Silbergleit Alice, Konnai Ramya, Schultz Lonni R
Division of Speech-Language Sciences and Disorders, Department of Neurology, Henry Ford Health, 6777 West Maple Road, West Bloomfield, MI, 48322, United States.
Department of Public Health Sciences, Henry Ford Health, 2799 West Grand Boulevard, Detroit, MI, 48202, United States.
Dysphagia. 2025 Feb;40(1):169-175. doi: 10.1007/s00455-024-10716-z. Epub 2024 Jul 2.
Dysphagia is known to present a social and psychological burden with negative effects on quality of life. However, the psychosocial effect of an individual's dysphagia on those that care for them is less known. The purpose of this study was to develop a clinically efficient, statistically robust companion-reported outcomes measure to the Dysphagia Handicap Index (DHI) to better understand the impact of a patient's dysphagia on their companions as related to physical, emotional and functional domains of health-related quality of life. Seventy-seven initial statements describing companion perceptions of dysphagia were divided into physical, emotional and functional subscales. The statements were administered to 75 consecutive companions of individuals with dysphagia. Respondents replied never, almost never, sometimes, almost always and always to each statement and rated their companion's dysphagia severity on a 7-point equal appearing interval scale. Cronbach's α was performed to assess the internal consistency validation of the statements. The final questionnaire was reduced to 25 items and administered to 317 companions of individuals with dysphagia and 31 controls. Test-retest was performed on 29 companions of individuals with dysphagia. Cronbach's α was strong for the initial and final versions at r = 0.96 and r = 0.97 respectively. Significant differences occurred between companion responses of subjects with dysphagia and the control group. Test-retest reliability was strong (all ICC > 0.85). We present a statistically robust companion-reported outcomes measure to assess the handicapping effects of dysphagia on companions to further our understanding of the global effect of dysphagia and to guide treatment for successful swallowing outcomes.
众所周知,吞咽困难会带来社会和心理负担,对生活质量产生负面影响。然而,个人吞咽困难对其照顾者的心理社会影响却鲜为人知。本研究的目的是开发一种临床高效、统计稳健的陪伴者报告结局测量方法,作为吞咽困难障碍指数(DHI)的补充,以更好地了解患者吞咽困难对其陪伴者在健康相关生活质量的身体、情感和功能领域的影响。描述陪伴者对吞咽困难认知的77条初始陈述被分为身体、情感和功能三个子量表。这些陈述被施用于75名吞咽困难患者的连续陪伴者。受访者对每条陈述回答“从不”“几乎从不”“有时”“几乎总是”和“总是”,并在7点等距量表上对其陪伴者的吞咽困难严重程度进行评分。采用克朗巴哈α系数来评估陈述的内部一致性效度。最终问卷缩减至25项,并施用于317名吞咽困难患者的陪伴者和31名对照者。对29名吞咽困难患者的陪伴者进行了重测。初始版本和最终版本的克朗巴哈α系数分别为r = 0.96和r = 0.97,均很强。吞咽困难患者组与对照组陪伴者的回答存在显著差异。重测信度很强(所有组内相关系数均> 0.85)。我们提出了一种统计稳健的陪伴者报告结局测量方法,以评估吞咽困难对陪伴者的障碍影响,从而进一步加深我们对吞咽困难整体影响的理解,并指导治疗以实现成功的吞咽结局。