Retrospective analysis of 98 Parkinson's patient–caregiver pairs found strong positive correlations between patient-reported Dysphagia Handicap Index and caregiver-reported DHI-Companion scores across early, mid, and late disease stages.

This validates caregiver-reported dysphagia measures as reliable complementary endpoints for clinical monitoring and trials of swallowing interventions in PD, but offers limited mechanistic or therapeutic discovery insights.

Parkinson disease (PD) is one of the most common neurodegenerative diseases worldwide with dysphagia being a common sequela of PD. Individuals with Parkinson disease (IwPD) and dysphagia and their caregivers may have differing perceptions of the adverse effects of dysphagia on daily living. Assessing how IwPD and their caregivers perceive dysphagia has the potential to contribute to clinical knowledge of the health status of IwPD, broaden insight into swallowing therapy progress, influence swallowing treatment recommendations and improve long term swallowing outcomes for IwPD. In this retrospective study, the patient-reported outcome measures of the Dysphagia Handicap Index (DHI) and the Dysphagia Handicap Index-Companion (DHI-C) were administered to ninety eight pairs of IwPD and their caregivers. The association of self-perception of dysphagia in IwPD and their caregivers' perceptions was assessed at early, mid and late stages of PD. Subjects were divided into three levels of time since PD diagnosis: 0-4 years, 5-9 years and 10 or more years. Spearman's correlations coefficients were computed to assess associations between the DHI and DHI-C scores (subscales, total score, and perceived severity scores). Results revealed significant positive associations in almost all of the time points. The results of this study indicate that IwPD and their caregivers appear to perceive adverse effects of dysphagia similarly at various stages of PD. Future prospective studies may provide further information regarding the association between the adverse effects of dysphagia in IwPD and caregivers.