Comparison of Patient-Reported and Caregiver-Reported Swallowing-Related Quality of Life in Parkinson's Disease

This pilot study explored agreement on swallowing-related quality-of-life scores reported by individuals with Parkinson's disease (PD) and their caregivers. Thirty-six patient-caregiver pairs completed the Swallowing Quality of Life Questionnaire (SWAL-QOL) using an online survey format. Additional background and clinical information was ascertained. A Wilcoxon signed-rank test was completed to compare the means of scores between individuals with PD and caregivers. Factors potentially influencing SWAL-QOL scores (age, employment status, sex, ethnicity, race, previous history of swallowing evaluation or treatment, caregiver concern about patient cognition, caregiver burden, and time since onset of disease) were explored using Spearman Coefficient Correlation tests. The Holm-Bonferroni method was used to adjust for multiple comparisons. Results did not reveal significant differences in SWAL-QOL scores between individuals with PD and caregiver pairs. There was a moderate degree of reliability and agreement between paired patient and caregiver scores, with the average ICC measures being 0.598 (95% CI [358, 0.748]) (F(71, 72) = 2.451, p < 0.0001). After adjusting for multiple comparisons, caregiver burden was found to be the only significant factor associated with caregivers' reported scores. No significant influential factor on reported scores by individuals with PD was found. These pilot results suggest individuals with PD and their caregivers may report similar swallowing-related quality-of-life scores. Further, caregiver burden appears to be an influential factor for caregiver-reported scores. Future studies should investigate the clinical benefits of including caregiver SWAL-QOL ratings in assessments, either as a supplement to patient scores to identify discrepancies across the dyad or in place of patient scores if needed. Further, caregiver burden and its influence on dysphagia identification and management should be explored, with targeted interventions to manage caregiver burden.