Caregiver Perception of Quality of Life in Neurological Patients with Dysphagia

Background: Patients with neurological conditions often present with oropharyngeal dysphagia, which impacts their quality of life. Many of these patients require assistance from a caregiver for their complex health needs. The goal of this study was to evaluate patient-caregiver agreement in the perception of the physical, functional, and emotional burden of dysphagia in the patient.

Methods: Fifty-two adult patients with oropharyngeal dysphagia of neurological etiology and respective caregivers responded to the European Portuguese version of the Dysphagia Handicap Index (EP-DHI) questionnaire independently. Caregivers were asked to respond based on what they thought would be the answer given by the patient.

Results: The study found statistically significant differences in responses between patient and caregiver in the functional (14.7 ± 10.4 vs. 12.7 ± 9.2, P=.03) and emotional (12.0 ± 9.4 vs. 10.4 ± 8.9, P=.02) subscores of the EP-DHI. Although no statistically significant differences in total score and physical score between patient and caregiver were found, spouses as caregivers tended to undervalue the emotional subscale (9.4 ±7.3 for patients and 7.7 ± 6.2 for caregivers, P=.01), and children underrated the functional subscale (16.9 ± 11.4 by patients and 13.2 ± 10.0 by caregivers, P=.02).

Conclusion: Caregivers are a reliable proxy in evaluating the general and physical impacts of dysphagia on quality of life in patients with neurological conditions. However, they undervalue the functional and emotional burdens.

Cite this article as: Casanova MJ, Carvalho IS, Freitas SV, Martins A, Magalhães A, Meireles L. Caregiver perception of quality of life in neurological patients with dysphagia. B-ENT. 2026;21(3):111-115.