Dysphagia and Quality of Life: A Cross-Sectional study of patient and caregiver perspectives.

OBJECTIVE

This study aimed to simultaneously explore the perception of dysphagia from both patient and caregiver perspectives, to assess its impact on quality of life and provide insights for the development of effective, individualized rehabilitation strategies.

MATERIALS AND

METHODS

A total of 160 participants were enrolled, including 80 patients with dysphagia of heterogeneous etiology and 80 caregivers. Patients completed the Italian Dysphagia Handicap Index (I-DHI), while caregivers filled out the Caregiver Mealtime and Dysphagia Questionnaire (CMDQ). Questionnaire data were compared with results from the Fiberoptic Endoscopic Evaluation of Swallowing (FEES), using the Penetration-Aspiration Scale (PAS).

RESULTS

Patients showed limited knowledge of dysphagia symptomatology (58.1%), adequate coping abilities (61.5%), and preserved emotional stability (62.9%). Caregivers demonstrated a clear understanding of the problem (61.5%) and high adherence to speech therapy recommendations (74.8%). Spearman's rank correlation revealed no significant associations between I-DHI and CMDQ scores, nor between Oropharyngeal Dysphagia Severity (ODS) and PAS (rs = 0.236). Cluster analysis indicated significant effects of diagnosis (p = 0.003) and educational level (p = 0.009) among patients, and of gender, caregiving role and educational level among caregivers (all p < 0.001).

CONCLUSIONS

The findings underscore the importance of integrating patient and caregiver perspectives into clinical decision-making. Dysphagia significantly affects quality of life for both groups, supporting the need for multidimensional approaches combining self-report measures with clinical and instrumental assessments.