Development and Validation of the Dysphagia Handicap Index-Companion (DHI-C)

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.