SWAL-QOL）和结构化访谈，他们还接受了电视荧光吞咽造影检查（VFSS）。根据功能口服摄入量量表（FOIS）、翻译并经文化适应为巴西葡萄牙语的肌萎缩侧索硬化症严重程度量表（ALSSS）以及吞咽障碍结果严重程度量表（DOSS）对参与者进行分类。四名患者表示，即使在进行管饲的情况下，也有兴趣维持口服食物摄入，哪怕摄入量极少。关于在VFSS中观察到的吞咽困难严重程度，参与者的DOSS分类范围从功能性吞咽到轻度至中度吞咽困难。对吞咽生活质量的影响介于轻微和严重之间。并非所有参与者的吞咽困难严重程度与SWAL-QOL损伤水平之间都存在相关性，即使在吞咽困难严重程度较轻的情况下，也观察到了对生活质量的影响。参与者报告称，如果完全采用管饲，他们会感到不舒服，并且口服食物摄入，哪怕只是为了进食的乐趣而摄入极少的量，都会对他们的生活质量产生直接或间接的影响。
